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Post Options Post Options   Thanks (0) Thanks(0)   Quote stephensk Quote  Post ReplyReply Direct Link To This Post Posted: Apr 15 2011 at 3:37pm
Hi Steve,
Please contact me.  I see that you are a senior user and a wealth of information to many.   Information is power against this horrible beast! Seems we both may live in the Phila area?  I would like to chat.  Thanks Kathy  TN  BRACA 1 +   Dx 5/09  stage 1 no nodes.  6/09 Bilater mx., hysterectomy, immed reconstruct DIEP, AC/ T  plus Avastin in clinical trial.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Apr 15 2011 at 4:23pm
Dear Kathy,

I would be happy to talk with you and I just sent you my contact info...

sorry you are BRCA1+ and have dealt with so much already...

I will be arriving in Philadelphia Friday April 29th and attending a LBBC conference on Living With Metastatic Breast Cancer...as part of the conference there will be a workshop on 'brain mets' with Dr. Carey Anders and another workshop on' how to treat metastatic TNBC' with Dr. Cliff Hudis..


hope to hear from 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote rigatonismom Quote  Post ReplyReply Direct Link To This Post Posted: Apr 16 2011 at 8:09am
Hi All,
I had the lumpectomy and axillary node resection on Monday and then the appointment with the surgeon yesterday and I guess the news isn't the greatest but it isn't horrible (I think). I need to do more research. The turmor was still there but had gone from 3.4 cm to .6cm. The same with lymph nodes. There were 3 sentinel nodes with 1 positive. Total nodes taken were 22 with 3 positive. The nodes went from over 4 cm to 9 mm. The path report says that there was partial response to the chemo. The suregeon said that this meant that the area that will be radiated will include the axillary area also. 
 
Any comments?  What should I know about or look at on the path report?
 
Nita

DX 09/10 TNBC Stage3c, grade3, Tumor 2.7cm, chemo started 9/29/10, AC x4, Taxol x12, lumpectomy 4/11/11-tumor .6cm, 3+/22 nodes, radiation x 30 finished 6/30/11.Clinical Trial Cisplatin,PARP 8/23/11
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Barbi Quote  Post ReplyReply Direct Link To This Post Posted: Apr 16 2011 at 10:31am
According to my oncologist, that restages you (for prognastic purposes ONLY) to stage 1 which I think gives you a 70% of no recurrence EVER!!  Same as me.  I was initially disappointed (OK< I might still be) that I didn't have a pathologic complete response, but happy for the huge increase in my survival odds from my stage 3C (original staging).
 
Get into PT for arm recovery (it's sooo helpful). And I was told by the PT to save some of my visits for after radiation as my chest/arm will tighten up from that and they can help release it.
 
Congrats on the good (Great!) response Nita.
Barbi
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Apr 16 2011 at 11:19am
Dear Nita,
I am so sorry you didn't get the complete pathological response that is the best of all scenarios.

You asked for comments and the following are strictly Lillie's thoughs:
Has the surgeon suggested a complete mastectomy? Has the oncologist suggested further chemo? To me those would be options I would explore. The chemo worked, maybe you need a few more treatments. Personally, lumpectomies scare me; I had a stage 2b diagnosis and I wanted the whole breast off. Less tissue there for recurrence. Also, you could still do radiation.
Another also, please don't start reconstruction until later when things are more stable. (remember Nita, these are just my medically unprofessional thoughts, but it is what some people do for more assurance that they have done all they can do.)

Dear Nita, I wish you the very best of luck with whatever decisions you make from here on out. I am praying for you and you know we all love you.

God Bless,
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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Apr 16 2011 at 12:30pm
Dear Nita,

I echo Lillie’s comments regarding being disappointed regarding your lack of pCR...

you asked for suggestions so here is my unprofessional thought-

If you have the strength, good insurance and the willingness to get a second opinion I would get on a plane and fly to Houston and see a Breast Medical Oncologist at MD Anderson Cancer Center(MDACC)...My guess would be that Southwest flies non-stop and it is probably a 2 hour flight...

You are at a crucial stage in your cancer treatment program and I think you should get some new minds on your situation. If they recommend exactly the same plan as you are on now there is comfort in knowing that you are on the correct course but they may recommend something else. Then you will have a decision to make as to a new plan of action. I am not a medical professional and will not give you medical advice but having a second opinion, I feel, might be helpful to you.

I am a great believer in second opinions especially when they come from oncologists at a National Comprehensive Cancer Network facility (NCCN) facility. The most comprehensive centers are the NCCN ones and MD Anderson seems closest to your home. MDACC has been consistently ranked the number one cancer center in the U.S. 

If you would like, I can walk you through how to get an appointment with MDACC. You can self refer yourself online. I will send you my contact info in a PM and please call me if you wish. Again, unfortunately, if you don’t have good insurance MDACC may be a difficult option. In that case it seems the only National Cancer Institute (NCI) facility in New Mexico is at the University of New Mexico....Perhaps you are going there already?


If you are being seen at Univ. of New Mexico and you can swing it physically/financially I would still suggest you go to MDACC. 

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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote rigatonismom Quote  Post ReplyReply Direct Link To This Post Posted: Apr 16 2011 at 3:45pm
Thanks to all for your responses.  I have an appointment with the radiation onc next week and with my regular onc the next week.  Steve I doubt if my insurance would allow a trip to Houston.  It is a private hospital plan.  Our radiation center is an MD Anderson facility though.  I don't know if that has any bearing.  My oncologist is in a consortium with the group at UNM and the NCI group.  My treatment plan calls for 6 weeks of radiation in about 3 weeks.  My path report did say that my pathologic staging is yT1bN1a. 
Nita
DX 09/10 TNBC Stage3c, grade3, Tumor 2.7cm, chemo started 9/29/10, AC x4, Taxol x12, lumpectomy 4/11/11-tumor .6cm, 3+/22 nodes, radiation x 30 finished 6/30/11.Clinical Trial Cisplatin,PARP 8/23/11
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Katastrophe Quote  Post ReplyReply Direct Link To This Post Posted: Apr 23 2011 at 1:05pm
Hi Guys, Its the Thunder From Downunder, back after what seems like an eternity since I have been here. Took me forever to remember how to get back on and my Nick. I think I have lost several brain cells of late. I hope everyone is well. I am yet to read everyones posts. I am sorry its taken me so long to come back. I have had alot of stuff going on over the past few months and I have not felt so chipper. I am still cancer free as of my last check up in March. Its a shame we can't give our lives a dose of Chemo and Radiation and eliminate the cancers that can grow from life in general.
I hope you all have a very Happy Easter. Eat lots of chokky eggs ( I certainly have) Ive been celebrating Easter for weeks (*wink*) They say the early bird catches the worm, my early bird ate the worm (AKA - Easter Eggs) and got very very fat!
Ive missed you all very much.... just needed some time and space.
Luv Kat xxx
Age 49. Stg2 gr3 19mm lump in L/br 1 lymph node in L/br 3/14 lymph nod under left arm full clear bil/mast 6rds Chemo 3wkly 25rds Rad 18rds of Avastin finished treatment on 19th August 10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sue Quote  Post ReplyReply Direct Link To This Post Posted: Apr 23 2011 at 1:44pm
Welcome back Kat.  So good to hear you are still cancer free.  When you read the recent posts, you will see that life has been a challenge for many of late here too, and we are always here for each other.  

Know what you mean about the chokky eggs! Hope you have a very happy Easter.  

Hugs,
Sue
Dx 7/10, age 53. TNBC left breast, stage I, grade 3, IDC 0.5 cm, DCI 2.5 cm, 0/8 lymph nodes neg. BRCA-. T/C x4 finished 2/09/11, rads x34 finished 4/21/11.          
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Genie Quote  Post ReplyReply Direct Link To This Post Posted: Apr 23 2011 at 4:01pm
Kat, so glad to have you back. I have missed your wonderful sense of humor. Glad to hear that you are still cancer free.

Those chokky eggs are a weakness of mine and I don't even have an excuse for having any in the house - grandchildren all grown and no great-grandchildren.

Have a blessed Easter!

Hugs from San Antonio, TX
Genie
DX 3/10/08 at age 67, IDC. Stage 1, Grade 3, 1.5 cm.
KI-67 99% at MX . Bilateral mastectomy 4/1/08 Node-, BRCA 1/2-,BARD1+, TX:Cytoxan/Taxotere x4,3 in family with TNBC
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Post Options Post Options   Thanks (0) Thanks(0)   Quote zoomommy2 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 23 2011 at 4:14pm
Kat, my dear,
How I have missed you!  I have tried to PM you several times, but your inbox was full.  I'm glad to hear you are still cancer free!  That's the best news.  Mine isn't so good, but I am back on chemo and fighting the little beast! 
Love you,
Lee
dx6/09,stageII,gr3,(L)mastectomy 7/09,ACx4,Taxolx7,Avastin study,gall bladder surgery 1/10,4/11 Stage 4, mets to lung, 4/11 Started Taxotere and Xeloda, 5/11 Taxotere stopped, off Xeloda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Katastrophe Quote  Post ReplyReply Direct Link To This Post Posted: Apr 25 2011 at 11:14am
Thanks Girls,
Good to be back. Lee I am so sorry your cancer is back.... when did this happen? I was swamped with visitors till almost Christmas, Then I had four weeks to get back on track and prepare for my trip to Burma. We left beginning of February for one month, sadly one and a half weeks into the trip my Mother died. My sister and I had to come back home and settle her affairs and bury her luckily we had organized everything before we left just incase. We had to leave our husbands and sister in law there to complete the trip as we had taken all this charity stuff with us and we had not even begun to distribute it. In the middle of all this I have had an endoscopy and colonoscopy as ive been still having stomach problems (turned out to be diverticulitis and irritable bowel syndrome). Then I had to go and see a surgeon about my arm as its still not working well and its been nearly a year and a half. So I am now going into hospital on the 18th of May to see if they can do something with it. He said that the scar damage caused by the radiation was massive and I also have nerve damage from having my lymph nodes removed. Depending on how the first operation goes, that will decide if I can cope with having the nerve surgery. He said that will be the biggest operation of my life ( 8 hours + in surgery) he said it will make my mastectomy seem like a walk in the park. I am also seeing another specialist about my foot in June. We are going to try orthotics first to see if that will work (I have planter fasciitis and heel spurs), if not possible surgery for that too (although they are not usually keen to do it for that) however I cannot bare up with the pain in my foot for much longer. Drives me nuts, its more frustrating and painful than the arm.
 
As you can see life is still fun and games. However, I would not trade my ills, for your cancer Lee. I cannot even imagine how you can cope with going through all this crap again. Mind you, you have always seem like a very tough cookie to me. I think the strength of the women on here is amazing.  Take care Darl .... Talk to you all soon luv Kat xxxx
Age 49. Stg2 gr3 19mm lump in L/br 1 lymph node in L/br 3/14 lymph nod under left arm full clear bil/mast 6rds Chemo 3wkly 25rds Rad 18rds of Avastin finished treatment on 19th August 10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Apr 25 2011 at 11:18am
Welcome home, Kat...

great to have you here, again.. 

you have my sincere condolences about your Mom..

sorry about your arm...

all the best,

Steve


Edited by steve - Apr 25 2011 at 5:08pm
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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNinTN Quote  Post ReplyReply Direct Link To This Post Posted: Apr 25 2011 at 2:02pm
THANK YOU to everyone on this website. My wife, Susan, was diagnosed with TNBC in July, 2010. You have all been a great comfort and invaluable resource to both of us.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote NanceD Quote  Post ReplyReply Direct Link To This Post Posted: Apr 25 2011 at 2:05pm
Hey Kat,
So good to have you back again!  Missed you.  So sorry to hear about your Mom.  That is a hard loss.  Wouldn't have wanted to put my Mom through knowing I had cancer but missed not having her there to cheer me on.  Also sorry to hear you have had so many health problems.  My plantar fasciitis went away after months. Hurts like heck but it's gone away twice for me.  Just something to consider with a major surgery ahead.

Can anyone give me any advice?  Went for my one year check-up today and had the MRI, mammo, chest xray, US, etc.  They found a nodule on my R breast, not in the same spot as last year's tumor.  I'm going for a biopsy tomorrow.  What struck me was the use of the term "nodule."  Did anyone else ever get told this instead of tumor?  The radiologist said she couldn't tell from the MRI if the nodule was cancerous or benign.  Trying to stay calm and positive.  You all know how the thought of starting all over again makes your knees weak.  If anyone can offer any input, it would be much appreciated.

Thank you all for being here for these ups and downs.  I am so very grateful to have this place to come and know others will understand!

Smiles and enjoy that Easter chocolate!
Nance
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Apr 25 2011 at 3:53pm
Dear Kat,
My plantar fasciitis went away after months. Hurts like heck but it's gone away twice for me. Just something to consider with a major surgery ahead.

I stole a couple of sentences from Nance's post above. I agree with Nance.

Also, the surgery for nerves under your arm. What are your expectations from this surgery??? Just something to consider with a major surgery ahead.

If these surgeries aren't completely successful you will, in all liklihood, be dealing with more pain than you have now.

So sorry to hear about your mother's death. It's 11 years since my mamma died and I still miss her everyday.

Take care of yourself....

God Bless,
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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Apr 25 2011 at 5:03pm
Kat, welcome back!  We missed you.  So sorry to hear about your Mom.  Very sad, though I am glad your checkups have gone well and you remain NED.  Hopefully your arm movement will improve soon with the surgery.

Love,
d

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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Katastrophe Quote  Post ReplyReply Direct Link To This Post Posted: Apr 25 2011 at 8:31pm
Hi Guys,
Thanks for the input. I too have had long term issues previously with Plantar Fasciitis, had it originally in both feet. Its return has been a Ba$Ta&d this time. Refuses to leave me no matter how much rest and shoe thingys I do. I understand what you are saying about my arm and the pain factor. The doc went into great detail about that going to be my biggest issue. However he did tell me it will get much worse either way. I am fed up cutting my beautiful clothes off me as I have found the getting them on and getting them off is NOT the same motion. I am also in constant pain with movement as it is now. He told me the past year + that I have been doing physio was a more or less a waste of time as the scar tissue is so bad all the exercise in the world would never have improved it. They were treating me for Capsulitis (frozen shoulder) but it is only minor in comparrison to the damage caused by the nerves and radiation. He said the doc would have damaged the nerves whilst removing the lymph nodes. Whether this was negligence or trying to give me the best cancer clearance I will never know. Mind you if it was to give me clearer margins he had no choice.
Thanks for the condolences. I honestly believe my Mum is in a better place now. She was so miserable these past 3 and a half years. She hated being in a home. She couldn't walk or use her left arm. Her mind was starting to go. She was in nappies. It was also becoming difficult for us to even bring her home for the day. Although I loved her being here no matter what her condition (I just wanted my Mum) it was selfishness on my part. She was an active vibrant woman who hated to be in one place for 5 mins. So being confined to that capacity was like being tortured on a daily basis. My sisters and I tried to visit and do for her as much as we possibly could, but it was never going to be enough for her. It almost became a blessing when her mind started to go, as she put less pressure on us when we had to leave. She also never realised at times whether we had even been there or not.
So I think she is now finally at peace. Oddly enough so am I.
Take care all luv Kat xxx
Age 49. Stg2 gr3 19mm lump in L/br 1 lymph node in L/br 3/14 lymph nod under left arm full clear bil/mast 6rds Chemo 3wkly 25rds Rad 18rds of Avastin finished treatment on 19th August 10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote NanceD Quote  Post ReplyReply Direct Link To This Post Posted: Apr 25 2011 at 8:36pm
Please forgive me for coming  back on again with the same question.  I am sitting here wondering what this week will bring with the biopsy tomorrow. I know the odds are always in our favor since most lumps are nothing. I haven't heard from anyone and am trying not to be nervous.  So wanted to go for all of my tests and simply sent on my way.

So, can anyone enlighten me?  Is a nodule the same as a lump?  That is the term used by the radiologist today. It's about the same size as my original tumor but in a different spot in the same breast.  I was Stage I when diagnosed last April so thought my chances were pretty minimal for recurrence (at least that's what I hoped).

Looking for some advice since tomorrow is the biopsy.  Thanks friends!
Nance
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Apr 25 2011 at 8:46pm
Hi NanceD,

I don't know the answer to your question.  I looked the word nodule up and found this:

In medicine, a nodule refers to a relatively hard, roughly spherical abnormal structure. 

It sounds to me like it could be a lump.  Like you said, most lumps are nothing and turn out benign.  It's good to biopsy it just to make sure and give you some peace of mind.  Please keep us posted.

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

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