Triple Negative BC & Older Women
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Hello ewormwood,
I just saw your post. I haven't had recon. I did have 2 local recurrances
in the same spot. (TNBC). The first time, 2005, I was 56. I had a lump and
refused all other treatment. The second time, 2008, same spot, again, lump
and no further treatment. This year, I had my 2nd local recurrance in the same
spot and with lymph node involvement, both sides. So far, I have done taxol,
12 weekly, FEC 4 rounds, bilateral mast, and bilateral lymph node dissections. I
am getting ready for radiation. Have you gotten any info so far about doing the
rads with an implant in place? I don't plan to do recon, just in case I get yet another
recurrance. I have read a lot about TNBC and don't see much that is relevant to older
women. Up to now, I was going with the idea that since it hadn't spread anywhere, I
would wait on doing any treatments other than surgery. Now, I am doing treatments and
am more worried than before. Hope you have found some answers to your questions.
Margaret
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Hello to my fellow "older" triple negative sisters. I am 62, have had a lumpectomy followed by a revision for clear margins, have had 2 TC with 2 to follow, and then will have 6 1/2 weeks of radiation. I have spent a lot of time on these boards since my diagnosis, and feel as if I know no more about the prognosis for an "older" women with triple negative than I did in the beginning. While It is heartbreaking to read about the younger women with young children who are traveling this frightening journey, it has also been devastating to be going down this road at 62. I have always been very healthy and active, and had fully expected to live another 20-30 active years. Now I wonder if my little Grandchildren will ever even remember who I am...
Thanks for letting me engage in a self pity party....I am just feeling sad as I watch my husband put up the Christmas decorations while I am too exhausted after chemo to even get out of my recliner chair...
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I'll chime in as real newbie-- recently diagnosed TN 56-year-old the last of July. I had a CT brain scan and a neck to knee PET scan just today- to come up with a complete diagnoses and staging.. Now I have the weekend wait... having fun yet??? **sigh**
You bet it bothers me that "older women" seem to be the stepchild of the studies since the numbers of us appear to be smaller.. While my heart TRULY bleeds for these younger women, and right now I worry about my own grown daughter, it would be nice to have more studies for those of us who DO develop this later in life. I feel sick for such young women to be hit with TN, so don't get me wrong. This is uncharted waters for so many of us as it is. Surely older women should be considered since we DO indeed develop TN. Hello!? Here I am, and so are you posting in this thread.
My mother had early onset BC yet I have no idea of what kind. She had a radical mastectomy on her right breast after finding a very palpable lump.. Mine was easily found also.. like it popped up overnight. I digress. There's no other family history on Mom's side of the family, nor my Dad's who are all now deceased. Even my baby brother died of the chronic form of leukemia Mom had. I'm very familiar with cancer as it's hit my birth family with a vengeance. My Dad died of pancreatic cancer also 3 weeks after diagnoses.
In Mom's case she survived the breast cancer treated (at around 38 years old, I think).. About 30 years later died from complications of chemo to treat what I think was a late diagnoses for acute myloid leukemia. She lived 3 weeks from diagnoses.
All I know right now about my own diagnoses is a poorly differentiated invasive ductal carcinoma from 4 tissue samples acquired from a needle biopsy. I also had an MRI which only confirmed this diagnoses with no other findings.. And of course it's TN.
Discovering that own my own thru my path report was a huge kick in the gut. I was ready to fight breast cancer.. I'd never heard of this form though. And yes, It WAS confirmed by my new oncologist.
Everything has happened so fast.. but not fast enough after reading about the invasive nature and distant reoccurring rate of TN.
I plan to get tested for BRCA mutations as I have a 37 year old daughter and 3 beautiful granddaughters, one who is approaching her teens.
Even my oncologist was surprised I was over 50. It could be taken as a compliment, however in reality I think it had more to do with the fact that most of her patients are much younger. She does the most breast cancer cases in the state. What she can't handle, such as cases where her TN patients have mets she sends to Baylor. She feels the true experts for this particular cancer is best treated at Baylor, as the so-called-mother of TNBC doctor is there with her research team.
Filtering all this information in such short time has been a real kick in the behind, but I'm hoping and praying for clean scans and and a low stage to start.. as I'm ready to do what I can to beat the crap out of this nasty beast.
Sorry this turned into a novel.. my first post.
I'm so glad I found you! Peace of mind seems a thing of the past.. though I desperately wish it for all of us, at ANY age! Take care...
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Hello Adgirl and thank you for sharing your story. I'm reallly sorry you are going thru this and experiencing one of "those" week-ends can put one on pins and needles!
That is good you will be tested for a brca mutation especially with your family history.
Just in the last few years has info began to filter thru re tnbc, slow but it's coming. It is horrible that this disease does tend to affect younger women but I feel we need to address those of us over 40, 50, etc., also as we too are devastated by this diagnosis. Info for us older women is slim to none.
Have you been to the http://www.tnbcfoundation.org website yet? Their forum is specifically for tnbc women and there is great info/support to be found.
Keep us posted on how you are doing, what treatment plan they have in mind, hoping all goes smoothly as possible.
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I was diagnosed on 10/3 with TN. I'm 59 yrs old. I'm still trying to learn about TNBC. Until reading this thread, I didn't realize that most of the numbers relate to younger women. You bet that bothers me!
I meet with a genetic counselor on 1/2/12. My onc confirmed that a TN tumor with a family history of some cancers can indicate the BRCA-1 mutation. I will have to wait for testing to confirm that but really,....TN tumor at my age with that possible mutation...am I looking at DMX plus prophylactic hysterectomy? I've been completely healthy my whole life. Are there more body parts that may need to come out/off? This is where more figures on women my age would make me happier.
Crap! Crap! Crap! I know I'm not the first to say that. Thank you for listening.
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I'm back to report.. (better late than never, right?)
The Pet and CT scans I was waiting on when last I posted (which now seems like many moons ago) was thankfully clear of any distal mets.
After much deliberation and not being able to find an oncology breast surgeon nearby, I decided to receive treatment at MD Anderson in Houston- even though it's quite a distance. During neoadjuvant chemo I had 3 at home and the 4th at MDA. My mass grew on Taxol, so that was aborted after 3 rounds (weeks) and moved on to FEC, which turned out to be very effective.
I chose to go with a skin-sparing bilateral mastectomy due to my BRCA1 positive status after all. That was a huge surprise. Sadly my 36 year old daughter is BRCA positive as well. I have 3 granddaughters who are too young to be tested. They're a blessing.. I wish they didn't have to face this possibility. Hopefully by then advancements will be underway.
My TN IDC was staged at IIa N0 by the time I received treatment. It started at stage I. Aggressive little bugger. It was located close to the skin surface and extremely palpable. After BMX I was surprised that pathology proved a pCR as I could still feel something that was like a small soft grain of rice. I was told this was dead tissue. I was also told margins were insignificant if one achieves a pathological complete response.
I talked with my reconstructive surgeon and let her know to NOT place tissue expanders if it compromised clear margins or outcome in any way. I woke up from surgery with TE in place (plus a very small fill) and had a very quick recuperation. I was back home (7 hours away driving) in less than 24 hours from surgery - Even with lymph removal I had full movement and use of my arms. I never had much pain and was on my feet in no time. I feel blessed all went so smoothly.
I recently met with an MDA radiology oncologist who said the risk/benefits we're simply not beneficial for radiation in my case as a stage II with no lymph node involvement. I'm wondering about a 2nd opinion. Since mine was an aggressive chemo treatment.. 6 rounds of FEC when the Taxol failed, in a way I'm opposed to radiation at this time, too. I'm sensitive to the other problems that can occur down the road.. different cancers, pulmonary and heart problems. She did say that they've never had a TN come back to the facility with local or distant mets with my pathology results.
Regardless, I plan to be vigilant in checking for local recurrences. My MDA onc. still wants to see me every three months for at least 3 years. Right now I have a small place that doesn't look right on my skin-sparing scar.. but the other side has the same.. so I'm hoping it's part of the scar itself and not a recurrence. After reading another thread here, I'm aware of so many who had a BMX for much smaller tumors than mine, including DCIS who found themselves with very early local recurrences- I'm taking just a few months after treatment. And some nearing the end of treatment. It's due to the fact they can't remove all tissue even with BMX. The numbers of women posting VERY early loco-regional recurrences after MX is a real eye opener.. since their chances were about 1%. When that 1% is you it may as well be 100%. I know as I had a very rare component to my tumor.. chondroid metaplasia which also represents only 1% of the breast cancer population. (I found many other women with metaplastic differential in their masses. Makes you wonder if stats are grossly underestimated) The radiologist felt this didn't play into the equation. She thought there were only tiny areas of this very rare finding and the mass was mainly IDC. Metaplasia is very chemo resistant, yet the FEC regime seemed to do its job very well.
I'm still in the process of finishing breast reconstruction, then a prophylactic TVH w/BSO as a BRCA+.
Wishing all of us older gals much success kicking the stuffings out of TN.
I've noticed more Triple Negative studies including women up to age 75, thankfully!
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I am 67 and found out for the first time that I had triple N in February.
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I was diagnosed in Jan, 2012 w/ TN at age 53, I'm 54 now. Had a 4 cm palpable tumor. 0/15 nodes negative. Lumpectomy, 4 DD AC, 4 DD Taxol. Just finished last Taxol dose today. Initial plans call for starting rads next month, have first rad onc appointment in 2 weeks. But, I am now seriously considering a bilateral mastectomy. Have dense breasts, and am worried a new 2nd tumor might not get caught early enough. Also, assuming it's another TN tumor, the thought of more chemo isn't pleasant, especially as I get older and may have other health issues. The breast surgeon said risk of a new tumor is about 15%. I think that is just general risk, not specific to me. Does anyone have any statistics on this? Is it any higher for TN patients? I have not had genetic testing. Did have 2 aunts w/ BC but they were older/post menopausal when they were diagnosed. Just don't know if want the testing and have more black clouds hanging over my head. I don't have children or siblings to worry about. I noticed several of you ladies have had BMX. Can I ask what caused your decision to do this? Did your doctor advise it? My doctors say it's not necessary but it's up to me. I'm really struggling with this decision. Easiest route is to do the rads but if I can reduce my chances of a 2nd tumor in either breast, it may be worth the pain of a BMX. I'm so grateful for this forum. Wish none of us had to use it.
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I was DX in May, 2012, Invasive lobular BC. Surgery June 6, 2012, mastectomy. Path report was TN, I thought negative meant "good". Little did I know. So I've had one chemo session (cyclophosphamide, docetaxel) with a Neulasta injection the next day. About 2 weeks after, I got almost back to my usual energy level and could do aerobics class 3 days a week again. Not quite my usual self - before BC I'd do 2 or 3 miles on the treadmill before class. Get the next chemo Tuesday next week. Hopeful things won't go downhill too fast. I guess the more chemo sessions you have, the worse you feel after. Anyone want to send me some encouragement?
As fas as age goes, I'm 75.
Well, it's Tuesday, I just came home from my 2nd chemo infusion; checked for words of encouragement. There were none.
Guess I need to try a different forum. Oh, well.
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I am devistated by the news but everyone here gives me encouragement. I just don't know if i am doing everything. I have a 1 cm on right and doc (at accrediated breast center)wants lump then chemo rads i guess. Should I just have them taken off? I don't know if I should be getting second opinion at national cancert institute hospital for the procedure for chemo and what chemo to take. Do all places know the correct chemo to take. I have read some of your stories that for some chemo was easy and others hard. Is that because of all the different chemos and there are better than some or what.
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Everyone has to make their own decision on surgery, etc. My advice is to listen to your surgeon and your gut. If you aren't sure if you trust your docs, get that second or third opinion until you find someone you trust.
Chemo regimens vary depending on the cancer itself, your own health going in, and other things. There isn't one cookbook "correct" chemo to take--there are guidelines, and the pages on this site that talk about the different regimens are really helpful.
Chemo is different for everyone partly because the mix is different, depending on where you are and other medical conditions you might have. Also, people react differently--the same chemo drug might give one woman the heaves, another one doesn't feel anything, and another person might be in the hospital.... I think it tends to follow the pattern a person has in reacting to other meds and life in general--I rarely get sick to my stomach with colds or flu, and I had very little nausea or digestive problems with chemo. On the other hand, I always have trouble with my mouth--braces, cavities, bad teeth--and had terrible trouble with oral thrush during chemo.
Hope this helps! And stay in touch on this site--I don't know how i would have gotten through treatment without it!
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I was 44 when I was first diagnosed with TriNeg BC. And then 48 when diagnosed with local recurrence TriNeg BC. First time I did everything they told me would take care of my early stage BC.....lumpectomy, chemo and rads. Second time only did BMX with reconstruction. Waiting on the other shoe to drop with this crap!
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Beachmd: hope you are getting ready for your decisions. I am 5 months from double mastectomy. The option given at the time was lumpectomy with local radiation "maybe"... or radiation for the whole side. We did a total breast MRI both, which told us we knew EXACTLY where it was. I'm not sure I realized the significance of the triple negative at the time. "If I had a do-over, I would" ask for chemotherapy first to "see" it working. I am not second guessing the double mastectomy ... I had very small breasts. A lumpectomy would have deformed what little I had. Post-menopausal, my "sensitivity" was gone anyway. The chemotherapy is standard for TN I assume. I finished the fourth and final round last week. My sentinel node was negative during surgery but was 0.8 mm micrometastatic in pathology. The "tumor board" said no more nodes to cut out and no radiation needed. I went for 2nd opinion on chemotherapy.. it would have been the same. I preferred oncologist #1. Let me know if you have other questions.. private message if you want...
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Both of my sisters in their 60's were diagnosed with 2 different types of breast cancer. I was just diagnosed the very day I turned 62. I don't know what type I have and have not started treatments. I am scheduled to see the surgeon tomorrow for the first time and the oncologist on Friday. One of my sisters had TN and died. The other had In Situ and lived. I know that I have a lump and some in situ calcifications and the lump is near my armpit that is invasive. The radiologist says it was not in the lymph nodes yet. I will know more after tomorrow I suppose, but I am alone and not happy.
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hi Sher,
my mom just had very similar recurrence I am wondering what type of treatment they did for a recurrence
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Kaitha, this is an old thread from 2012, so you may not get a reply here. Try "Calling all TNs" that's an active one.
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Thank you, Santabarbara
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metaplastic breast cancer information for newbies
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Hi Lcjks, you may want to take a look at this forum:
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Oh, yes. 75 years old and newly diagnosed with TNBC. I had needle biopsies in late December, two tumors and 3 lymph nodes removed in early January. Sentinel lymph node was swollen and definitely involved - many cells. Second lymph node slightly involved. Third lymph node clear.
My oncologist wants me to try aggressive chemotherapy and I start on March 17. I am single and live by myself and have always considered myself a strong individual, but I am not feeling so sure about that now. I hate the feeling of being out of control! I live in a semi-rural community in Southern California, about 30 miles from significant population and have been looking for support groups. I guess that Covid has pretty much done in the in- person groups so I'm absolutely counting on a couple of forums to help me get through. I'm really feeling the need for some support right at this moment.
Thanks for listening (reading).
Sue
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