TN and BRCA+: Support and Connect

Meow0369

hi Amonzoka, I'm so sorry to hear of your reoccurrence. It's surreal to say the least what we go through.i am Braca 1 pos. My mother also at 39 then at 69 4 years ago. She had no reoccurrence but the other breast developed a tumor. I wanted to know what stsge you were at diagnosed. And how many treatments will you be having.

Eschindler

Hi,

I started this forum last year to talk about the particular challenges associated with TNBC and BRCA. One of them was the high chance of recurrence. Today, I received preliminary information from a biopsy that shows the cancer is recurring. So far, it's only in one lymph node (that we can see). So, this is good.

But, this is hell. Again. I'm wondering if anyone can talk to me about parp inhibitor side effects and what I can expect. Same with platinum-based chemo.

Thanks in advance.

acesmith

hello. although I'm in a slightly different situation id love to share my story with you.

In may 2017 I lost my cousin to TN. she only made it 11 months after being diagnosed. she was 32. unfortunately it grew far too quickly even after surgeries. with her diagnosis we came to find out that she was BRCA1+. Her father had the gene. upon finding that out my father (his brother) got tested and unfortunately also has the gene. I am one of 3 kids, two girls and one boy. Out of all of us I was the one to inherit the gene.(breast cancer also runs on my moms side however not the same strands and no BRCA on her side) Upon finding this out I decided in the September 2017 that I was going to have a prophylactic bilateral mastectomy. being only 26 and trying to plan my wedding this through my life into a different rhythm. I wanted to make sure that I would be around to have a family and for my family. knowing the risks associated with BRCA1 and the numbers I couldn't take my chances. although it was easily the hardest decision I've had to make, it was also a no brainer. I underwent every screening and blood test to make sure there was nothing currently there. Fast forward, I am currently recovering from surgery that I had on Monday. this group has been a saving grace for me.

my dad is one of four boys. all of his brothers have two girls. we are having a very hard time family wise because my dads other two brothers refuse to get tested for the gene. its very frustrating because we want them to be safe. we want them to make sure they can catch anything if it comes up. do they have to go the same route we took? no thats their choice. but being completely blind to it is just plain ignorant to me. I hope that maybe doing what I did will help them possibly looking into at least doing the testing.

although my heart is broken for losing my cousin, I thank god every day for her because without her I would not have known or learned about any of this. she's most definitely my guardian angel.

I pray for you and your family. I can not imagine how difficult it must be. I know how emotionally traumatic it is just having the gene. I pray for a speedy recovery and for the strength to help you cope.

thank you for letting me share.

Eschindler

Hi Acesmith-

I am so happy you were able to have the surgeries before you developed any cancer. I think it's crucial, though it is also heartbreaking. One of the things that happens in BRCA families is that there are often ill or deceased loved ones in the wake of our decisions with our own body. I think that's different than other experiences, and it makes the decisions we have to make more heartbreaking.

Have you heard of FORCE? It's facingourrisk.org, and it's the community just for people with BRCA or other hereditary cancers. So, you might check them out. They also have support groups around the country where you can meet up and talk with others about the "previvor" struggle.

Thanks for sharing your story with me, and for your prayers!

Meow0369

Eschindler, I'm so sorry for your 2nd go around with our enemy. It's seems that it was caught early in your post. I pray for you! Please stay positive. It can be won again! My mother first dx w TN 1983 to 2013 until it was found in other breast. ( she did not knw shes BRACA 1 she had no bimx)I was on taxoter and carboplatinum. Stanford recommended the combo based on a study in 2015 that they work better for Braca carriers and TN. Hoping they are right.

What stage were you at firstdx? How was your reoccurrence detected? Exam or blood work? I'm nervous w my current Onco different from (Stanford)dr I'm a year out of chemo and sees me every 4 months then wants to switch me to every 6 months already. Since we are TN I think we should be checked more diligently for the 5 years. My mother was stage 2b no nodes and gets checked every 3 months for 5 years. ( We live in different towns.) I may switch Onco drs. Any ideas anyone

cams

Hi all,

Just finished 3 rounds of Xeloda and after the CT scan, once tells me they want 3 more rounds and they would like to take out all of the breast and axillary lymph nodes followed by radiation. I think the extent of surgery will be determined by how much Xeloda can shrink. So far the largest tumor under my arm shrunk by a centimeter.

I'm wondering if any of you had a considerable number of lymph nodes removed and what is the experience with lymphadema? I teach hot yoga and am concerned I won't be able to maintain my current level of movement afterwards. I'm so tired of the constant monitoring and feel like a piece of meat that constantly gets cut away. Oophorectomy is also in my near future and hoping to get that done in the Spring with the node removal. Hope you're all doing well with the holidays

cams

Dear Amazonka,

Merry Christmas and sorry for the belated reply. Thanks for your advice and perspective. I agree that a combined approach is what is needed here and strengthening the immune system is just as important as getting rid of these cancer cells. I've finished three rounds of Xeloda now with mild effects. Darkening of my hands and feet, some pain in my feet at round two but otherwise I've been slathering with my own homemade bag balm. At round three I became introduced to CBD oil after some scepticism but I have to say that it's done wonders for nausea and I don't have that desperate need to eat all the time to stave off the nausea.

Now the onc suggests three more rounds of Xeloda. The main tumor under my arm shrunk by a centi and suggesting another operation to take out the lymph nodes. I'm not excited about that part. Hope you are doing ok in your journey

Eschindler

Hi all,

I had a meeting with my surgical oncologist a week ago, and she confirmed that a) I do have cancer, and b) that it's in a sub pectoral lymph node, and it's tiny, so it's really hard to biopsy. In fact, on the biopsy I did have, they only got enough cells to identify malignancy, not to identify other stuff like receptor status, etc. So, because it's only in one spot, I have to have surgery to get it out. I'm having the surgery on Jan.11th. Then, I'm slated for chemo and radiation after that.

I have to say that I am just in pain about this. I don't even quite know how to describe the pain, like if it's sadness or anger, or what. It just feels like enormous, overwhelming, indescribable pain. So, that's what's happening now.

To answer questions from earlier, this recurrence was diagnosed through a follow-up PET. And, this is interesting for monitoring for recurrence. I was part of a clinical trial (Cynvenio Liquid Biopsy) that collected a blood sample every three months and looked for circulating tumor cells and then matched genetic mutations in those cells to genetic mutations common in cancer recurrences. Last April, my draw showed some mutations, and so I had a PET to check if there was a visible recurrence. There wasn't, but I did have a lung nodule that required a six month follow up. The enlarged lymph node was detected on the six month follow up PET. My med onc is really great about just allowing me to get whatever testing I feel is necessary, which is good, because even on the PET where this recurrence first showed up, the radiologist recommended that we just repeat the PET in 3 months. I didn't feel good about that plan, so I pushed for ultrasound and biopsy, which eventually diagnosed the recurrence. Be aggressive, ladies! Better to look crazy than to to wait and let cancer spread. You know your body.

Thanks for your support. -E

Weston

Eschindler,

So sorry to hear of your reoccurrence. My thoughts are with you. I'm TNBC and BRCA1 positive. I have a 22 year old daughter and a 19 year old son.

Naturally I'm very worried. The geneticist says we should test my daughter at 23. My niece tested positive and had a prophylactic mastectomy in November. So, my brother is positive too. I lost my sister to breast cancer when she was 34 in 1991. Long before BRCA1 testing. I was told at one point that I wasn't a candidate for testing and I didn't have the pedigree. I got it from my dad who had prostrate cancer and his mother died from breast cancer.

I wasn't aware of all the trials available for the genetic carriers. How do you find out about them? I'm going through chemo now but I know when I'm done it won't be over. Life will never be the same.

I wish you the best. You can fight this.

Desirr77

I am not a BRCA1 mutation carrier but a palb2 mutation carrier, diagnosed with TN in 2016.

I am following this thread with interest and I have one question:
Why do BRCA1 mutation carriers have a higher risk of recurrance after treatment? I really do not get that point. So a pcr for a BRCA1 TN bears more risk of recurrance than a pcr for a sporadic TN? As BRCA1 tumours often have features that respond very well to chemo (lymphocytes), I cannot imagine the prognosis can be worse. How can that be? Or has it to do with the outcome of those with residual cancer?

Eschindler, I wish you all the best for the way ahead of you,

Meow0369

Desirr77,

Someone please correct me if I'm wrong but BRACA carriers have higher reoccurrence rate because of the TN that goes w it.

Desirr77

Dear Meow0369,

thank you for the explanation. That is true. I was just wondering - here in Germany studies have been conducted that show higher rates of pcr for BRCA mutation carriers even without Carboplatin. and therefore a better outcome than for sporadic TN.

Eschindler

I'm not sure how helpful this is, but at my recent meeting with my surgical oncologist, she remarked that BRCA1-associated TNBC appears to have different patterns of recurrence, which she used to explain why my TNBC has come back in a lymph node in my chest. She said that this is the common pattern. So, I thought that was interesting.

Also- Weston, thanks for the kind thoughts. The decision to get the genetic testing was a hard one for others in my family, but not for me! I was like, "I'd rather know!" However, I also think I was kind of unprepared for the effects that would ripple out from my genetic status. As soon as I found out, I got married and had my kids. My daughter was 1 when I was diagnosed with cancer, but otherwise I had planned to have the prophylactic surgeries. Tell your kids to check out facingourrisk.org. They're very informative!

Surgery on Thursday. Trying to stay positive. :I

Meow0369

Eschindler, I will have you in my thoughts for your surgery. Hang in there as best you can. We are rooting for you! I'm currently waiting for US for couple of bumps I found. Hoping it's just stitches or Allerderm.

What did you Onco mean ? So a tumor can develop anywhere?

Eschindler

Recurrences can come back anywhere, but for TNBC people the tumors tend to come back in the lungs, liver, and brain. I don't know why this is. My oncologist meant that BRCA folks often have small recurrences in local lymph nodes, which they spread. Hopefully, we've caught mine before it spreads!

My surgery was very successful- they found the node with the cancer in it! So, I am really happy about that. And, did anyone else hear that Olapbarib (Lynparza), a parp inhibitor, was just FDA approved for BRCA-associated cancers? Woohoo!! I will likely have that as part of my treatment.

Thanks for your thoughts and prayers! I think they're working...- E