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Topic: cg---
Posted By: cg---
Subject: cg---
Date Posted: Mar 03 2010 at 9:56am
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To the dearest support group anyone could ever hope to have....it was a malignant pleural effusion. The doctor just called and I am devastated.
I just wanted the wonderful people who called, wrote, researched, prayed, sent cards to know that no matter how awful this disease may be...the love and kindness from friends I have never met makes it easier for me to bear.
With love and thanks,
Connie
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Replies:
Posted By: amylynn
Date Posted: Mar 03 2010 at 10:27am
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Connie,
I am so sorry to hear the news. I was praying that it wasn't. You will continue to be in all our thoughts and prayers.
Amy ------------- 36 at dx IDC 2/09, 8cmx3cm grade 3,BRCA1, Cl Trial-4- Taxotere,4-AC,6-Avastin,4 cycl Xeloda 9/09-rght mast.w/tissue exp PCR Avastin x10,28 rads,done 7/10 left mast/w bi-lat DIEP & OOPH Mets 6/2012 |
Posted By: MaryinSarasota
Date Posted: Mar 03 2010 at 10:27am
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I am speechless. Thank you for telling us. With love, Mary ------------- 53 @ Dx 5/08 Stage 1, grade 3, IDC 1.6 cm, 0 nodes, TNBC, lumpectomy, chemo TAC-6, radiation-34 12/18/08 NED-10/09, PBM w/TE recon. 7/10, removal of TE/infec 8/10. CT chest. Rec fat-graft & stem cells |
Posted By: Carol (Tenn)
Date Posted: Mar 03 2010 at 10:42am
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My dear Connie,
My love and prayers go out to you dear sister...
Carol ------------- St 2 Gr 3, A/C/T, DD Radiation x35 Rec chest wall 07/09 Radiation x28 NED 10/24/11 NED 10/5/12 NED 03/15/13 |
Posted By: mom&grandma
Date Posted: Mar 03 2010 at 10:52am
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Connie, This is indeed devastating news for you and for all of us that have had the pleasure of receiving your support. Please continue to post so that we may be able to support you now.
Bonnie ------------- Bonnie, mom of Heather, age 32, Dx on 9/1/09 TN IDC Stage 1, 1.4 c, lumpectomy, 10/8/09, DD AC & T, 3/9/10 bilateral mastectomy and immediate reconstruction, BRCA 1/2- |
Posted By: mainsailset
Date Posted: Mar 03 2010 at 10:56am
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Connie, I sent you a PM. Ok, NOW we go to work, NOW we team up to get cracking on finding the very best NEXT STEP for you. You ARE NOT alone, you are SURROUNDED by an army of defiant women.
So have you been able to get appt to see onc?
Ladies, time to gather our wits about us, we are all for one and one for all here!
Now I'm going to go outside for a bit and scream. Back in a minute. ------------- dx 7/08 TN 14x6.5x5.5 cm tumor 3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear |
Posted By: 123Donna
Date Posted: Mar 03 2010 at 10:58am
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Connie, I am so sorry. My heart just sank when I heard the news. Please let us know whatever we can do to help you. You are in my thoughts and prayers. When you feel up to it, can you tell us what treatment they are recommending? You have given so much to all of us. We are here for you and will stand by your side every step of the way. Love and hugs, Donna ------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
Posted By: MaryinSarasota
Date Posted: Mar 03 2010 at 11:03am
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I am so mad I keep editing this damn thing over and over. Waiting to do research. ------------- 53 @ Dx 5/08 Stage 1, grade 3, IDC 1.6 cm, 0 nodes, TNBC, lumpectomy, chemo TAC-6, radiation-34 12/18/08 NED-10/09, PBM w/TE recon. 7/10, removal of TE/infec 8/10. CT chest. Rec fat-graft & stem cells |
Posted By: dmwolf
Date Posted: Mar 03 2010 at 11:13am
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Sweetie, I have a tear rolling down my cheek. IT SUCKS. HOW INCREDIBLY F*CKED. I'm with mainy - time to MOBILIZE and get you through this. Love, Denise (one of your army) ------------- DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10. |
Posted By: cg---
Date Posted: Mar 03 2010 at 1:07pm
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To update you since this morning....
I am trying to get through to the oncologist to get an appointment (not as easy as one might think). I asked my GP to call and I gave him my best advice....NEVER let them transfer you because you will speak with 4 others repeating exactly the same thing, and in the end you will just hit your head with the phone receiver.
Love,
Connie
P.S. Paco is beside himself
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Posted By: Autumn10182001
Date Posted: Mar 03 2010 at 1:15pm
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Connie, I am so sorry for this news... now team.. lets get praying... and lets start researching... Connie, how can we help... ? Autumn ------------- DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09 |
Posted By: Lillie
Date Posted: Mar 03 2010 at 1:18pm
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Hello Connie,
I am so sorry you had to hear such devestating news today, or anyday for that matter. I will be praying for speedy medical support for you. No more of this going to the end of the line or being put on the back burner. Please let us know what we can do to help. I pray they come up with an effective treatment plan "yesterday"..... Please keep us informed, WE LOVE YOU... Love in Christ, Lillie ------------- Dx 6/06 age 65,IDC-TNBC Stage IIb,Gr3,2cm,BRCA- 6/06 L/Mast/w/SNB,1of3 Nodes+ 6/06 Axl. 9 nodes- 8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4 No Rads. No RECON - 11/2018-12 yrs NED |
Posted By: kirby
Date Posted: Mar 03 2010 at 1:19pm
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Connie,
I am so sorry to hear your devastating news. My thoughts will be with you. ------------- kirby dx Feb. 2001. Age 44 Lumpectomy 2cm. no nodes stage 1 grade 3 4 rnds AC, 35 rads |
Posted By: 123Donna
Date Posted: Mar 03 2010 at 2:48pm
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Connie, Let us be your foot soldiers in this battle. I know you're in Canada and constrained by their rules for treatment. Is there anyway at all that your case could be reviewed in the states? For example, if we could get a contact (an onc that specialized in tnbc) at some place like MD Anderson, is there anyway to get your medical records sent there and ask for an opinion for treatment? Can you get treatment in the states if all else fails? ------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
Posted By: mainsailset
Date Posted: Mar 03 2010 at 3:32pm
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Dear All
Until Connie gets her appt with her onc and gets something more definitive for us to start researching what we are left with it seems to be, so that we can be helpful
1. What support groups can we find or advocacy groups up in the Ontario, Canada area. Onces that can cut loose an advocate to drive her if necessary, or whatever she needs
2. She's hoping to get chemo treatment, and eyeing the PARP trials, so what PARP trials are out there, anyone here involved in them and if so how are they faring
3. She has managed to get in with one of the very best onc's in her area, the problem is immediate access. So if anyone has a "Rocko" in their family that could travel with to add a little intimidation to the govt medical system that would surely be a good thing. Their doctors are no better or worse than ones in the US, the system and managing it are what are the real problem.
So for the immediate moment, let's look to ourselves, what is available in the PARP trials, how well are our members managing, anyone with personal experience with the pleural effusion, heart issues and of course any recipes for dog treats...all are welcome ------------- dx 7/08 TN 14x6.5x5.5 cm tumor 3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear |
Posted By: MsBliss
Date Posted: Mar 03 2010 at 4:36pm
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Dear Connie, I sent you a PM. What Mainy said....amen to all that. I will see what I can do too. Hugs and strength, Bliss |
Posted By: diane1234
Date Posted: Mar 03 2010 at 5:23pm
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I am 4 weeks post radiation.....I just wanted to say when I first started the Journey (Connie) helped me SOOOO much.....SORRY but gotta say it......I HATE THE FREAKIN STUPID PATHETIC DISEASE!!!!! WHERE IS THE D**MN CURE???????!!!!!!!!!!!!!!!!!!!!!!!!!! Lord please forgive me.....Just put your hands on our sister and let her know she is NOT alone... ------------- dx 4/09 at 36 yrs old. dbl Mast. 5/09. 12 weekly Taxol 4 FAC tri weekly. 32 rads completed 2/2010. Its Back 5/2010!! Chest wall, Mediastinal node, Lft mammary node and liver. Back on chemo. |
Posted By: cg---
Date Posted: Mar 03 2010 at 5:49pm
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I want you to know how much I appreciate all the kindness and support. I have an appointment for next Tuesday with my oncologist. The very kind respirologist asked me to come to his office tomorrow and hopefully we will have a better idea of what we are dealing with. I need to fact find to see what is being done for malignant pleural effusion. If anyone is going through this please share what treatment protocol is being used in your area.
Has anyone every heard of cisplatin solution being infiltrated directly in the lung? I read it somewhere and cannot find it now.
From the bottom of my heart, I thank you for your kindness.
Love,
Connie
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Posted By: dmwolf
Date Posted: Mar 03 2010 at 6:42pm
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Hi, sweetie. Cisplatin directly into the lung sounds awful, though that is just what they do in the peritoneal cavities of women with ovarian cancer and it works well. My guess is that the first thing to do is to take care of the effusion. I think this means something like doing a talc pleurodesis, which does something like scar the pleural membranes so they 'stick' together, which prevents build-up of fluid. The other possibility is a stent, though this means fluid with cancer cells will be flowing into peritoneal cavity, which sounds like a bad idea. Your respirologist can explain all the options to you tomorrow. As for feedback, you should probably also post the question in the mets/recurrence subforum here, and at Inspire http://www.inspire.com/groups/advanced-breast-cancer/discussions/ - http://www.inspire.com/groups/advanced-breast-cancer/discussions/ . Speaking of which, if you haven't already, you might want to join Inspire. A wonderful group of women can be found there, living with stage IV. You can count on lots of feedback to any question, and support. (We can't have too much of that, right? And just about now it might be good to have at your fingertips a group of cool women who have had to hear the same words and make the same decisions.) Love, Denise ------------- DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10. |
Posted By: dmwolf
Date Posted: Mar 03 2010 at 6:46pm
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Here's some info: (it looks like the best sclerosing agent is talc, not bleomycin or cisplatin) Two general approaches to the management of symptomatic pleural effusions are chest tube drainage with installation of a sclerosing agent and thoracoscopic drainage of the pleural effusion under local or general anesthesia with intraoperative sclerosis of the pleural space. Historically, many chemical agents have been instilled into the pleural space and shown to have some effectiveness in controlling effusions, including tetracycline, doxycycline, minocycline, bleomycin, cisplatin, doxorubicin, etoposide, fluorouracil, mitomycin, mitoxantrone, interferon, Corynebacterium parvum, mepacrine, methylprednisolone, and talc.[ http://www.meds.com/pdq/effusion_pro.html#1.6 - 6 ] Chest tube drainage should be done by inserting the chest tube into the pleural cavity and draining the fluid. When the drainage reaches less than 50-100 milliliters in a 24 hour period, a sclerosing agent can be instilled.[ http://www.meds.com/pdq/effusion_pro.html#1.2 - 2 , http://www.meds.com/pdq/effusion_pro.html#1.5 - 5 ] Information on the recommended sclerosing agent is currently inconclusive. The few randomized studies on this topic are plagued by small numbers (all but one have fewer than 50 patients per arm), and relatively short follow-up. The single randomized study with more than 100 patients showed nearly twice as many patients had their pleural effusion controlled with bleomycin at 90 days (70%) than those treated with tetracycline.[ http://www.meds.com/pdq/effusion_pro.html#1.7 - 7 ] Large single-arm comparative studies [ http://www.meds.com/pdq/effusion_pro.html#1.8 - 8 - http://www.meds.com/pdq/effusion_pro.html#1.10 - 10 ] and very small randomized studies suggest advantages for talc as the sclerosing agent compared to tetracycline and bleomycin.[ http://www.meds.com/pdq/effusion_pro.html#1.11 - 11 , http://www.meds.com/pdq/effusion_pro.html#1.12 - 12 ] In these two randomized studies, thoracoscopy and insufflation of talc controlled the pleural effusions in twice as many patients as tetracycline or bleomycin (>90% versus 50%, respectively) in 63 patients with breast cancer. The comparative and single-arm studies suggest that talc provides control of approximately 90% of pleural effusions for 90 days or longer.[ http://www.meds.com/pdq/effusion_pro.html#1.8 - 8 - http://www.meds.com/pdq/effusion_pro.html#1.10 - 10 ] We await the results of two different large cooperative group randomized studies to help determine the appropriate sclerosing agent to use to treat patients with malignant pleural effusions. One compares intrapleural bleomycin, doxycycline, and talc as sclerosing agents.[ http://www.meds.com/pdq/effusion_pro.html#1.13 - 13 ] Another compares the use of a talc slurry administered via chest tube to talc insufflated during thoracoscopy.[ http://www.meds.com/pdq/effusion_pro.html#1.14 - 14 ] Another approach is appropriate for patients with a symptomatic malignant pleural effusion and good performance status (ECOG performance status of 0-2) who are capable of undergoing a procedure under local, regional, or general anesthesia. These patients can have thoracoscopy with biopsy of suspicious pleural lesions, lysis of adhesions, evaluation to see if the lung re-expands, and installation of the sclerosing agent during the same procedure.[ http://www.meds.com/pdq/effusion_pro.html#1.4 - 4 ] This potentially shortens the hospitalization because the whole procedure can be done in the operating room in a single day. ------------- DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10. |
Posted By: dmwolf
Date Posted: Mar 03 2010 at 6:49pm
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Treatment options (personally, I think I would probably go with number 3 using talc along with a systemic chemo starting after I recover from the surgery):
------------- DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10. |
Posted By: mom&grandma
Date Posted: Mar 03 2010 at 6:52pm
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Denise,
YOU ARE GOOD!!
Bonnie ------------- Bonnie, mom of Heather, age 32, Dx on 9/1/09 TN IDC Stage 1, 1.4 c, lumpectomy, 10/8/09, DD AC & T, 3/9/10 bilateral mastectomy and immediate reconstruction, BRCA 1/2- |
Posted By: dmwolf
Date Posted: Mar 03 2010 at 6:55pm
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Connie, are you BRCA+? If so, the PARP's are an excellent bet (they do MUCH better for women with BRCA+ cancers). I do remember that you are EGFR+, which means that you can add a targeted EGFR inhibitor like gefitinib (iressa) or erlotinib (tarceva) to whatever chemo you decide to use and it should synergize.
------------- DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10. |
Posted By: 123Donna
Date Posted: Mar 03 2010 at 7:08pm
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Connie, You'll have to forgive me because I don't understand all that is involved in navigating the Canadian health system. I did a search and found some of these links. I'm not sure if any of this will help you. http://www.neutropenia.ca/community/ccan_who.html - http://www.neutropenia.ca/community/ccan_who.html http://www.cancer.ca/ontario.aspx - http://www.cancer.ca/ontario.aspx http://www.canceradvocacy.ca/ - http://www.canceradvocacy.ca/ ------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
Posted By: cg---
Date Posted: Mar 03 2010 at 7:22pm
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Denise,
I would go for door number 3. Denise....you are absolutely correct...I went and looked up the testing I had done which did in fact document that I was EGFR+...(Thank you kind American PhD who arranged that for me to have that testing done at U.S. Lab in Irvine, California). I think I mentioned how I have been the recipient of many acts of kindness from people I have never met but who have guided me safely.
This is what I need to calm me...brainstorming of ideas so that I am not overwhelmed when I see my oncologist...just able to have a frame of reference.
I remember the cisplatin article because I was fascinated by the success rate. Now, to find it again.
They would not test me in Ontario for the BRCA because I did not meet the criteria.
When ever I was in my search mode for someone else I thought....I cannot imagine how frightening it must be not to be able to think or see straight and have to make these kind of decisions....I can tell everyone it would be overwhelming for me if I did not feel your hands reaching out to help me find my way.
Love,
Connie
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Posted By: SagePatientAdvocates
Date Posted: Mar 03 2010 at 9:15pm
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Dear Connie, our hands, minds, hearts and prayers are with you....and always shall be.. I just wish I had a magic wand... love back at you, Steve ------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates |
Posted By: MsBliss
Date Posted: Mar 03 2010 at 9:54pm
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Connie, I just sent you another PM. Did they tell you what percentage you were EGFR +? Did they tell you if you had cytokeratin 5/6 positivity? Hugs, Bliss |
Posted By: Autumn10182001
Date Posted: Mar 03 2010 at 10:31pm
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Connie, I have to go to Toronto on business April 11th, and will be there through that Friday. Not sure how close I will be to you, I will be in the vicinity of 8500 Warden Ave, Markham, ON L6G1A5. I am due to drive home Friday, but if there is anything I can do for you, and if we are not too far apart, (and if I could stay with you Friday night, as the company won't), I would be more than happy to do whatever I could for you Friday afternoon and Saturday morning.. if we are close enough, maybe we could meet for lunch or coffee or something.. Please let me know if there is anyway I could help.. .my prayers are with you, Autumn ------------- DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09 |
Posted By: TNBC_in_NS
Date Posted: Mar 03 2010 at 10:52pm
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Connie: It is Helen here I am with Denise Door #3!!! I will find out what I can about what is available here in Canada. We are your army!!! USE US!!!! God love ya, hang in there. Wish I was closer!!! Call me if you need me : 902-252-2982 xoxo ------------- Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear |
Posted By: Terri
Date Posted: Mar 03 2010 at 10:53pm
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Dear Connie,
I haven`t been on the site much lately so forgive me for not knowing what has been going on with you. I`m so sorry and outraged to hear this news.
You have been there for me so many times with your wisdom, support and sense of humor. You`ve made me laugh through the tears and I admire you more than you can ever imagine.
My love, prayers and indignation are with you.
Love, Terri
------------- IDC DX 8/17/07 (age 41) Stage 1 Grade 1-2, 1.35 cm 2 nodes neg, Lumpectomy 10/07 Chemo: FEC 100 x 6, 35 rads BRCA 1/2 NEG PET/CT & Brain CT Nov 09 Brain MRI Aug 2012 NED |
Posted By: TNBC_in_NS
Date Posted: Mar 03 2010 at 10:59pm
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Connie:
Just found this site! This is at Princess Margaret Hospital in Toronto. Check it out.
http://www.clinlink.com/view_trial_public.php?trialid=224 - http://www.clinlink.com/view_trial_public.php?trialid=224
This one is on Treatment for MPE....
http://www.news-medical.net/news/20100203/Iodoprovidone-exhibits-safety-and-efficiency-in-management-of-malignant-pleural-effusion.aspx - http://www.news-medical.net/news/20100203/Iodoprovidone-exhibits-safety-and-efficiency-in-management-of-malignant-pleural-effusion.aspx
I will search again tomorrow to see what I can find. Try and breathe deep and let it out, then just rest for a bit! Keep us posted, we are in your corner!!!! BBIG HUGSS  ------------- Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear |
Posted By: unklez
Date Posted: Mar 03 2010 at 11:37pm
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Connie, You WILL find the strength to go through this experience..... ------------- Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads. |
Posted By: cg---
Date Posted: Mar 03 2010 at 11:50pm
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Oh how kind and timely...I will see the respirologist tomorrow and ask him about the new agent and I am going to ask about the MPE at Princess Margaret Hospital....I go to Sunnybrook and they would certainly have some insights.
Once again, the more knowledge I can gather with all your help, the better I will be able to make those all important informed decisions.
I must tell you that I have decided not to be stage IV....I am going to be stage IIB remedial (because obviously there were a few unruly cancer cells that did not get the lesson plan of getting gone and staying there).
Love,
Connie
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Posted By: cg---
Date Posted: Mar 03 2010 at 11:53pm
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Dear Autumn,
I may well be in Toronto during that time and I will let you know as the schedule of my new chemical routine upsets the natural rhythm of my life.
Love,
Connie
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Posted By: TNBC_in_NS
Date Posted: Mar 03 2010 at 11:55pm
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Wonderful stage IIB!!!! We are here for you Connie. I will be home all day so if you need me PM or call!!!
Get some sleep and know that while you sleep we are working at the trials, etc. Whatever we can come up with we will send on! In my mind, you are 10 (perfect)!!!! Carry no labels and take what you can get with regards to treatment... xoxo Your sister on the journey, Helen in NS ------------- Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear |
Posted By: cg---
Date Posted: Mar 04 2010 at 12:08am
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Dear Terri, I cannot tell you how many times I thought of you and your fur family....with 3 grandpups (Chihuhuas), and my Paco...you and I could be considered Ladies of the Kennel. I thank you for your kind thoughts. Believe me I remember all our conversations of life. Love,
Connie
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Posted By: Donna Z
Date Posted: Mar 04 2010 at 12:19am
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Connie I wish you did not have to travel this road. You fought this beast in every way possible teaching many of us along the way. I am off work tomorrow and will be looking at what Canada has in the way of trials. I know PARP and avastin are two that might be the best. You deserve the best. I will look for those studies. luv Donna ------------- Dx 03/09 TN, Stg 2a, gr 3, 1.7 cm Taxol X 12, FAC X 4, segmental mastec Sept 10/09, 1 pos/29, from Canada, Treatment MDAnderson, rads X 30 started Oct 29/09. Zometa start Nov 24/09 |
Posted By: cg---
Date Posted: Mar 04 2010 at 8:25am
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Good morning everyone, I am off to see the respirologist this morning and hopefully the pleural fluid analysis will give us more insight to my problem (the weight of which has dramatically lightened with your help). Love,
Connie
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Posted By: MaryinSarasota
Date Posted: Mar 04 2010 at 8:39am
 ------------- 53 @ Dx 5/08 Stage 1, grade 3, IDC 1.6 cm, 0 nodes, TNBC, lumpectomy, chemo TAC-6, radiation-34 12/18/08 NED-10/09, PBM w/TE recon. 7/10, removal of TE/infec 8/10. CT chest. Rec fat-graft & stem cells |
Posted By: Lillie
Date Posted: Mar 04 2010 at 8:46am
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Oh Connie,
Even in these difficult times I am glad your sense of humor still shines through. Also, part of my prayer for you is that you will hear some encouraging news. You can read it on the Spiritual Support site. I do believe that God is using the heads, hands, feet, brains, hearts and everyother part of his warriors to answer that prayer. Also, I am so thankful that you seem to be getting timely medical attention. You are ever in my thoughts and prayers. Love in Christ, Lillie ------------- Dx 6/06 age 65,IDC-TNBC Stage IIb,Gr3,2cm,BRCA- 6/06 L/Mast/w/SNB,1of3 Nodes+ 6/06 Axl. 9 nodes- 8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4 No Rads. No RECON - 11/2018-12 yrs NED |
Posted By: Lillie
Date Posted: Mar 04 2010 at 8:51am
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Connie,
I might add that, us Stage 11b's will be thrilled to have you join us. We are a large and friendly group. Love, Lillie ------------- Dx 6/06 age 65,IDC-TNBC Stage IIb,Gr3,2cm,BRCA- 6/06 L/Mast/w/SNB,1of3 Nodes+ 6/06 Axl. 9 nodes- 8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4 No Rads. No RECON - 11/2018-12 yrs NED |
Posted By: Carol (Tenn)
Date Posted: Mar 04 2010 at 10:40am
Good Morning Connie ,
Today is the day!! I am praying that you will get a clearer picture today of what you will need to fight this off.
I must say your spirits sound so much better today and that is a blessing.
Thinking of you today and every day,
Lots of Love and Lots of Prayers,
Carol ------------- St 2 Gr 3, A/C/T, DD Radiation x35 Rec chest wall 07/09 Radiation x28 NED 10/24/11 NED 10/5/12 NED 03/15/13 |
Posted By: TNBC_in_NS
Date Posted: Mar 04 2010 at 11:26am
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Hi Connie, it is 12:30 here and just waiting to hear from your visit this am. My prayers are with you for the right people to see you at the right time and have the right treatment right now for YOU! Talk soon, Helen in NS ------------- Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear |
Posted By: Donna Z
Date Posted: Mar 04 2010 at 11:32am
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Connie I too am waiting to see if you hear anything. We are reaching across countries and holding hands for the best treatment plan for you. luv Donna in British Columbia ------------- Dx 03/09 TN, Stg 2a, gr 3, 1.7 cm Taxol X 12, FAC X 4, segmental mastec Sept 10/09, 1 pos/29, from Canada, Treatment MDAnderson, rads X 30 started Oct 29/09. Zometa start Nov 24/09 |
Posted By: TNBC_in_NS
Date Posted: Mar 04 2010 at 11:42am
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Connie, Donna and all my Canadian TNBC sisters!
Keep the faith and know that our sisters and brothers in the US are searching like mad for us too! They are feeling helpless right now due to the lack of resources that we have,in Canada they have them all in the US! But they want to share them with us if we have the means to get there! Bear with them and girls get your information out there, something might trigger our US sisters minds and they may find something for Connie right now. I found a site for trial at the Princess Margaret Hospital in Toronto so Connie is taking that info with her this am, but girls we need more!!!! We need the right treatment for her. She is our focus right now, and thank you all so much for your support we are truly FAMILY on a difficult but rewarding JOURNEY. We found YOU and we are so GLAD and BLEST to be part of you!!!! God Bless,
Helen in NS Canada ------------- Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear |
Posted By: SagePatientAdvocates
Date Posted: Mar 04 2010 at 12:18pm
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Dear all, I received an email from Connie this morning before she left for her respirologist and another appt. What I find absolutely extraordinary in the midst of all of this was the fact that she took the time out in the middle of her stressful situation to send me a beautiful, kind, insightful message about me. I was deeply touched by what she wrote and as usual she was on the money. I think that speaks volumes about who she is and how she always has managed to put all of us first as she has tried to help so many of us on so many different levels. Connie, please, now is the time for you. Please focus your efforts on you and your treatment plan. Please, also, listen to your physicians and please, please try to get the rest your body needs. We are all here, praying for you and sending +++++++ vibrations your way. We will be with you every step of the way. I am glad you are feeling the love...it is authentic....it is palpable... love, Steve ------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates |
Posted By: cg---
Date Posted: Mar 04 2010 at 12:20pm
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This is the morning update... My oncologist's nurse called this morning....the doctor wants to see me even earlier than Tuesday (We definitely have a powerful force on this forum than can will their timelines even in Canada!).
The very kind respirologist offered to care for me here should the need arise(in concert with my oncologist) who is located 2 hours from here. (Just ticking off our wish list).
I wish I could explain how waves of nausea came over me when I saw these words:
"Malignant cells suggestive of metastatic adenocarcinoma. Immunohistochemical stains are performed and the malignant cells are positive for CKAE1/AE3 and negative for GCDFP-15. Mesothelial cells are positive for calretinin."
If anyone has any insight into the ramifications of that description, I would appreciate your wisdom. Unfortunately, I cannot read when I am crying...
Gone to hug Paco. Thank you.
Love,
Connie
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Posted By: SagePatientAdvocates
Date Posted: Mar 04 2010 at 12:24pm
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Dear Connie, I will try to check quickly and I am sure others will as well.. I think the main thing is to try to stay focused on getting yourself the best possible care... Your news is difficult and devastating. I am deeply saddened but am determined to try and help you come up with the best plan.. love, Steve ------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates |
Posted By: TNBC_in_NS
Date Posted: Mar 04 2010 at 12:26pm
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OK Hon: You get Paco and have a rest for the rest of the day!! That is OUR ORDERS!!!!
Let us do the research for you!!! Let us do the Praying for YOU!!!
YOU REST!!! xox Big HUGS ------------- Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear |
Posted By: dmwolf
Date Posted: Mar 04 2010 at 12:28pm
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Sweetie, Of course you are crying. Wrap yourself in a blanket and hug Paco. Waves of nausea - fear circulating through the body, landing in the gut. News that is undigestible and therefore nauseating. We'll find out what the report implies. I wish you lived nearby so I could drive over and give you a hug and some soup. Love, Denise ------------- DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10. |
Posted By: SagePatientAdvocates
Date Posted: Mar 04 2010 at 12:33pm
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Dear Connie, sorry I am on my way to the airport soon to go to an ASCO conference in San Francisco but here is what I found- Expression of calretinin and other mesothelioma-related markers in thymic carcinoma and thymoma Human Pathology, Volume 34, Issue 11, Pages 1155-1162 AbstractThymic
carcinoma and thymoma are primary neoplasms of the anterior mediastinum
that can involve the lung and pleura in advanced stages or, in rare
instances, occur as primary pleural tumors. Thus these tumors may be
encountered in thoracic and pleural biopsy specimens. Recognizing the
immunohistochemical patterns of calretinin and other
mesothelioma-related markers in thymic carcinoma and thymoma may be
helpful in avoiding confusion with malignant mesothelioma and pulmonary
carcinoma, both of which are major differential diagnoses in this
location. Accordingly, in the present study we examined the expression
of calretinin, mesothelin, cytokeratin (CK) 5/6, thrombomodulin,
HBME-1, Wilms’ tumor-1 (WT-1), Ber-EP4, MOC-31, BG-8, B72.3,
carcinoembryonic antigen (CEA), CD15, thyroid transcription factor-1
(TTF-1), p63, and CD5 in 22 thymic carcinomas and 35 thymomas, and
compared the results with those of malignant mesothelioma and pulmonary
adenocarcinoma. Around 1/3 of thymic carcinomas were positive for
calretinin and/or mesothelin. Both thymic carcinomas and thymomas were
frequently positive for CK 5/6. Immunoreactivity for HBME-1 was seen in
4 thymic carcinomas and 10 thymomas. Except for 1 thymic carcinoma
being positive for WT-1, all other thymic carcinomas and thymomas were
negative for WT-1 and thrombomodulin. None of the thymic carcinomas and
thymomas expressed TTF-1. More than 70% of the thymic carcinomas were
positive for Ber-EP4, BG-8, and CD15. The positive rates of MOC-31,
B72.3, and CEA in thymic carcinomas were in the middle between those in
mesothelioma and pulmonary adenocarcinoma. All thymic epithelial tumors
revealed nuclear immunoreactivity for p63. Nine thymic carcinomas (41%)
expressed CD5. We found that a panel of positive p63, negative
thrombomodulin, WT-1, and TTF-1 is most discriminatory for thymic
epithelial tumors. Other mesothelial (calretinin and mesothelin) and
epithelial (Ber-EP4, BG-8, and CD15) markers are less contributory in
discerning thymic epithelial tumors due to their overlapping expression
with malignant mesothelioma and pulmonary adenocarcinoma. Given the
complexity of the staining patterns among the different entities,
proper immunohistochemical stainings should be selected and interpreted
with caution, and correlated with clinicopathologic findings in the
differential diagnoses of thoracic biopsy specimens. love, ------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates |
Posted By: dmwolf
Date Posted: Mar 04 2010 at 12:49pm
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Connie, there might not be enough information to know where the cells are from. (might not be breast cancer...could be mesothelioma). Be sure to talk to your respirologist and oncologist about this. Later today I'll see if I can find more info. " Mesothelioma versus Adenocarcinoma http://www.pathologyoutlines.com/pleura.html#top - top Difficult to differentiate histologically if adenocarcinoma does not produce mucin Adenocarcinomas tend to have columnar morphology with more pleomorphism, nuclear molding and cellular crowding Stains recommended to differentiate these 2 tumors: calretinin, cytokeratin 5/6 or WT1 and CEA, MOC31 (or B72.3, Ber-EP4 or BG8), http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12883236&dopt=Abstract - AJSP 2003;27:1031 ; another study recommends Ber-EP4, CK 5/6 and either calretinin or CEA, http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11145250&dopt=Abstract - AJSP 2001;25:43 Stains that are specific for mesothelioma vs. adenocarcinoma: calretinin (100% vs. 8%, cytoplasmic granular staining), cytokeratin 5/6 (100% vs. 2%), WT1 (93% vs. 0%, nuclear staining), thrombomodulin (77% vs. 14%, membranous staining, also stains endothelium), N-cadherin (73% vs. 30%) Stains that are specific for adenocarcinoma vs. mesothelioma: MOC31 (100% vs. 8%), Ber-EP4 (100% vs. 18%, basolateral surface staining), BG8 (96% vs. 7%, diffuse and intense staining), CEA (88% vs. 0%, granular cytoplasmic staining), B72.3 (84% vs. 0%, membranous and cytoplasmic staining), TTF1 (74% vs. 0%), CD15/LeuM1 (72% vs. 0%, cytoplasmic staining) Stains frequently positive in both tumors: keratin cocktails, EMA, E-cadherin, HBME, CD44S, mesothelin, vimentin Not recommended since findings not reproducible or not good discriminants: PAS, glycogen, hyaluronic acid staining, mesothelin Pleural fluid measurements: high levels of hyaluronic acid levels are suggestive of mesothelioma; high levels of CEA are associated with adenocarcinoma Intracytoplasmic neutral mucins (mucicarmine positive after hyaluronidase predigestion) is relatively specific but not sensitive for adenocarcinoma Micro images of mesotheliomas: http://www.nature.com/modpathol/journal/v13/n2/fig_tab/3880018f4.html - calretinin , http://www.nature.com/modpathol/journal/v13/n2/fig_tab/3880018f2.html - CK5/6 , http://www.nature.com/modpathol/journal/v13/n2/fig_tab/3880018f1.html - thrombomodulin , http://arpa.allenpress.com/arpaonline/?request=display-figures&name=i1543-2165-125-10-1316-f01 - WT-1 (figures 1, 3) EM: helpful in distinguishing mesothelioma from adenocarcinoma in well differentiated tumors; not helpful in distinguishing benign, reactive or malignant mesothelial proliferations References: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=10697265 - Mod Path 2000;13:107 , http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=10757409 - AJSP 2000;24:598 , http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=12548160 - AJSP 2003;27:150 " ------------- DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10. |
Posted By: SagePatientAdvocates
Date Posted: Mar 04 2010 at 12:51pm
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Dear Connie, I know you want to understand everything and that's why I posted the link but regarding the CKAE1/AE3 the references are very complicated and I feel it is best for you to question your physicians and let them explain it all to you...having said that perhaps Denise or someone else can put it in perspective for you. I think the bottom, bottom line is that this news is overwhelming and please be kind and gentle to yourself and allow yourself some down time with Paco and your very special husband. all the best, Steve ------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates |
Posted By: cg---
Date Posted: Mar 04 2010 at 2:09pm
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The phone rang again....my oncologist's nurse just called and after they saw all the reports....my oncologist wants a brain CT with contrast. I think I will be adding my own Canadian chorus to your song God Bless America.....because I will be having a CAT scan tonight in Buffalo, New York, leave with my CD of the CT scan and the report will be available by Monday. I am going to leave a note on my computer instructing me to breathe regularly - because it is no longer an automatic function when the anxiety paralyzes every part of your being.
Love,
Connie
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Posted By: TNBC_in_NS
Date Posted: Mar 04 2010 at 2:18pm
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Connie: You go girl! We will be here and if need be we will breathe for you..... Have that CT scan done and let us know when you get back home. Yes, bring everything you can to help them in Buffalo to treat you totally! get their take on this report as well maybe they will explain it more fully to you so that you know what the battle is. God Bless h. Connie: If it is mesotheloma here is some promising news.
Chemotherapyhttp://www.news-medical.net/health/What-is-Chemotherapy.aspx - Chemotherapy is the only treatment for http://www.news-medical.net/health/What-is-Mesothelioma.aspx - mesothelioma that has been proven to improve survival in randomised and controlled trials. The landmark study published in 2003 by Vogelzang and colleagues compared cisplatin http://www.news-medical.net/health/What-is-Chemotherapy.aspx - Chemotherapy alone with a combination of cisplatin and pemetrexed (brand name Alimta) http://www.news-medical.net/health/What-is-Chemotherapy.aspx - Chemotherapy ) in patients who had not received http://www.news-medical.net/health/What-is-Chemotherapy.aspx - Chemotherapy for malignant pleural http://www.news-medical.net/health/What-is-Mesothelioma.aspx - mesothelioma previously and were not candidates for more aggressive "curative" surgery. This trial was the first to report a survival advantage from http://www.news-medical.net/health/What-is-Chemotherapy.aspx - Chemotherapy in malignant pleural http://www.news-medical.net/health/What-is-Mesothelioma.aspx - mesothelioma , showing a statistically significant improvement in median survival from 10 months in the patients treated with cisplatin alone to 13.3 months in the combination pemetrexed group in patients who received supplementation with folate and vitamin B12. Vitamin supplementation was given to most patients in the trial and pemetrexed related side effects were significantly less in patients receiving pemetrexed when they also received daily oral folate 500mcg and intramuscular vitamin B12 1000mcg every 9 weeks compared with patients receiving pemetrexed without vitamin supplementation. The objective response rate increased from 20% in the cisplatin group to 46% in the combination pemetrexed group. Some side effects such as http://www.news-medical.net/health/What-is-Nausea.aspx - nausea and http://www.news-medical.net/health/What-is-Vomiting.aspx - vomiting , stomatitis, and http://www.news-medical.net/health/What-is-Diarrhea.aspx - diarrhoea were more common in the combination pemetrexed group but only affected a minority of patients and overall the combination of pemetrexed and cisplatin was well tolerated when patients received vitamin supplementation; both quality of life and lung function tests improved in the combination pemetrexed group. In February 2004, the United States Food and Drug Administration approved pemetrexed for treatment of malignant pleural http://www.news-medical.net/health/What-is-Mesothelioma.aspx - mesothelioma . However, there are still unanswered questions about the optimal use of http://www.news-medical.net/health/What-is-Chemotherapy.aspx - Chemotherapy , including when to start treatment, and the optimal number of cycles to give. Cisplatin in combination with raltitrexed has shown an improvement in survival similar to that reported for pemetrexed in combination with cisplatin, but raltitrexed is no longer commercially available for this indication. For patients unable to tolerate pemetrexed, cisplatin in combination with gemcitabine or vinorelbine is an alternative, or vinorelbine on its own, although a survival benefit has not been shown for these drugs. For patients in whom cisplatin cannot be used, http://www.news-medical.net/health/Carboplatin-What-is-Carboplatin.aspx - carboplatin can be substituted but non-randomised data have shown lower response rates and high rates of haematological toxicity for http://www.news-medical.net/health/Carboplatin-What-is-Carboplatin.aspx - carboplatin -based combinations, albeit with similar survival figures to patients receiving cisplatin. In January 2009, the United States FDA approved using conventional therapies such as surgery in combination with radiation and or http://www.news-medical.net/health/What-is-Chemotherapy.aspx - Chemotherapy on stage I or II http://www.news-medical.net/health/What-is-Mesothelioma.aspx - mesothelioma after research conducted by a nationwide study by Duke University concluded an almost 50 point increase in remission rates. ImmunotherapyTreatment regimens involving http://www.news-medical.net/health/What-is-Immunotherapy.aspx - immunotherapy have yielded variable results. For example, intrapleural inoculation of Bacillus Calmette-Guérin (BCG) in an attempt to boost the immune response, was found to be of no benefit to the patient (while it may benefit patients with http://www.news-medical.net/health/What-is-Bladder-Cancer.aspx - bladder cancer ). http://www.news-medical.net/health/What-is-Mesothelioma.aspx - mesothelioma cells proved susceptible to in vitro lysis by LAK cells following activation by interleukin-2 (IL-2), but patients undergoing this particular therapy experienced major side effects. Indeed, this trial was suspended in view of the unacceptably high levels of IL-2 toxicity and the severity of side effects such as fever and cachexia. Nonetheless, other trials involving interferon alpha have proved more encouraging with 20% of patients experiencing a greater than 50% reduction in tumor mass combined with minimal side effects. ------------- Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear |
Posted By: SagePatientAdvocates
Date Posted: Mar 04 2010 at 2:39pm
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Dear Connie, safe journey and good luck... we will all be with you... love, Steve ------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates |
Posted By: MaryinSarasota
Date Posted: Mar 04 2010 at 2:51pm
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Dear Connie, Have a safe and informative trek to Buffalo. You have many positive thoughts guiding your way. Love, Mary ------------- 53 @ Dx 5/08 Stage 1, grade 3, IDC 1.6 cm, 0 nodes, TNBC, lumpectomy, chemo TAC-6, radiation-34 12/18/08 NED-10/09, PBM w/TE recon. 7/10, removal of TE/infec 8/10. CT chest. Rec fat-graft & stem cells |
Posted By: mainsailset
Date Posted: Mar 04 2010 at 4:01pm
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We shall overcome ------------- dx 7/08 TN 14x6.5x5.5 cm tumor 3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear |
Posted By: dmwolf
Date Posted: Mar 04 2010 at 4:08pm
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Good luck tonight. We'll be sending in a pillowy cloud of love to soften every step of the way. Love, Denise ------------- DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10. |
Posted By: Lisa L
Date Posted: Mar 04 2010 at 5:30pm
Thinking of you Connie. Good luck in Buffalo.
------------- Dx 8/05 age 43 mast & lat flap 10/05 Triple neg BRCA neg IDC 4.5cm rt br 0/1 sen node 6 A/C 5 Taxol, 25 rads 11/05-6/06 Central Illinois Currently NED |
Posted By: MsBliss
Date Posted: Mar 04 2010 at 6:34pm
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Dear Denise, Having rads to the chest wall after mastectomy increases some DNA issues in those deeper structures of the lungs; could it have set up the cell changes for this issue in the pleura so that it mimics meso? There is only one cause of mesothelioma--asbestos. Still, I have met people exposed to asbestos in fairly high amounts and 20 years later, no sign of meso at all. Wouldn't it be unbelievably rare and odd for this to occur? How can we help her get the keratin and other molecular stains and tests she needs to be absolutely sure they have the diagnosis correct? All my best, Bliss |
Posted By: dmwolf
Date Posted: Mar 04 2010 at 6:47pm
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Hi, Bliss. If her respirologist is worth his weight in salt, he will know what to test to rule out differential diagnoses. I can totally imagine how radiation damage could have caused a new cancer, though oczam's razor might argue otherwise (the principle that if you hear hoofbeats, think horses, not zebras). I guess the fear is that since the simplest possible explanation is that this is breast cancer, he will stop his inquiry with that. TTF-1 is supposed to be helpful for differential diagnosis. Wait, here's an article on radiation-induced mesothelioma: " javascript:AL_get%28this,%20jour,%20Cancer.%29; - Cancer. 1995 Aug 1;76(3):437-41. Malignant pleural mesothelioma after radiation therapy for breast cancer. A report of two additional patients.http://www.ncbi.nlm.nih.gov/pubmed?term=Shannon%20VR%5BAuthor%5D - Shannon VR , http://www.ncbi.nlm.nih.gov/pubmed?term=Nesbitt%20JC%5BAuthor%5D - Nesbitt JC , http://www.ncbi.nlm.nih.gov/pubmed?term=Libsh*tz%20HI%5BAuthor%5D - Libsh*tz HI . Department of Medical Specialties, University of Texas M. D. Anderson Cancer Center, Houston 77030, USA. BACKGROUND. Malignant pleural mesotheliomas (MPMs) are rare tumors. The association of these tumors with asbestos exposure is well established. Induction of malignant mesothelioma by nonasbestos-related causes also has been reported in the literature, although the number of documented cases is extremely small. Two additional patients with malignant pleural mesothelioma many years after radiotherapy for breast cancer are reported. METHODS. The observations as reported in the literature on the involvement of radiation in the development of MPMs are reviewed and compared with the authors' clinical experience. In a retrospective random review, 1000 patients who received thoracic irradiation at M. D. Anderson Cancer Center were studied for histologic and radiographic evidence of MPM. The selection criteria included the development of a unilateral pleural effusion years after successful treatment with thoracic irradiation for a proven malignancy. Patients with a history compatible with asbestos exposure were excluded from the review. RESULTS. There have been only three previous cases of documented MPM associated with thoracic irradiation reported in the English literature. A review of the experience at our institution has demonstrated three patients with radiation-induced MPM. One patient has been reported elsewhere. Details of the other two patients are discussed in this paper. CONCLUSIONS. Nonasbestos-related causes of MPMs are rare. The additional two patients lend added support to the association between thoracic irradiation and the development of MPM. The development of a unilateral pleural effusion occurring years after successful treatment of a proven malignancy with thoracic irradiation should alert the clinician to the possibility of MPM. PMID: 8625125 [PubMed - indexed for MEDLINE] "------------- DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10. |
Posted By: Carol (Tenn)
Date Posted: Mar 04 2010 at 6:55pm
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Shuffle on down to Buffalo....lalalala...I'm singing and dating myself all at the same time. Good Luck Connie...You are in our prayers.. ------------- St 2 Gr 3, A/C/T, DD Radiation x35 Rec chest wall 07/09 Radiation x28 NED 10/24/11 NED 10/5/12 NED 03/15/13 |
Posted By: TNBC_in_NS
Date Posted: Mar 04 2010 at 7:09pm
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Denise I think we are right on with mesothelioma! I didn't notice how far out of radiation that Connie is but this feels like it could be right! Hopefully, the docs in Buffalo will clue into this and suggest the treatment she requires to her resp. onc in Toronto. Many hands make light work. Have you heard from Connie yet? It is 8 pm here and 7pm where Connie is. Did her hubby go with her? do you know? I didn't even think about her going alone... Oh my, my head... Thanks for the info Denise. I am sure Connie will be happy to see all the wonderful posts that have been left today. Steve is away but I am sure he will find more too. Take care, Denise, your sister on this journey Helen in NS ------------- Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear |
Posted By: trip2
Date Posted: Mar 04 2010 at 7:57pm
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Connie my friend,
I am so sorry I have not replied sooner, have been out of town. This forum and the quick action they appear to be taking with you will get you thru this, I'm so glad you won't have one of those long waits.
All my love and prayers the scan goes well and soon you will be charging thru this and be well again.
You are such an amazing women going thru your treatments then helping others over the years.
Your knowledge of what works and what doesn't, your sense of humor. We will be here for you always as you have been here for us.
Of course you are devastated, my heart breaks with you Connie, so wish I could be there with you. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: dmwolf
Date Posted: Mar 04 2010 at 8:21pm
Helen, the most likely cause is TNBC (horses not zebras), though ruling out other possibilities like mesothelioma or lung ca could be important. Any way you slice it, though, it sucks. 
------------- DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10. |
Posted By: mainsailset
Date Posted: Mar 04 2010 at 10:30pm
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Denise, when I looked up the different elements of her report I kept coming back to: "GCDFP-15, is gross cystic disease fluid protein from the breast: The report says Connie is negative, so are we inferring that this is not a met?
The definition of "Adenocarcenoma" that I found said that it is a cancer originating in glandular tissue; it is a non small cell lung carcinoma
There's obviously alot more to find out here but I'm going to bed tonight hoping that this is not a met from TNBC simply because I don't want this to be aggressive. I always take my positives where I can find them. ------------- dx 7/08 TN 14x6.5x5.5 cm tumor 3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear |
Posted By: 123Donna
Date Posted: Mar 05 2010 at 11:33am
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Connie, Please post and give us an update. We're worried about you. Sending you big hugs, Donna ------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
Posted By: dmwolf
Date Posted: Mar 05 2010 at 12:11pm
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Mainy, breast cancer, whether ductal or lobular, is also an adenocarcinoma. Though GCDFP-15 is supposed to be breast specific, about 40% of women with MEP from breast cancer are negative in this marker. My understanding is that MPE from breast cancer actually have a *better* prognosis than MPE from most other sources, so don't assume that lung would be better. Connie is generally in good health, and has no other sites currently. I think that with treatment she's going to be ok for a long time. Do you hear that, Connie? This sucks, but you are going to enter treatment and get your life back very soon. This is the hardest part, right now, with all the fear and uncertainty. Love, Denise ------------- DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10. |
Posted By: Terri
Date Posted: Mar 05 2010 at 12:51pm
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Connie,
The pooches, cats & I are sending you & Paco lots of LOVE today and every day...
Stay strong.Love,
Terri ------------- IDC DX 8/17/07 (age 41) Stage 1 Grade 1-2, 1.35 cm 2 nodes neg, Lumpectomy 10/07 Chemo: FEC 100 x 6, 35 rads BRCA 1/2 NEG PET/CT & Brain CT Nov 09 Brain MRI Aug 2012 NED |
Posted By: mainsailset
Date Posted: Mar 05 2010 at 1:18pm
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Thanks Denise, I'll take your positiveness over mine any old day. ------------- dx 7/08 TN 14x6.5x5.5 cm tumor 3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear |
Posted By: MsBliss
Date Posted: Mar 05 2010 at 2:32pm
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Mainy and Denise--re adenocarcinoma. I think what you meant was that the breast is a gland....therefore, the adenocarcinoma domain applies to that discussion, so to speak. |
Posted By: Donna Z
Date Posted: Mar 05 2010 at 3:32pm
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Message from Connie "Would you please let everyone know I am running around, picking up slides, films, etc. pathology, making CT CD's to be ready for Monday. Please thank everyone for their help....but I want to be prepared" The above message is from Connie. She is picking up and appreciating every bit of info and support that people are posting for her so please continue to do so. She will see her onc on Monday by the sounds of it and wants to be ready to discuss every potential option. This includes not just what will be paid for in Canada but what will be her best choice based on her diagnostic specifics. If we can send her as much support as possible she will feel it across the miles. She has the best oncologist so we can only hope all available options will be discussed and Connie has all the knowledge needed to advocate and make choices and get 2nd opinions. She is quite sure it is a basal tn she is dealing with but of course everything has to be ruled out. luv Donna ------------- Dx 03/09 TN, Stg 2a, gr 3, 1.7 cm Taxol X 12, FAC X 4, segmental mastec Sept 10/09, 1 pos/29, from Canada, Treatment MDAnderson, rads X 30 started Oct 29/09. Zometa start Nov 24/09 |
Posted By: mainsailset
Date Posted: Mar 05 2010 at 5:12pm
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Thanks Donna. I'm still researching, am going university to university, here's what I found at Johns Hopkins http://linkinghub.elsevier.com/retrieve/pii/S0169-5002%2808%2900368-1 - http://linkinghub.elsevier.com/retrieve/pii/S0169-5002(08)00368-1 a pilot study
....for whatever it's worth
New Trials on fast track http://www.cancer.gov/recoveryfunding/page13 - http://www.cancer.gov/recoveryfunding/page13
Medifocus introduces new trial IN TORONTO! of Microwave breast cancer treatment - well color me curious http://www.medifocusinc.com/ - http://www.medifocusinc.com/
------------- dx 7/08 TN 14x6.5x5.5 cm tumor 3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear |
Posted By: TNBC_in_NS
Date Posted: Mar 05 2010 at 6:19pm
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Thanks for the update DonnaZ!!! Connie sounds like she is getting it all tog. to have her questions ready for this new battle! That is GREAT!
Denise, Mainy, Bliss, and the other sisters are getting all the info they can muster. Hopefully, one or all of us will find the right technique! Maybe after Monday when Connie sees her onc we will have more information to go on. Thanks Denise for pointing out the difference between horses and zebras, that was good.
 Connie we are here for you and remember when you can't breathe, we are breathing for ya!!!!
Take care and post when you can either through yourself or DonnaZ or anyone. We all love you so take care, take lots of notes, take someone with you and stay safe on your travels.
Your sister on the journey, Helen in NS ------------- Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear |
Posted By: mainsailset
Date Posted: Mar 05 2010 at 10:28pm
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Just heard from Connie. She wanted to thank everyone for all the kind thoughts and many good ideas. Her plan for now is to read over the weekend and then on Monday listen to her onc's thoughts and what plans the onc will offer. She feels better, exhausted but I have to say her voice was strong and she is well on her way to mustering her fighting spirit.
------------- dx 7/08 TN 14x6.5x5.5 cm tumor 3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear |
Posted By: TNBC_in_NS
Date Posted: Mar 05 2010 at 10:50pm
Thanks for the update Mainy! Keep strong Connie, we are all with you! 
------------- Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear |
Posted By: 123Donna
Date Posted: Mar 05 2010 at 11:23pm
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Connie, Please know we are all beside you in this new fight. As you mentioned on the post for Pam, when you go into your appointment on Monday with your onc, you'll have a roomful right beside you. You may not see all of us, but we'll be there in spirit, by your side and holding your hand. We'll be there to hold you up when you don't think you can do it by yourself. Donna ------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
Posted By: MsBliss
Date Posted: Mar 06 2010 at 1:39am
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Dear Connie, I just lost my pm to you....I will try and reconstitute it and re post it to you when your mail box is not full. Much love and hugs to you (and Paco!) Bliss |
Posted By: tofu
Date Posted: Mar 06 2010 at 5:32am
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Dear Connie, I am sorry for you. While I traveled in South America, I worried about your e-mail in which you had wrote about your check-up results. I don't know about malignant pleural effusion, and I read about it and knew that it could be treated well for maintaining QOL. And I pray for good information in Baffalo New York. Tofu with love ------------- Aug/07 age:48 IDC TNBC Neo-adjuvant EC+T Feb/08 Mastectomy & reconstruction with DIEP-flap. 4.7x2.7cm N0 g3 May/08-Apr/09 Xeloda to4f.blog110.fc2.com |
Posted By: unklez
Date Posted: Mar 06 2010 at 12:39pm
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Dear Connie, We are with you.... ------------- Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads. |
Posted By: Carol (Tenn)
Date Posted: Mar 06 2010 at 1:17pm
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Dear Connie,
You know where I stand in your support. We at SS continue to pray everyday for wonderful results...big big Hugs..
Carol ------------- St 2 Gr 3, A/C/T, DD Radiation x35 Rec chest wall 07/09 Radiation x28 NED 10/24/11 NED 10/5/12 NED 03/15/13 |
Posted By: outnumbered
Date Posted: Mar 06 2010 at 3:02pm
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Hi Connie,
I just wanted you to know that I too am praying for you. You were one of the many that were there for me when I first came here. So giving and so loving. I hate that you are in need now.
I get so angry at this damn disease!!!! Anyway, I love you and will be praying for you along with everyone else!
XOXO ------------- ~Sara DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG BMX (nipple-areola-sparing) 8/5/08 Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09 BSO 9/3/09 NED since 08/05/2008 |
Posted By: SagePatientAdvocates
Date Posted: Mar 06 2010 at 6:18pm
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Dear all, had a wonderful talk with Connie this morning... she is busy doing research and trying to figure it all out...no surprise there, huh?  I tried to convince her to let the docs take a shot at explaining it to her first but I guess it is no easy feat to meet with a doc in the first place so she wants to be prepared with her questions.I must admit she gave me a good laugh in the midst of all this because I guess someone came to the door and Paco barked really loudly. It seems that Paco is her protector and people are asking questions to Connie from the doorway because Paco is keeping guard...No one can get near her...Connie was laughing a bit when she explained it and it was nice to hear her laugh..and then she told me the whole history of Paco's family and how he comes from a long line of 'stoic' dogs. Fascinating, great, stuff. prayers, continue dear Connie.. with my love, Steve ------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates |
Posted By: janinvan
Date Posted: Mar 06 2010 at 7:20pm
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CONNIE--- Be strong, do your research, ask important questions, etc.
Love, Janice... Vancouver
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Posted By: Cheryl51
Date Posted: Mar 06 2010 at 7:46pm
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Connie, I'm sending you lots of healing love. Cheryl ------------- Diagnosed 3/07, Stage IIB, Grade 3, 2/10 nodes positive |
Posted By: dmwolf
Date Posted: Mar 06 2010 at 9:23pm
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Hi, Connie. Just stopping by to say hello and send my love. I hope you are finding little oases of calm and happiness in your day today. We are with you, sweetie. Love, Denise ------------- DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10. |
Posted By: 123Donna
Date Posted: Mar 06 2010 at 10:24pm
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Connie, I've been thinking of you and Pam all day. I hope you're hanging in there and resting as much as possible. How's Paco? I'm sure he's by your side standing guard over you. Donna ------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
Posted By: cg---
Date Posted: Mar 07 2010 at 8:46am
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Dear friends,
I am trying to sort things out and I need your help regarding the pleural effusion analysis. The slides will be taken for review at other facilities....but I need to understand what impact this cytopathology report would have on future treatment options. Carboplatin may be a potential chemotherapy agent...but I see that Carboplatin used as treatment may exclude me from potential PARP inhibitor.
(It would be almost impossible to ask me to not think about this because I do not want to jump at a treatment plan without knowing the potential limitations it would put on future regimens). I do not want to box myself in. For me to have mental and physical comfort I need to have already formulated a plan myself, then contingency plans. I need to understand more of this cytopathology.
"Malignant cells are present suggestive of metastatic adenocarcinoma. Immunohistochemical stains are performed and malignant cells are positive for CKAE1/AE3 and negative for GCDFP-15. Mesothelial cells positive for calretinin are noted."
If we have any resident laboratory geeks please reveal themselves.
Those waves of nausea and fear have become my constant companion...Monday seems a lifetime away.
Love,
Connie
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Posted By: mainsailset
Date Posted: Mar 07 2010 at 10:09am
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It just occured to me that Caryn Rose had been able to get through to Constantine Kaniklidis and since I've always thought his geekdom to be superb, maybe he can be of some help. If he isn't personally available, I often go here http://breastcancer.evidencewatch.com/ - http://breastcancer.evidencewatch.com/ to wade through the weeds of things
I think you would probably have your best luck going over to No Surrender and asking them for a hand to contact him.
Still workin on it. M ------------- dx 7/08 TN 14x6.5x5.5 cm tumor 3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear |
Posted By: peach
Date Posted: Mar 07 2010 at 10:10am
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Best of luck Monday you'll be in my thoughts and prayers.
Pat ------------- Dx 5/07 TNBC IDC Stg.2, Gr.2, Sentinel node 0/1 BRCA- Lumpectomy,Chemo(AC-T DD)Rads |
Posted By: MaryinSarasota
Date Posted: Mar 07 2010 at 10:23am
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Connie, No geek here, just sitting at my desk and thinking what I would be doing if I were you. It is the hardest part to wait on anything that is this emergent. I too have used the No Surrender website and am using his regimen for keeping the cancer at bay. Can't hurt at all to have him contact you. Do you need any good CDs or books to keep you busy? I have bunches of them. All on audio. Send right over via email. Just let me know. We got your back dear one. Mary ------------- 53 @ Dx 5/08 Stage 1, grade 3, IDC 1.6 cm, 0 nodes, TNBC, lumpectomy, chemo TAC-6, radiation-34 12/18/08 NED-10/09, PBM w/TE recon. 7/10, removal of TE/infec 8/10. CT chest. Rec fat-graft & stem cells |
Posted By: SagePatientAdvocates
Date Posted: Mar 07 2010 at 10:45am
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Dear Connie, I am afraid that I am about to write and suggest something and it is not what you have requested so please don't be angry with me. I feel it is extremely important to get a second opinion and explanation from another pathology lab in the U.S. You should be seen at a major NCCN facility in the states, in my view, that has experience in TNBC and other cancers. We discussed, privately, Dana Farber and MD Anderson. I would add Memorial Sloan Kettering in NYC, UCLA, Mayo Clinic, Univ. of Michigan and UCSF to that list, and there are others..Roswell is another thought... I think you need someone, now, to look at you globally and "work you up" according to that institution's standards/protocol. It is also important as we discussed to try and see if you can find out quickly if you have the BRCA mutation. Certain chemotherapies have not been particularly effective with BRCA carriers and again, in my view, it is important for you to know so that your physicians can tailor your treatment accordingly. It also may be important for other family members to know about BRCA if you are positive...I also am aware, as we discussed, that you have been turned down in Canada for the test. You can get it done, though. In my view, it is dangerous to rely on your own research or anyone's here to self-diagnose. Please understand, Connie, I greatly respect your intellect and those here who with good hearts, I know will make every effort to help you by doing research BUT that research should be a supplemental exercise to enable you to ask good questions as opposed to coming up with your own treatment plan. You need to rely on your medical team for that...and whatever they say, I would get a second opinion...and hopefully the second will re-confirm the first. I know Monday seems like a lifetime away for you but it will be here soon enough...and it will bring some clarity....and a second opinion will hopefully reconfirm the first but maybe it won't...I would focus your efforts on getting that second opinion and not do research when you are so emotionally upset and anxious (and that is totally, totally understandable). I think you need a crystal clear head now so that you can assimilate all the information you will be told tomorrow. I would ask the doc tomorrow to explain and re-explain so that you "get it." I would also suggest you ask the doc tomorrow to give you specific references that can help you understand so that you can do your own research. Plus, of course, a detailed written report. I think the research you do post-explanation tomorrow will be a lot more focused and productive when you are armed with explanations and references to the literature from your doctor tomorrow. Maybe you can even send an email today to the doc so that she is more prepared for your meeting. Once you have the input from tomorrow and have a chance to focus your research efforts I believe your next appt. at a major NCCN center in the states will be even more productive and hopefully, I pray, you will get even more clarity and a game plan that seems to make the most sense. I also hope that you will share your doctor's explanations and perspectives with us so that we can do some research to help you. In that way our research can be more focused and hopefully productive as well.. Again, I am sorry..I know that is not what you want to hear and perhaps someone here will be able to help you in exactly the way you are requesting. I hope they can. From the work I have done already on your situation...it is very complex with no clear, precise answer... As you know that is often the case in medicine. I am attending a ASCO GU conference and yesterday, for the first time, they had a mock tumor board session with a number of experts participating from medical oncologists, radiation oncologists, GU surgical oncologists etc. in front of 2000 prostate, bladder etc. specialists...They presented different cases and the experts had disagreements and then they polled the audience about vastly different treatment plans..and on one of the cases the breakdown was 31, 27, 27 % and some smaller percentages. The moderator said, 'tongue in cheek', "well I am glad we had consensus on that one." The audience laughed, but it is not funny; it is the reality of medicine at times. I suggest you put yourself in the hands of experts..try to glean as much information from what they say, pass it along to us and then we can help you do the research. Connie, does that make sense? Is there anyway today you can craft an email to your Monday doc, read about second opinion options and then maybe read a book, your bible, listen to some music, see a movie or try to get some badly needed sleep...You told me you have been going non-stop on this...your body needs some rest as does your mind...I know it may be mission impossible but that's my suggestion..and I know you know it is made with love and concern for you.. your friend, always, Steve p.s. a true story. Last year at the FORCE conference one of the speakers who is a doctor, breast cancer expert and genetics expert told us her story. She went for a mammogram and she went to the breast oncologist to discuss the results. He told her "you have breast cancer" and then went into a lengthy explanation of what her options were. He then asked..." what do you think about what I said?" and she replied, " Sorry, I have not heard one word since you told me I had breast cancer." This consummate professional totally shut down when it came to her own dx. I don't think I will ever forget that story and that is why I try to accompany folks, to their docs, when I am trying to help them. I find my taking notes is important...Some folks take tape recorders..probably even better but sometimes doc are not thrilled with tape reecorders..I can't tell you how many times a patient will say to me.."what did she/he say?", or just hear parts of sentences. Connie, I wish I could be with you tomorrow at the doctor's office...I will be there in spirit..yes I know that is not the same but please know my heart is with you and I do want to help. anyhow, I hope your head will be clear and I hope the explanations will clarify things and I hope your anxiety will be manageable. You are faced with a very tough situation...we will be with you every step of the way... it may not seem like it..the printed word can be difficult...but the above is written with my concern for you and a feeble (the words don't come close to expressing how I have agonized over this) attempt to tell you how I feel in a gentle, yet constructive, and loving way. I pray you take it in that spirit. ------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates |
Posted By: cg---
Date Posted: Mar 07 2010 at 10:49am
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Dear Mainy,
There is a forum family member that is astounding in her ability to dissect pathology reports. I hope she sees this message. I have read her insights over on the NoSurrender site and hopefully she can lend her expertise to my cytopathology report.
Mary,
I have movies galore, whole series of books (my daughter buys hard cover mystery and detective books by authors for $1.00 and she literally has hundreds)...she has put the movies in, put a book in my hand and I cannot seem to focus on them.
The only thing that truly does not allow me to think is when I put my head set on, have my beloved (Paco) by my side and let the dictation drown out the thoughts that are invading my mental space. I am looking out at a beautiful day, in a sunny room. I have answered the phone to kind friends and neighbors who have contacted their churches, prayer circles, (if you can believe even a large Mennonite congregation in Florida (3000 families), to Dutch reform, born again Christian community, and someone leaving for Rome today will have a mass said for me at one of the cathedrals. I am humbled beyond words.
Our dear friend and neighbor was recently diagnosed with small cell lung carcinoma. His wife was absolutely beside herself crying hysterically last night, "We get better care for our dogs than I can get for my husband at the cancer clinic". She called and asked how I did it on my own the first time and now again...I told her the simple truth...I have never been alone. The support staff I have are not paid to help me ... it is not their job....they do not ration their resources and information. The offer up best of them, all that they know is offered without condition or payment. You are all my difference.
Love,
Connie
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Posted By: dmwolf
Date Posted: Mar 07 2010 at 11:11am
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Connie, I think Steve's advice is really good. It's time for a second opinion. As for carbo - yes, if you go on it you will not be eligible for the carbo/gemzer/parpi trial, and that would be a shame. Maybe reserve those drugs for the trial? (You could start with taxol & avastin?) As for your path report, I looked up some information, and this is what I got out of it: (1) you have adenocarcinoma cells floating in your PE, which probably means breast cancer, though it could mean some other cancer, like a form of lung or mesothelial, (2) your cells do not test positive for one of the breast cancer markers. Then again, 40% of metastatic bcs also do not test positive for that marker, so this does not rule out anything. As for the other cells, I didn't look up the significance of what they found. It was hard to understand, as those cells were not described as malignant, but neither were they called normal. I would want more information on what exactly those comments mean. Waves of nausea and fear - I can relate, and I'm so sorry. We are with you every step of the way. Mainy, you are talking about Maire, right? We could really use her perspective right about now, couldn't we? I also totally agree in your advice to get Edge on this. He is as knowledgeable as they come. Love, Denise ------------- DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10. |
Posted By: mainsailset
Date Posted: Mar 07 2010 at 12:19pm
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Steve, from the standpoint of a 2nd opinion of course Dr. Dent that Connie is going to is certainly at the top of her field and I agree that after seeing her and gleaning from her input things are going to be greatly clarified. I'm assuming that she would also ask for more clarity on the path analysis.
In trying to be a good patient I always felt it was important to do my own research ahead of a onc meeting so that I would at least have a fighting chance to understand the 'language' of the meeting, not necessarily to push my research on the doctor. And I think that's what Connie's first round of research is aimed at, just learning what's on her page.
And I'm glad you brought up the second opinion. In that regard, does anyone have good insight as to what's regionally available to Connie's location that would be a valuable source of a second opinon? Who and where are the triple negative specialists. I'm just familiar with west coasties and think of Melinda Telli at Stanford...so I'm not of much use. I know that one can send a CD file to Stanford and they will do a workup for you long distance.
------------- dx 7/08 TN 14x6.5x5.5 cm tumor 3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear |
Posted By: cg---
Date Posted: Mar 07 2010 at 12:26pm
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Dear Steve,
One hundred people will tell you what you want to hear...but only true and caring friends tell you what you need to know. I appreciate directness and honesty. It saves much time and misunderstanding.
I had mentioned that I arranged my second opinion at an NCI institute in the States and had all their work-up before I even went to my first oncology appointment in Canada at the time of my initial diagnosis. This time I did not have the opportunity...so I need to have a data base of information of my own so that I may formulate questions to ask. You unknowingly presented another option when you realized my father and his whole family were from Warsaw. I most certainly will pay to have the testing. But, had you not shared from your vast knowledge of BRCA mutations - the average person would not have known that valuable piece of information. Our Caroline36 had no breast cancer in the family and to her great shock after she paid to have the BRCA testing - she found out that she was BRCA1+.
Tomorrow, I will report verbatim the diagnosis, proposed treatment plan, etc.
I truly believe what we do not know hurts us more and I do not do ostrich very well.
Thank you for your candor,
Connie
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Posted By: caro36
Date Posted: Mar 07 2010 at 3:16pm
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Dear Connie, I haven't been on the forum much so I just saw your posting. I'm in total shock. I wish I could write such good postings as the others.Please know a candle is burning for you in in the Netherlands.
I'll be tinking of you on monday.
Very BIG hug from Holland,
Caroline
------------- lumpectomy 9/2/08 6mm TN tumor 38 rads, 13 boost 6xTAC finished 04/10. BRCA1+ bill. mastectomy, imm. reconstruction using tissue exp 01/10 |
Posted By: MsBliss
Date Posted: Mar 07 2010 at 5:49pm
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Dear CG, Is this all the data that you have from the first pathology? "Malignant cells suggestive of metastatic adenocarcinoma. Immunohistochemical stains are performed and the malignant cells are positive for CKAE1/AE3 and negative for GCDFP-15. Mesothelial cells are positive for calretinin." Please let me know. Bliss |
Posted By: mainsailset
Date Posted: Mar 07 2010 at 6:01pm
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Bliss, your pm box is full! ------------- dx 7/08 TN 14x6.5x5.5 cm tumor 3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear |