TN and BRCA+: Support and Connect

Eschindler

Hi,

I was wondering if there is already a thread where folks talk about the specific challenges associated with being triple negative and BRCA+. For instance, here are some that I've been confronting lately:

1) I am on my fourth surgery in a year. I had a lat flap construction two weeks ago, and although it has gone great, and I am thrilled with the results, the ongoing cycle of recovering from surgeries is leaving me low. It is very hard to stay out of the "I had TN, it's going to recur, and my daughter's going to get it too after I die from this horrible disease." I am managing to reach out to my family and therapist, and I have a support group, but I find that there is a different narrative with non-heriditary, non-TN cancers. Most of the people in my support group see their cancer as one event, as opposed to a series of events, or even a chronic part of your life, which is how I've experienced it.

2) My kids. I am having the hardest time guiding them through this last surgery. They are just so tired of it, and for my three year old, she's just now being able to articulate her fears. How do you calm your kids when you're so scared too, and when you can't truthfully say for certain that they will never have to deal with all of this?

3) How do we manage fears of recurrence, knowing the reality of TN and BRCA?

4) How can we make sure we get into time-sensitive clinical trials, particularly those that are testing vaccines to prevent recurrence in TN survivors? I missed a good one because I didn't know about it until after the eligible window (14 weeks post-chemo) had passed.

5) How do we advocate for treatment specific to our situation, knowing that not all oncologists understand the aggressive nature of BRCA associated triple negative cancers?

6) How do we talk about the experience for those who undergo treatment for cancer AND preventative surgeries related to their BRCA status?

I have been looking at other communities, such as FORCE and the Triple Negative Breast Cancer Foundation, as well as the Basser Center at Penn, and they are all very useful, but none of them (as far as I can tell) have places for people who are BRCA+ and who have HAD CANCER ALREADY to discuss these issues. I hope this will be a good place to connect and discuss. Thank you in advance for your participation and support!

Moderators

Hi Eschindler. We wanted to send you a warm welcome to the BC.org community. We're truly glad you've found us, although we hate the reason that has brought you here...

Until you get responses from other members here, you may want to take a look also to this Topic: BRCA if you're triple negative did you test positive on BRCA, where you'll sure find similar stories to yours.

Also, interesting articles in our main site about:

• Talking to Young Children
• What to Do if Your Genetic Test Results Are Positive

Hope this helps!

Let us know how you're doing.

The Mods

mom2allboys

Saying hi!! TN and BRCA1+ here.

Kayrem

Hi Eschindler - I know what you mean. It is a different experience to have the gene. It means we pretty much know why we got it, we are playing with 1/2 deck of faulty cards! This is going to sound funny/odd but when I was first diagnosed I was really angry at my body and my breasts! How could it let that cancer grow in me. We were at war I just wanted them off. They would only do a lumpectomy on me because we did not know about the gene. It was wierd because after I found out about the gene (over a year and a half later) I knew I was going to have a double mastectomy, but I wasn't angry just worried. It was as if I realized that I was not at war they (my breasts) just could not tell the difference. The gene was a part of them. The cancer just snuck in

I have a 10 year old daughter and a 12 year old son. When I was diagnosed they were 5 and 7. My dad had just passed 10 months prior from lung cancer (I got the gene from him) and my kids probably thought I was going to die too. But I did not. My daughter 2 years ago told me she was afraid that she was going to get breast cancer because I had it. I told her that everyone is different and that was not necessarily the case. It wasn't the case in my family. My dad had the gene and I was the only one of four children (and the youngest) to get it. If I had not been born then the gene would have ended in my family. It could end with me in my family. Neither of my children could have the gene. That's what I focus on. I can't guarantee them a life with out illness. No one can. But I can show them how to spend the time that they are here well and with purpose. Because all we have for sure is today, but at least we are more aware of this than most people who do not have our particular issue.

Eschindler

Hi Kayrem and Mom2AllBoys!

Thank you so much for responding. I am happy to hear that there are other people out there thinking about this stuff, though I'm not happy to hear that you have to experience all of this. There is a certain "unendingness" to our particular situation, I think. I'm not that far out of treatment (though further, it seems, than you are Mom2AllBoys...hugs to you), and my children still reference my cancer experiences every time they have to see a doctor or go to the hospital. My son got hit in the head with a swing the other day (he's five), and he had his first trip to the ER for stitches, which ended up being glue. Anyhow, when we got home, he said, "What if I get cancer?". I handled it ok, but it just makes me so sad that my five year old has to feel so scared about his whole life when he's going through something so common for five year old boys, like a bump on the head. Anyhow, thanks for responding, and I would love to hear more.

Kayrem

Hi Eschindler - yeah I think about this stuff and your right I wonder when the next shoe will drop. But there is the other side of the coin. When I found out about the gene I was immediately scheduled for a prophy mastectomy. I think it took 6 weeks of waiting, which in Canada is really fast. Then basically 6 weeks later I got my prophy hysterectomy. My Icelandic friend who had stage 2 triple negative breast cancer, diagnosed 2 months after me, tested negative for the gene got offered nothing. It was her second cancer in 6 years (first was cervical). So maybe she has a gene that they just do not know about yet. I recently had a cat scan on my head and neck because of some ear issues. They do not argue with me when I tell them about a problem. They called me 2 days after the scan to book an appointment and were quick to say " no cancer". They take me waymore seriously now.

I am the first person in my family to find out about this gene and this gene has contributed to a lot of deaths in my family, my dad, my uncle, 2 out of 3 of their cousins, my grandma and 5 out of 7 of her siblings. But now I know about it and if my kids need to be prepared then I can help them. Hopefully they will not have it but if one (or both) does then I have to show them that you deal with the crap and then carry on. Because they only have one childhood and my childhood was pretty good, I really want the same for them.

Kayrem

Hi - Just found this article

http://www.ascopost.com/issues/june-25-2013/vitami...

This is pretty significant for us! Getting your Vitamin D level checked is very important. Take care

Eschindler

I agree! The whole reason I got tested was so I could get increased surveillance. I usually have a pretty easy time getting care these days, and actually my routine breast MRI is what caught my cancer, and hopefully saved my life because it was detected so early! So, yes, there are lots of blessings about  knowing my BRCA status. 

Tomorrow I'm flying to Los Angeles to participate in a clinical trial that looks for circulating tumor cells in the blood in order to detect a recurrence earlier. I hope it ends up mattering for me or for other people! Maybe even my kids! Imagine if this led to better surveillance. That would be amazing. 

Thanks for the Vitamin D info!  

Kayrem

Wow Eschindler that is awesome! That is so great that you are part of this trial. It may matter to your kids, my kids and possibly even me!

I tried desperately to get into a vaccine trial at the Mayo clinic in Rochester but no cigar. It was a vaccine against triple negative breast cancer. I would travel really far to be in that!

Take care and please let me know how it went!

Kayrem

Hi Eschindler - how did your trip go? Do they tell you anything? I am so interested in what you are doing!

mom2allboys

My TN cancer was found only during an MRI. It was not detected on my mammo. Eschindler - after reading your post I wondered if that's often the case with TN?

Eschindler

Hi! Sorry for the delayed response. So far, so good. I'm waiting on results, but I just had a clean CT scan. I'm hoping that's good news. How are you?

Eschindler

I'm not sure. Do you get routine MRIs now?

Meow0369

Hi I'm new to this forum and actually tried to find something about BRACA positive women on this site just glad I found this board. I'm Braca positive and so is my mom and 4 of her sisters. Which is 5 out of 8 girls in her family. 3 have passed. One had breast cancer then died few years later from brain cancer and the other 2 died from complications of ovarian cancer. They too had breast cancer. One aunt still living found out last year she has the mutation no cancer so far. So my family has been an emotional mess to see who is next. Well , that turned out to be me at 42 years old. My momhad it at age 39 then three years ago at 69.

I found out last year just in time to put me in 6 month monitoring when my tumor was spotted on B MRI. But it didn't catch the other 2mm and DCIS or the DCIS in my other breast until I had bimaxtecomies. I had to keep urging my Dr to test me when my mom got cancer in her other breast 3 years ago. I have 2 daughters that I hope are safe from this. I'm waiting to have my ovaries removed and just finished chemo a few weeks ago.

Eschindler

Hi Meow0369-

Wow. That's a lot of heartache in your family. I am so sorry to hear about all of it. How old are your daughters? Do you have any other children?

As I said before in this thread, in some ways the BRCA1 gene saves your life by getting you the monitoring that you need in order to detect the cancer, but that's kind of small potatoes compared to everything it takes away.

I see that you were treated with carboplatin. I had the same dx almost, but I was treated with taxotere and docetaxel. I've wondered since if I should have had carboplatin instead. What were the side effects like with that drug? Were they difficult to handle?

I go in for my (hopefully) last surgery on Wednesday. It will have been five surgeries over 1.5 years if this is the last one! I am having exchange surgery with fat grafting. I'm sad to be laid up for Christmas, but I am so ready to start getting my body back.

I wish you peace and light!!

Meow0369

Hi Eschindler, my girls are 13 and 10 my son is 7. They will be tested as they get older. It's awful because I was the same age as them when I saw my mother go through it I always felt a dark cloud over me that I'd get it too. Call it intuition I guess. The good thing is my mom had no recurrence for 30 years and it resulted in her other breast. No dr ever recommended removing the other breast to her. Maybe her second time around could of been avoided.

Stanford recommend taxotere and carboplatin because of a study last year 2015. The study was for BRACA carriers with triple negative. I had muscle pain all over and couldn't function but I have meet ladies here that did ok on same regimen.

You will be in my thoughts and prayers Wednesday! You have been through a lot already fingers crossed this is your last! I have 2 more. Just waiting on call for ovaries to be removed. Also looking into if fat grating can be done instead of implants. Have you heard of this is possible? Hugs:)

Beck39

hi all, I'm new here and normally just read through forums and don't post, but the stories here sound sosimilar to mine. I'm 39 have 3 children 13,11 and 8. I was diagnosed in June with tn and the found out I was brca1+ . I had a double mastectomy, 4 rounds ac and 12 taxol which I just finished. I'm now scheduling to have my ovaries removed sometime in the spring. I was wondering if anyone had this and if they had a full hysterectomy orjust ovaries and tubes?

Meow0369

Hi Beck39, we have a lot in commom:) I'm wanting to know same thing. Actually waiting for Dr office to call to start that surgery. Are your Drs recommending a OBGYN ONC or reg OBGYN?

Eschindler

Hi Beck and Meow,

I had a hysterectomy last year. I used a GYN Onc, which I would also recommend. If they do the surgery and happen to find anything suspicious, they are able to just go about removing whatever badness they find, whereas a regular gyn will have to sew you up and send you to a gyn onc. I am happy to answer questions. Ask your docs about hormone replacement- there is a lot of conflicting info about whether it's safe after breast cancer, although the info is different for TNBC survivors.

Meow0369

Eschindler, Thankyou for your response. My MO at Stanford and local MO strongly advise an OBGYN ONCO but I'm currently stuck i had to change ins and dr office said ins doesn't allow me to see that particular Dr. I have to see why ,it's preventative, right? Why can't I go to that specialists ?? Annoying. There's a protocol they follow to ensure there's nothing. How was the recovery? What kind of HT did they put you on? For how long? My MO did say it'd be fine since I'm TN. Another MO didn't like the idea since having a form cancer already. Chemo put me into awful night sweats hate to think what having no ovaries will do.

mom2allboys

Beck39, our kids are almost the same age (mine are 14, 12, and 9) and I was also diagnosed in June. I learned a few weeks after my diagnosis that I am BRCA1+.

My oncologist recommended removing ovaries and tubes (but not uterus), which I did at the same time as my BMX. I found the BSO to be super easy, I barely noticed the surgery or surgical menopause as I was focused on recovering from the BMX. My onco recommended HRT, which I started about a month after my BMX. I've been doing great and just had my exchange surgery last week.

No chemo for me as my cancer was DCIS with only a 1mm microinvasion.

Meow0369

mom2allboys, glad your doing so well! What HRT did they put you on? For how long? I haven't done my exchange yet trying to get ovaries taken care of. But so wanting to be on the road your on. (I'm Braca 1 too one of 6 2nd generation)

Eschindler

Hi! I just wanted to update/ respond to some questions I had missed earlier.

I had my exchange surgery with fat grafting on 12/21, and so far, I am infection-free. If I make it to fully-healed with no infection, this will be the first surgery where I didn't have one! So far, so good. As far as the fat grafting is concerned, it's weird and painful, but now that I am nearly four weeks out, I'm glad I had it. I look at it as payback for all the weight I gained due to steroids, chemo, surgery, and just being laid up. My small kids approve. They put their heads on my chest when we read books at night. It's heaven.

Also, I take Premarin, which is estrogen. I take kind of a lot, (.975), but I am stepping down to .675 gradually. I am generally doing ok, but I still really struggle with fatigue. I sometimes sleep like 13 hours in a row, which thankfully my husband lets me, because I don't know any other working mom who sleeps that much ever!

The recovery from the hysterectomy was no problem- it's menopause that sucks. I noticed a change in my mood, my skin got REALLY dry, and just in general, I had to work a little harder to feel more healed. But again, I've had like one million things go wrong (not complaining...lots has gone right too), so it's possible that menopause hit me a little harder than it might hit others. I still have hot flashes at night, especially if I am really tired but can't sleep, which is another thing that happened to me during menopause. I take melatonin to help with that. Overall, it's been manageable, but I am 20 pos out from diagnosis, and I am just now finished with surgery. So, my hope is that in six months, I'll have better things to say about menopause.

mom2allboys

Meow - the HRT I am on is called estradiol/norethindrone. It's a very low dose (I think the lowest??). I believe it's only if you still have your uterus. I was the first one in my family to learn I have BRCA1, but I now know it came from my dad and there is only one other person in my generation who has it (we have a small family).

Eschindler - glad the fat grafting was worth it!

Meow0369

Thank you ladies for the info. I asked my Mo about help for night sweats/menopause and said my gyno onco or reg Dr would over see that. Really? Talk about over looked. So now I have to wait to see them. He also said my WBC was low I was surprise since it's been 3 months that I finished chemo. Has anyone experience that??He wasnt concerned at all but whenI looked it up its alittle scary. I'm not able to fight an infection and he never went over that with me. Never told me to be careful w cuts ,sick , etc.

cams

Hi all,

Sorry if you see this in another post. I wasn't sure which one was still active for this group. I was diagnosed last year in 2016 with TNBC and mutations of unknown significance for BOTH BRCA 1and 2. The onc specialists can't make up their minds whether oopherectomy would be beneficial but considering present circumstances I may do it. Apparently one should do it before 51yr when ovarian cancers are typically diagnosed.

I am Asian with no known family hx of BC. My mother is neg for genetic panel while I don't know about my father. Am convinced this may be lifestyle/exposure related although exercised and ate a pescatarian diet. Considering a vegan diet.

Finished chemo in December and found a pea-sized lump in my armpit in June. Needle biopsy confirmed malignant cells. Will find out options today. Angry and discouraged because I thought I'd have some breathing room and was told chemo effectively kills aggressive cancer cells like mine

sylviaexmouthuk

Hello Cams

I read your post with interest. I noticed that you did not have radiotherapy to finish off your treatment. Radiotherapy is very often used to finish off treatment and I was told it is to mop up any stray cells. Is there any reason why you did not have this?

You can get through this. I am over twelve years out since diagnosis.

You are welcome to join the thread I started nearly seven years ago, Calling all triple negative breast cancer patients in the UK. We have women from all over the world.

You will also find a lot of support on the thread Calling all TNs.

Keep being positive.

Best wishes.

Sylvia xxxx

cams

Hi Sylvia,

Thanks for reaching out. I didn't receive radiation because there was only micrometastesis in one node and the protocol doesn't follow up with radiation afterwards in Denmark. While I was glad not to have had it, almost wish I did.

My next step is the doctors want to take out the single node via local anesthetic and then have a PET scan. Hopefully they will do the PET first. There was also an abnormal node under my clavicle which I learned about today. It's unclear whether they will try to remove that for now as well.

I'm just frustrated that I didn't imagine another round nor a lifetime of treatment. I'll look into your post. It's good to be part of one that has recent activity

Eschindler

Hi!

I am glad to see some people populating this thread. I also like Calling all TN's! I started this one because I was having trouble finding convos about specific issues related to the genetic nature of TNBC, like how we are going to talk to our kids about it, whether to have family members get tested, increased surveillance, and generally, all the new research that's coming out about BRCA-associated cancers. I don't know about anyone else, but when I was diagnosed, one of the things that was really hard was telling my mother, whose own mother and sister had both died of ovarian cancer. My mom had taken care of both of them, and it was really, really hard (and continues to be hard) for her to also take care of me without immediately thinking that I was going to die. I'll admit- it was difficult for me to be hopeful given my family history as well.

Anyhow, I hope we can continue to talk about it! Sorry I've been a little absent. Been having "fun" getting well.

xoxo!

sylviaexmouthuk

Hello cams,

I just wanted to say that I hope all this gets sorted out for you.

It seems to me that the radiotherapy would probably have got rid of any stray cells in the node. That is the purpose of radiotherapy. I had some kind of pre-cancerous deposits around the clavicle and one node affected. After chemotherapy, surgery and radiotherapy, I was told that I was NED (no visible evidence of disease). I have been in the clear ever since and I was first diagnosed in June 2005 with TNBC.

I do hope the planned procedures will clear everything for you.

You do not say in your details whether you have the BRCA1 or BRCA2 gene.

I wanted to send my best wishes and tell you to be positive about everything.

Fond thoughts.

Sylvia xxxx

Amazonka

Hi Cams, I have just read Your post. I understand that is must have been very discouraging to have reccurance after chemo therapy. I just share with You my story: I was diagnosed withTNBC in 2015. I could not accept chemo at that time. Only decided for surgery( bilateral mastectomy because of BRCA2 pos). I ve started to read lot of researches, healthy lifestyle books, diet, yoga , exercises...I have never felt better in my life. I was jucing, making healthy shakes every day, running...Then 6 months ago my CEA only was rising up. It was 5 at first, then 11, 22... Otherwise I was doing just fine. My CT chest scan made month ago showed axillary adenopathy on my right site( site where primary cancer was diagnosed). Now I have reccurence after 2 years. My onkologist told me that healthy diet and lifestyle does not matter , because my cancer is driven by gene mutation BRCA. However I still continue with juicing and good diet. Chemo is against my beliefs, but seems like I have a chance live longer after chemo. Oncologist told me that without chemo I might die in 1-2 years. I have two toddlers and I will make sure did everything possible to heal. Yes, I have watched all those series of True about Cancer and Gerson Therapy...Those protocols they are offer seem very promissing, but now I know I have to use them as a combination with conventional treatment. For me those natural methods did not work...and believe me I was working hard making thise juices, shakes, refuse pizzas and noodles.

Now I am scheduled on Chemo( ACT) and still I am not surenif that may work for me,but I will give a try.

Cams, I understand that you having reccurence after chemo. Please ask You onkologist if she/he can perform any personal genetic testing. They have some trails with Olaparib( PARP inhibitors) I was interested in such a trail and testing, but they told me first I have to do chemo. You did already, somYou may qualify.

Stay strong