Under 35 with breast cancer and also BRCA2+: What to do?

AJ123abc · January 2013

thanks Deanna...

What got me to do BRCA testing was right after my diagnosis of DCIS at the recommendation of the surgeon who was treating me at the time. I dont the paper work with me to give you the name right now, but as i understood the genetic testing is done by one company for the entire U.S. I am not sure if there could be an error made or nor. This is something that always crosses my mind. The test costs about $4000 (insurance pays 80% of it though). Though I read afterwards that having insurance pay for the cost and if the results are not favorable, they may discriminate against you (both in terms of getting insurance and also at work). This is of concern but at this time this is the last thing I want to worry about...

What started this whole thing was when I started getting some blood like discharge from my nipple about 3 months ago which led me to doing mamo, which let me do biopsy, MRI and to where i am today...

Thanks,

AJ123abc · January 2013

thanks Deanna...

What got me to do BRCA testing was right after my diagnosis of DCIS at the recommendation of the surgeon who was treating me at the time. I dont the paper work with me to give you the name right now, but as i understood the genetic testing is done by one company for the entire U.S. I am not sure if there could be an error made or nor. This is something that always crosses my mind. The test costs about $4000 (insurance pays 80% of it though). Though I read afterwards that having insurance pay for the cost and if the results are not favorable, they may discriminate against you (both in terms of getting insurance and also at work). This is of concern but at this time this is the last thing I want to worry about...

What started this whole thing was when I started getting some blood like discharge from my nipple about 3 months ago which led me to doing mamo, which let me do biopsy, MRI and to where i am today...

dlb823 · January 2013

Well, this might be far-fetched, and I apologize if it is... But you might want to read through this, especially since you're an engineer, so might understand technical speak better than some of us:

http://www.cdc.gov/genomics/gtesting/file/print/FBR/BCAnaVal.pdf

And here's another website you may have already read through, although I'm not sure it addresses the margin of error as the first link does:

http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA

The fact that you have no first degree relative(s) with bc is what has me thinking along these lines today -- although I suppose it's possible that someone in your family may have had un-dx'd bc in a previous generation. Deanna

dlb823 · January 2013

Two more links for you:

http://www.intelihealth.com/IH/ihtIH/WSIHW000/8293/24178/353572.html?d=dmtContent

http://www.aetna.com/cpb/medical/data/200_299/0227.html ("In some cases, false-positive results can arise due to the presence of a clinically insignificant polymorphism in one of the BRCA genes.")

AJ123abc · January 2013

Thank you so so much Deanna... i will go through them...

I have had no Breast or overian cancer history in my family (neither from my mom's side nor from my father's side) for at least the last 4 generations.

Having said that, from my father's side, 2 of his younger brothers (my uncles) have had to deal with cancer: One with skin cancer, and the other with clon. Other than that, no breast or overian issues from either side of the family.

Thank you so much again for the links... the only thing is I am not sure how to go back to them and ask them if the tests would need to be re-checked to make sure they are accurate...

Funny how we take certain things for granted til it hits us... like i said til; 2 months ago my biggest worry was whether my technical presentation to a bunch of engineers in Europe, China and India would go well... and today I am worried about what I am facing...

Momine · January 2013

Deanna, I had the same thought.

AJ, you may want to have them double-check the BRCA finding.

beacon800 · January 2013

If your uncle had melanoma (but not other skin cancers such as basal cell) that is within the BRCA spectrum of cancers, but it's a thin piece of data.

You could be the "de novo" mutation in your family. Any siblings? If so they should seek this test. Having such a big area of high grade dcis at an early age is likely what prompted the testing and that seems a reasonable call.

I asked cause most BRCA ladies I know don't wait a minute to get surgery. Generally they have seen the outcome in the family members and have no hesitation. Do not underestimate what you are dealing with if you are BRCA+. Honestly, it's not a thing that lends itself to alternative therapies from all I have seen.

Edited to add: what is the hormonal profile of your dcis? Meaning is it estrogen/progesterone positive or negative? Did they test it for Her2Neu? (they didn't used to test DCIS for HER2 but these days I think they do and in your case they should).

jenjenl · January 2013

You don't ever tell anyone employers or anyone that you carry the genetic mutation. It is NONE of their business. Insurance companies can tell but if you go through you work to get insurance it shouldn't be a problem...I just went through it EOY and it was a none issue. Now that might be different if you are a contractor or get individual vs group insurance.

Mardibra · January 2013

I was 44 at dx with no history of BC in my family. I was approved for BRCA testing because melanoma skin cancer killed my sister. It is thought that there is a link between melanoma and BC. Thankfully, I tested negative. However, here I am with BC.

As others have said, BRCA positive status is a total game changer. Also, you don't actually know that you don't have IDC until after surgery. Trust me, you don't want IDC and all that comes with it. If you have DCIS only, your in a good spot as far as BC goes. My pathology showed both IDC and DCIS and docs have surmised that I started as DCIS only that eventually became IDC. Problem with DCIS is that you don't know if or when the molecular cell change will occur and cause IDC. That is why MX is recommended. Add BRCA to that and I'm surprised they are not suggesting a BMX. Lots to think about.

Good luck to you.

Melinda_in_NC · January 2013

I am BRCA2 with no family history. They tested me because of my age alone regardless of history. Reluctantly, a few weeks ago my father finally got tested after mom was found to be negative. He was the carrier. No cancer on his side until me.

There is a new law, GINA, that protects us from discrimination.

I was exposed to one of the clinical trials for hyperthermia in inflammatory breast cancer at Duke. That was over 5 years ago and it has not progressed to a larger scale clinical trial. Not to mention the pain it caused the patients. But IBC is a much different cancer than DCIS.

Finally, I work in clinical trials for a pharmaceutical company. I can guarantee you that in my experience, we just want to get medicines to patients that need them. It's why we show up to work. The corruption, or conspiracy, seems to happen when government gets involved.

Again, sorry you have to make these decisions.

Did you go to the FORCE website yet?

AJ123abc · January 2013

Hi Melinda,

Thank you for your note...

As painful as it is, as tearful as it is, I am inclining more and more to the idea of bilatiral mastactomy. Still though I want to seek this hyperthermia option as offered by Bicher Institute in L.A, but after reading all comments on this thread and other places, I have come to genuinely understand the dangers of having DCIS and the potential re-occurance of cancerous cells (which may or may not be DCIS again), hence I am inclining more to doing mastectomy.

One question I have... how long after the surgeory does one feel normal again for having re-constructed artificial breasts? Can it ever be normal again? I am 34 and the one thing I know i can never experience is the privilege of doing breast feed my child when the time comes for me to have a child. Anyone can tell me how to deal with this? What would your advice be as how to deal with this?

I am scared, and i literally now understand what "pain" is. Pain is no longer an abstract concept to me, or a conceptual model where all those sitting on the other side so passionately refer to when facing what they consider as pain.

Melinda_in_NC · January 2013

I am too early in the process to comment on normal. But just prior to my last few surgeries I have approached some sense of normalcy. It is hard t o see the possibility now, where you are in the process, but it will come. It will just be different normal.

The reconstructed breast can end up looking pretty darn good, but I'm not sure I would call it normal.

Grieve the loss because it is a loss. A loss of innocence and hope, physical loss, and loss of how you saw your future.

But know, that you will have a future and hope will return.

Seek out a fertility specialist and genetics counselor. Seek out a cancer therapist, Ucsf should have one, to talk it through. It's more than just breast feeding, unfortunately, as a BRCA2 carrier, that is impacted.

I promise you will feel better once you have a plan to deal with the diseased breast.

Momine · January 2013

AJ, breast feeding is not all it is cracked up to be, and even with boobs you could have complications that prevented you from breastfeeding. Win some, lose some. The way I dealt with the loss was to focus on the upside. My main concern is to be cancer-free and stay that way. The rest is details.

However, that is not to say that it is easy necessarily. Again, I urge you to talk to the FORCE people, find a real life support group, talk to a counseler, do anything and everything to help yourself through this.

As far as recon, talk to 2-3 plastic surgeons. Don't pick the first one that comes along. Keep going till you have someone you trust and really feel is on the same page as you. In general, boobs made from your own tissue feel and look more natural than implant ones.

Also keep in mind that recon can be delayed. There is no rush. The rush is only to get rid of the stupid cancer.

AJ123abc · January 2013

Friends,

I am signed up to go through a double mastectomy. However, I am wondering now if I should leave my right breast which is healthy with no issue alone and just go with the mastectomy of the left breast with DCIS and reconstructive surgery... This new study http://video.today.msnbc.msn.com/today/49991794 says chances of re-occurence in the other breast is 5-6%. But i am also BRCA2 positive. What should I do?

Momine · January 2013

Because of the BRCA, I would go for the double. Then again, I went for the double even without being BRCA-tested.

jojo38 · February 2013

Hi AJ,

I was dx w/TNBC on 01/30/13 w/a 6.5cm mass in which appeared last year (1/2 the size), but after a neg BC mammo, my family doc suggested I see my plastic surgeon thinking mass was due to saline implants under muscle. I waited and continued being an active stay home mom/entrepreneur. My mass became bigger and started to be more prominent (right breast @ 9 o'clock) so I went & saw my plastic surgeon. I immediately knew my mass was not due to my implants by my surgeon's facial reaction. With his concerning face, he instructed me to go back to Kaiser & demand an ultrasound in which I did. Tomorrow, I begin the journey of additional tests. I've already had a core biopsy in which I received my dx.

Though my mass is in my right breast, I have talked to a handful of local BC women (different types of BC) who all told me if they had the chance to go back, they would of had a double mastectomy vs a single mastectomy or a lumpectomy. The reason...BC showed up again on opposite breast. For us, TN is so aggressive that after reading many threads, the most success from it reoccuring is when a double mastectomy is performed. I know I don't want a repeat of treatment. i think of the positive...being so young, I'm looking forward to newly constructed boobies that won't kill me.

I'm sorry to have heard your news, but you gotta think positive and look at all our brave sisters (young & older) who are BS survivors .

I know it's terrifying. I was there too two weeks ago, but we can do this! We are strong & are built tough (even though we may sometimes feel weak). Stay positive & I send some tight hugs your way </p>

karody · February 2013

I was a 35 year old mother of two with a full time career and competed in athletic events on the weekends when I was diagnosed. I secretly thought that I had chosen to be a healthy person and that most people with illnesses could have prevented them if they had chosen to live a healthy lifestyle as I had. My first instict was sadness that I could not control my body and suspicion of each of the medical professionals who were treating me. Here is what you need to know:

You are not to blame for this cancer. Sometimes things just happen. You cannot will it to go away any more that you willed it to appear.

These professionals have dedicated their lives to saving people. Listen to them. They are the people with the tools to make this cancer go away, so let them do it.

In order to be an FDA approved treatment, the treatment has to show that it is both efficacious AND safe. "Alternative" or "natural" generally means unproven...at least unproven in the standards of modern, peer reviewed, published trials. Almost any therapy that you can do in addition to standard accepted therapy, can't hurt, and might even help. So I would say that dietary changes might be a great addition to your therapy. However, immediately be suspicious of any therapy that claims to replace standard therapy. I love the idea of making your body inhospitable to cancer and I believe there is evidence to suggest that diet is a very important component of cancer prevention/treatment. But do not allow it to replace standard therapy. Your life is worth too much to gamble on a theory.

cmreisner85 · February 2013

Kaiser eh? They misdiagnosed me too. Luckily I switched insurance a couple weeks later, or it could have been really serious. Thank goodness you were persistent or you may have fallen through the cracks

AJ123abc · February 2013

Sisters,

I underwent a bilateral mastectomy about a month ago. Still have one drain attached to me. They also found that i did not have just DCIS, and had 0.9CM invasive grade 2/Stage 1 cancer. Fortunately it had not spread and they caught that just in time, and fortunately I also was found to be HER2 negative.

Just met with my oncologist, and because of the invasive cancer they found and although very small (under 1CM) she is recommending that I should take Tamoxifen for the next 5 years for prevention purposes of not having cancer coming back and/or showing up somewhere else. And of course I DO NOT want to do so because of all the horrible side effects - especially given my young age.

What should i do? I did go along with the bilateral mastectomy (even though my right breast was OK), but to take Tamoxifen is pushing it to the edge. The funny thing is, they can not guarantee that taking Tamoxifen does not prevent for the cancer to come back, it just reduces the risk. But at what cost? The side effects of taking this drug are as bad as what it is suppose to prevent from happening - including introducing cancer of its own.

Momine · February 2013

I understand that you do not want the tamox. However, given your age and the BRCA+ it really is sound advice by your onc.

The other option, but it has serious downside as well, is to take out your ovaries and go on an aromatase inhibitor instead. Most docs would prefer the tamox, as it is less invasive.

As for how much it will reduce risk, you should ask your onc to break that down for you in as much detail as you need in order to make your decision.

AJ123abc · February 2013

That is the thing... Taking Tamoxifen does not guarantee anything except that it "may" reduce having the cancer to come back and that for sure it will have its own side effects. So here I am asking myself, why on earth should I take a drug that is guaranteed to introduce horrible side effects to my health (including the possibility of causing cancer itself) in the interest of the "possibility" of "reducing" the risk of cancer not reoccuring? Per its description: A report in September 2009 from Health and Human Services' Agency for Healthcare Research and Quality suggests that tamoxifen, raloxifene, and tibolone used to treat breast cancer significantly reduce invasive breast cancer in midlife and older women, but also increase the risk of adverse side effects.

I am not midlife nor an older woman!! I do not have breasts either anymore to worry about getting invasive breast cancer. So I am just trying to understand the logic as why I should take a drug that is guaranteed to have adverse side effects for a woman of my age, and yet can not guarnatee of suppressing cancer completely. i just do not understand.. dont know... simply simply dont know..

I believe in simplicity. We have come to believe in having quick fixes to the problems without understanding why such problems come to exist to begin with. We have to take care of our bodies and most often we forget as what does "taking care of" mean. Taking care means, having a strong healthy nutrition, having no stress (or not so much of it). And doing exercise. Simple things that have come to be forgotten or overlooked.

I was at Costco a couple of days ago as my friend took me to buy organic carrots. As I walked around with my 4 drains attached to me, I stopped and noticed that every where I looked, they were giving away food samples in the hopes of selling more of them. These food were nothing but artificial perservastives, processed food, and sugar, and god knows what hormons and and "other things" they had to make them taste good to fool people in buying them. People were just taking them without realizing how harmful those things were to their health. It is like taking poison without realizing it. I was like that prior to my situation. And now I realize, how foolish we can be when it comes to our own health. I have now turned to a total vegan, healthy food, no animal bi-product (including no meat, no chicken, no fish). Nutrition is the key far more effective than any chemical based drug.

Cancer does not happen by itself. There is a cause. Given the drastic increase in the number of cancer cases (especially breast cancer), I am really not surprised. What else can we possibly expect? Junk food is all over, we take them and then expect having a healthy life?? And then... when we run into health problems, we seek quick fixes through drugs such as Tamoxifen which introduce even more horrible things to our bodies - and it then becomes a vicious cycle with getting more and more drugs to have quick fixes to the side effects and/or issues we come to face - that otherwise would not have happened (or at the minimum reducing the risks) had we followed a healthy life style.

Momine · February 2013

AJ, unfortunately, with cancer there are no guarantees, because we do not yet have the cure. All we can do is try to increase our chances of keeping the beast away.

However, do keep in mind that just as the tamox can't guarantee a cancer-free future, there is also no guarantee at all that you will have horrible SEs. Many women take the stuff for years with few or no SEs.

I went the ooph and AI route, because I was 47 at DX and close to menopause anyway, plus I had some problems with the downstairs equipment anyway. So far, I have some achy joints in my feet on and off. It has been almost a year and that is really the worst SE so far.

It is weird that so many women and especially so many younger women (I even count there being that I was under 50 at DX) are getting this stupid cancer. It does suggest that it is at least partly something environmental. Problem is, we really don't know. I do think it is a really good idea to eat as clean as possible, get exercise and lots of it preferably and to destress. Only problem is that none of those things offer any guarantees either, but at least they will make us feel better and stronger, unlike most of the treatments.

Anyway, I really hope you talk this over carefully with your onc and that you bring up all your concerns.

AJ123abc · February 2013

Momine, what is even more convincing me to NOT take tamoxifen is the fact that with this beast, everyone (including the doctors) says 'We dont know". That is:

We dont know if the side effects of using the drug happen.
We dont know if using the drug will for sure suppress the cancer from coming back.
We dont know what causes the cancer.
We dont know... and we dont know...

I no longer have breasts. My left breast had DCIS + 0.9cm invasive cancer fortunately not spread to anything and lymph node ok.

I took out my right breast even though it was perfectly fine. i did this because I was told "We dont know for sure that the cancer may spread to the other breast, but just to be on the safe side lets take it out". So I did so.

The whole thing is based on "We dont know".

If that is the case, then I rather go with the 'We dont know if the cancer will come back" as oppose to "We dont know if taking the drug will for sure prevent it but there is a "chance" it can reduce the risk. However we DO KNOW that taking the drug WILL introduce bad side effects.

Yes, I am scared. I am scared. BUT I can not understand the logic I am told for taking a drug intentionally that I know will have side effects on me at my age... i wished I knew.. I wished and wished I knew for sure what to do..

Under 35 with breast cancer and also BRCA2+: What to do?

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