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Sbb123 
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Joined: Oct 10 2008 Location: United States Status: Offline Points: 11 |
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 Topic: New MemberPosted: Oct 10 2008 at 3:51pm |
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Hello. I too am triple negative. I am 41 yrs old with two young children and an amazing husband. In addtion to triple negative I am also BRCA1
I was diagnosed on July 21, 2008. I had a lumpectomy on August 14. One of my sntinnel nodes tested postive although luckily the rest of the lymp nodes were clean.
I am lucky in that my brother is an oncologist over at Hopkins (although I do not live in MD). He specializes in hematology but he has been coordinating my care over at Sloan-Kettering. His knowledge has also been invaluable. For example, he explained to me that it was likely due to my age I would be triple negative (which I am).
I think my greatest concern is the combination of triple neg and BRCA 1.
I am positive I will get come through this current episode just fine. It is the future I worry about. I have chosen not to have preventative surgery (a double masectomy) on the recommendation of my surgeon although my oncologist clearly believes this would be the better course of action. My surgeon is incredible and I have decided that if/when there is anothe episode then I would opt for the surgery. A part of me is banking on the idea that when I have my next episode research will have provided me with different options.
I am not scared, I know this too will pass. I just need to know that this will not become my life. You hear about women who get it again and again. I worry with my stats I am that woman.
I have a very active career. I am a child psychologist-I run two treatment programs, teach graduate psychology, have a private practice and am working with a colleague on a book that has been picked up by an agent.
Chemo has been tough which actually surprised me because I am pretty tough and resilient. I have continued to work and push through even when not feeling well.
I want my life back!
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NancyJane
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Joined: Aug 25 2008 Location: Key Largo, FL Status: Offline Points: 241 |
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Posted: Oct 10 2008 at 4:51pm |
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Dear Sbb: Welcome to the site! I am so glad you found us. I think you will find a tremendous amount of comfort here. There are many women who will reach out and share their lives and stories with you. You are not alone. I was diagnosed at 41, just turned 42, and am also BRCA + as well as triple negative. It is alot to take in. I just started chemo on Oct. 3 and am adjusting to this new phase in my life. I too worry about BC becoming my life, but I just take it one day at a time and try to focus on what is in front of me right now. Not always easy, but it's a goal. What ever treatment options you choose, I know they will be what is right for you. Each of us selects our own path to health in this journey. You are so fortunate to have your brother to help you with medical "insight" and your own career that certainly gives you perspective on the psychological aspect of coping with stress/disease. The sisterhood at this site will also be a benefit as you go forward. I am an attorney and teacher and find staying busy helps me stay centered. That is not to say I don't have the occasional pity party (tonight one of my cats severly scratched me on my right arm, the arm with no lymph nodes due to my axillary node dissection on 8/12/08 when 38 lymph nodes were removed from under my right arm, thereby shutting down that arms ability to drain lymph fluid affectively. I completely freaked out that I would have elephantitis of the arm. It took a good 20-30 minutes for my husband to calm me down. My arm is just fine by the way
 , I just went temporarily insane!)In any event, welcome. Know that you will gain normalcy, perhaps not what you had before dx. Be kind to yourself right now. You deserve it.
Much love and positive energy to you,
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41yr dx 7/25/08
Lumpectomy and ax node disection (38 nodes, all clean!) 8/12/08 T2 grd 3, N0, TN IDC BRCA1+ ACx4,Tx12 10/08-3/09 prophylactic hyst, ooph,mast & one-step recon 3/30/09 |
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: Oct 10 2008 at 6:05pm |
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Evening SBB,
Welcome to the site. If you look at the bottom of my post, you will see that my daughter Lori was dx TNBC. She is now 46.
May I ask why you have not gone with the reccomendation of your oncologist? I know that this is a very personal decision. However they are no closer to finding a cure or the cause of BC than they were 60 years ago, and very little research for TNBC. You say that considering your stats you worry that you are that woman who will get it again and again. Sounds to me as though you are questioning your decision.
Lori's onc stated that many many of the women who have only had a lumpectomy are right back to him with recurrence. Lori will go for the BRCA testing, and if she has the gene mutation, she will then have her other breast removed, and a hysterectomy and an oophorectomy. She doesn't ever want to go through chemo again. She teaches second grade, and did so all through chemo, just as you have.
Many of the gals here on the site who did not know of their BRCA status prior to surgery, have stated that they would have had a bilateral if they had known. Many have had recurrence and mets. I know that if Lori would had the opportunity to have the BRCA testing prior to surgery, and she was postive, she would have had a bilateral at that time.
Did they use the FISH test on your tumor? That is the gold standard test, although many insurance companies will not pay for it.
Many would consider themselves very lucky to have a brother who is an onc! I know I would!
We are so glad to have you with us and I hope that you will post often to let us know how you are doing. Will you be having rads after chemo?
Hugs,
Nancy
I forgot to tell you that my maternal grandmother died of ovarian cancer at the age of 35, in 1922, because my grandfather would not consent to a hysterectomy. My mother watched the doctor come daily and drain her mothers abdomen, until the day she died. My mother was only 9 years old. There still is no cure for ovarian cancer, or early detection.
Our grandson was dx with leukemia at age 3...he is now 20. There is no cure for leukemia and there have been no new treatments developed for leukemia for decades. Edited by Nancy - Oct 12 2008 at 5:12pm |
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Nancy
DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
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Sbb123
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Joined: Oct 10 2008 Location: United States Status: Offline Points: 11 |
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Posted: Oct 11 2008 at 3:39am |
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Good questions (regarding my decision not to have surgery). My surgeon is a research guy who's trials are well known. My decsion does not change my prognosis. Meaning that while I may have another incident somewhere down the road the stats refelct that my prognosis remains the same. It does mean that I may have to go through another surgery and rads (hopefully not chemo because I will be followed by one of the top high risk clinics in the country). I have decided that if/when another incidence occurs I would then do the double. No decision is yet firm and I plan to talk to my surgeon and a few others before the final decision. As I mentioned I am lucky to have access to some of the top professionals in the field because of my brother's stauts (he too is a researcher although his clinical trials focus on hematology). While the stats refelct that the double is effective-as mentioned they also reflect that regardless-if followed closely the prognosis does not change even if there is another incidence. This fact I have checked and double checked with those in the field and they do agree. It really comes down to what one is willing to go through in the future.
I appreciate the support. I realize most in my position might make other choices. Given my age and my otherwise good health though it is where I am at.
I will have rads (if I decide not to have the double of of course).
I appreciate the opptorunity to join this community of caring, supportive and informed women!! Thank you so much! I will continue to keep all in the loop and am looking forward to supporting and cheering on others. My goodness, so many strong women-it is quite brilliant!!!!!
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CarynRose
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Joined: Aug 04 2007 Location: Robbinsville, NJ, USA Status: Offline Points: 960 |
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Posted: Oct 12 2008 at 3:28pm |
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Sbb123,
I'd be really interested to hear how your docs would explain me. You can see my stats below. My prognosis looked very good at first, and here I am Stage 4 at the ripe old age of 48.
While I can see that having your breasts removed might be too late for you to prevent metastasis because with triple negative and a positive lymph node, it may have already microscopically spread (even with my negative lymph nodes, it spread), I wonder why you are not discussing having your ovaries and tubes removed at your age. There are so many who have had 3N BC, BRCA1+ (especially BRCA1+) who end up with ovarian cancer that kills them.
One indication of your prognosis might be how your family members with cancer have made out. From whom did you inherit your mutation? Did your brother test?
I hope that you have checked out www.facingourrisk.org, a website FORCE -- specific information on the BRCA mutation, its implications on not only BC and OVCa, but also other cancers.
BTW, yes chemo will kick your butt, no matter what good shape you are in. If you felt great, it wouldn't be getting the cancer.....It gets even better when you stop in the middle of a sentence because you can't remember the words you need to communicate or totally space out and forget why you put your keys in the refrigerator, LOL.... Chemobrain is sooo much fun, especially for professionals.
As you go through your journey, if you want support from those who have gone ahead of you, please take us up on our offers.
All the best,
Caryn
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Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
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cchennau
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Joined: Oct 11 2008 Location: United States Status: Offline Points: 4 |
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Posted: Oct 12 2008 at 3:52pm |
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Sbb123,
It sounds like you are well-connected medically and have faith in your team. Having a brother who is an oncologist must give you a certain comfort.
I am only chiming in because my oncologist and uncle (a medical director at Kaiser) both recommended I get genetically tested and both strongly urged me to have a second mastectomy and hysterectomy if the results are positive. (My paternal aunt died of ovarian cancer at age 67.) I am 44.
I will find out Thursday what my genetic status is. If I am positive, I will proceed with the surgeries. I want to take all precautions against recurrence.
Please keep us posted on whatever news comes your way.
Be well, Carla
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Married - Southfield, Mi
dx - June, 2008 Left mastectomy - July, 2008 Chemo: Taxotere and Cytoxan T1, N0, M0 2 daughters (12 and 15) Middle School English Teacher |
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kirby
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Joined: Oct 09 2007 Location: bay area,california Status: Offline Points: 1088 |
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Posted: Oct 12 2008 at 9:30pm |
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Sbb123, and all.
I probably spent the first 5 years after treatment reading & planning what I would do IF my cancer came back. I considered that being a realist and wanting to be prepared, not having doubts over my treatment plan.
Nancy, I am not sure how you can state "we are no closer to finding a cure or a cause than we were 60 years ago and there is very little research for TN's. I was dx well before there was an inkling that there was a subset of TN. In the 8 years since my dx, they have not only named it but have figured out response to chemo's, now do neo tx, are aware of target population it generally fits [even though I fit into absolutely none of these]. I do wish we were much closer to finding a cure & cause. I had genetic counciling and testing 2 years after dx and met extensively with the geneticists before they would even do the blood work. How much has even changed since then ! So many of you are easily getting genetic testing done now. Even having the awareness of genetic components is so much closer than 60 years ago. If they can't figure out how it is mutating, how can they figure out to cure it. While I would like to see more done we have come a long way. Cancer is quite illusive. Even 30 years ago there wasn't the options there are now. All treatment was quite horrific and on top of that women were ashamed and breast cancer wasn't even talked about. Women were silent and went into hiding.
Cancer is scary enough without turning the focus negative. We should be here to encourage and support. We all react differently emotionally and to the treatment.
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kirby
dx Feb. 2001. Age 44 Lumpectomy 2cm. no nodes stage 1 grade 3 4 rnds AC, 35 rads |
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Sbb123
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Joined: Oct 10 2008 Location: United States Status: Offline Points: 11 |
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Posted: Oct 13 2008 at 2:24am |
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Thank you all for your continuing cncerns and info!
Caryn actually I am definatley having the opharectomy. I am doing this because it decreases my chances of future breast cancer episodes and, as you mention, I will then not have to be concenred with the risk of Ovarian Cancer due to my BRCA 1 status.
I am just not ready for the bilatleral masectomy-but will see. I am only in week 3 of 16 wk (8 treatments of chemo).
I am aware of the possibility of "micro cancer." I was however stage 1 with no signs of it in any of my other lymp nodes except the sentinnel.
-I agree we are making strides ahead in the research. Not too long ago the sentinnel node byopsy protocol was non-existent. This ahs made the procedure so much better for thousands-including me!!!!!
Be strong and look toward the future-it is bright!
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CarynRose
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Joined: Aug 04 2007 Location: Robbinsville, NJ, USA Status: Offline Points: 960 |
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Posted: Oct 13 2008 at 4:49am |
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All, Actually, for me, the SNB didn't work (I guess I was one of the 2%??) because no cancer cells were found there, but we know now that they were there. A lymph node dissection probably would have been better as they would have removed the nodes with the cancer, preventing the spread that occured later.The only reason I was Stage 2a and not stage 1 is because my tumor was 2.5 centimeters instead of 2. Everything else about my pathology said I was a 'cure.' But this is a tricky sucker and it found a way.
I'm so happy that they have really started making strides in figuring out triple negative cancer, but there is a very long way to go before anyone can say that they have anything that they know will cure it or prevent it from coming back. It's very weird being at the edge of the skinny branches of science, sometimes, even knowing more than the doctors who are treating us. But, along with the mutation, my BRCA1+ gene gave me a big mouth, and so as long as I have the strength, I'll be sharing the word..... LOL
Sbb123, would you put in a good word to your relatives for LATE STAGE triple negative cancer? So many researchers I've met sort of glaze over, figuring that we're lost causes, and move on to early stagers. I'M NOT DONE YET!! And I need to be made chronic with targeted therapies so that my body doesn't break down under chemo, which appears, at this point, to be the only treatment.
One bit of advice -- even after you complete your treatment, your docs should be HYPER-vigilant with you. If you have a rise in any tumor markers (including CA125 - ovarian), or if you have any discomfort, they should give you a PET/CT scan. My docs did not when I first noticed an ache under my arm. Two years later, it was a 3.3 cm tumor in my axilla that also spread to my lungs. If we'd caught it in the lymph nodes, I'd still be Stage 3 and "cureable." Doing scans on early stagers is not 'standard of treatment', but be insistent!!
Hang in there! (Oh, and it's ok to be scared....)
Caryn
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Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
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sharon in Mich
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Joined: Feb 29 2008 Location: United States Status: Offline Points: 70 |
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Posted: Oct 14 2008 at 10:39am |
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Dear sbb123--I am so glad to hear you are having the opharectomy. I've been lurking on this thread and not saying anything, because you seemed to have such good advice and be level-headed and determined about your treatment. Who am I to butt in??? That said...With the BRAC mutations in women who've had the kids they want, it's the ovarian cancer that is sooo scary,at least as far as I'm concerned. With vigilance at least you have a shot of early detection for recurrence in the breast. But the ovarian cancer is such a stealth killer with no early detection. When I read the studies about the high correlation between TN and BRAC and the ovarian risk, I was in my onc's office the next day demanding the genetic test. This was March and I put all my summer plans on hold, because if I had the mutation, my ovaries were going to be history asap. Happily I was negative on the mutation.
Good luck, Sharon |
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Sbb123
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Posted: Oct 15 2008 at 7:17am |
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Sharon-Thank you for your wise words! I am so glad to ehar you do not have the gene!!! It really does the entire picture. This episode I will get through fine although the chemo kind off stinks!!!!!! Ihave been drinving my docs crazy about the ophaphorectomy as I want it over with sooner rather than laster. I am doing it more for the prevetion of future breast indicents as BRC! appeasr to only reaer its ugly head in the form of breast cancer in my family-bu t who wants to takew that chance! I hope you are doing well and feeling! As I always say-"This too shall Pass"
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Sbb123
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Posted: Oct 15 2008 at 7:24am |
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Caryn, Thanks for your info! Actually after this whole epsidoe is done-I will be sent to the High Risk Clinic due to my current episode and BRCA 1 status. My understadnign tis that the testing is often and intense. It helps being at a research hospital. I will be seen a minimun of 6months for an MRI and I am not quite sure what the rest of the protocol entails.
Bets, SBB!@# |
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CarynRose
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Joined: Aug 04 2007 Location: Robbinsville, NJ, USA Status: Offline Points: 960 |
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Posted: Oct 15 2008 at 9:21am |
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My surveillance schedule was two mammograms a year, one annual breast mri, one annual transvaginal ultrasound (even after the oopherectomy, to watch for primary peritoneal), regular tumor marker tests, and whatever scans that would be appropriate based on any concerns we might have. I know of BRCA women now who have two MRI's a year.
All the best,
Caryn
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Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
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mainsailset
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Joined: Jul 27 2008 Location: Washington State Status: Offline Points: 5004 |
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Posted: Oct 15 2008 at 10:25am |
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Well, here's my story. My sister found a lump 9/04. Mamogram & UltraSound, came up fine. She went home. 3/05 she felt it had grown. Biopsy came back positive. She was not triple neg. Treatments were lumpectomy, chemo, rads followed by a clinical study to inhibit the estrogen. 10 days ago she went in for one of her regular follow up mamograms. Small spot detected, on to UltraSound. Both techs thought it would be fine. Sister insisted on a biopsy. News came back yesterday from onc that it is positive. This is in the same breast and is obviously aggressive, and no I haven't seen the report to see if it's triple negative.
This friggin time she's had it with the lumpectomy stuff, she wants her life back and is even considering demanding a bilateral mascectomy.
For all of us, it's about getting our lives back, tolerating the treatments, all the stuff we do to get well, we're looking for the best results each time.
Say, you know the CA15 tests? I'm curious if it's reasonable to get these added to the routine before, during (as in the end of a chemo regime, after surgery & after rads) so you can get a history? I know there's always a marker or residual left but it just seems like it would enhance the knowledge. Thoughts?
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Oct 15 2008 at 12:43pm |
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Mainsailset,
My gosh I am sorry to read about your sister! What an awful time she is having all so fast. I feel bad for her, hearing it's back is horrible.
Keep us posted on how she is doing, will ya?
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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mainsailset
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Joined: Jul 27 2008 Location: Washington State Status: Offline Points: 5004 |
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Posted: Oct 15 2008 at 2:11pm |
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Thanks Pam, I just got off the phone w/nurse because I have 2nd lump which had been cleared by Mamogram & Ultrasound and subsequently no biopsy. Guess the lesson learned here is it ain't cleared until the biopsy lady sings!
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sueez
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Posted: Oct 15 2008 at 3:09pm |
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thanks everyone of you for being my angels pam sooooooooooo happy your ok was really worried also dont know what or when my treatment might start every day something new today they said my pap was mildly irregular so have to go for i guess a coning what else was freaking last night but i dont think much more could be said carynrose i read your letter and i wish i could tell you what an inspiration you are to me hope all is well please know that i now feel you are all my family love unconditionly sight unseen
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SnoozBar
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Joined: Aug 27 2008 Location: United States Status: Offline Points: 65 |
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Posted: Oct 15 2008 at 6:08pm |
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SBB123,
Hello there. WElcome and please let us know if any of us can be of any help or support. It can be difficult to decide what one must do when there seems to be conflicting studies, or advice from an array of medical professionals. They main thing is you must decide what you can live with. When I found my lump, they did the mammogram and an ultrasound, they then found another spot in the same breast and a small spot in my other breast. With 3 places, I figured my breasts weren't playing nice with me, so I elected to do the double mastectomy about 3 months ago. I knew that the dbl mast was what would make me feel comfortable after everything was said and done. It sounds like you have great support and know that you are not alone. Sometimes it is nice to talk to those that are going through it or have gone through it. Nobody knows unless they have walked in the shoes of someone with Cancer. Good luck and God Bless Mary |
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Sbb123
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Posted: Oct 16 2008 at 2:13am |
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Mary-Thank you! There are tough decisions to make I and respect your understanding! So many people are confused by my decision not to go forward with thebilateral at this point. I should mention that I found no lump. I am literally owe my life to the radiologist who pick up a 1.mm "shadow" on a routine mamogramm! Regardless oft he size witht he BRCA 1 status it is what it is. If I have another episdoe I will have a bilateral. I am just hoping to get soem years between me before that happens (if it happens). I have a crazy busy life and am at the peak of my career right now plus two young children and an amazing husband. In the end, all decisions made will be based on ensuring that I am around to be with those I love.
Thanks again for your support!
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suzannek
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Joined: Oct 16 2008 Location: United States Status: Offline Points: 67 |
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Posted: Oct 16 2008 at 5:39am |
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Hi Caryn I just joined this forum having recently found out about my new life as a TNBC patient. (mammogram: 9-10-08, Stage 2a, 3cm, node negative) I had the tumor removed but had bad margins. I am currently waiting for my second surgery. They are waiting for me to recover from the first.
Did you have chemo with your first occurance. If so, what regime?
Of course I am frightened about this whole thing. Cancer is so unfair. I am glad the sentinel node thing was negative but as you found out, that isn't much of a reassurance and bits of the cancer are still in me. I am hoping that they have gotten better with the sentinel mapping than they did in years past.
I am glad that you have found the inner strength to keep the good fight.
sue
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