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

go to the  FORCE web site:

www.facingourrisk.org

Advocacy and LOTS of information for women the BRCA mutations.  You will meet lots of women facing the same decisions.  I think this will be helpful.

I feel like Mr. Andrews in Titanic going to Rose, "Get to the lifeboats. Don't. Wait." By which I mean, mastectomy is highly indicated in your situation. That BRCA gene is not good, not good at all. I am concerned that you will spend time looking into lots of other options, while really you want that cancer out of you asap.

I am so sorry you have to go through this. My mom had a mastectomy and immediate reconstruction, and they made a new nipple complete with tatto'ed aureola. It looks good, it really does. I have also read about other women on here who are happy with their results, appearance-wise. I know one lady who is 78 and another who is 81. Both had breast cancer 25 years ago, had mastectomies way back then, and went on to live full and healthy lives, and are still kicking. One has been married twice since then, so the implants don't seem to have slowed her down any!

It must seem like the end of the world to you right now. I know you're upset but your surgeon isn't just about cutting and throwing stuff away (ROFL!) These measures are being offered in order to save your life. But I am seeing things from the other side, or the end of the journey, with my mom who was recently diagnosed with Stage IV after beating it 13 years ago. Turns out that the cells back then had spread anyway.

So get to the lifeboat. Don't. Wait. That's just my persepctive as the daughter of a Stage IV-er.

Hmm, well they had their surgeries in their fifties which is still a far cry from 34, yes. However, if you've received a diagnosis and you have the breast cancer gene as well, the doctor is proposing whatever treatment she thinks has the best chance of saving your life. But of course, someone of 34 has very different concerns about the treatment from those of an older woman. There is a forum on here for young women who have been diagnosed with breast cancer. Maybe connect with them, and see what they say. They might have looked into breast-conserving options too, and have more info about it. Also, there is a whole website devoted to younger women with breast cancer, some of whom are survivors and some of whom are high-risk. The site recognises that younger women at diagnosis have a unique set of concerns. The site is www.brightpink.org.

I think the option of hyperthermia should be discussed with your doctor. See what they say.

You are clearly in a lot of shock, and I don't blame you. Could your doctor refer you to a counsellor who is trained in this area? It might help you in coming to terms with this diagnosis.

It must seem like the end of the world. It is always darkest before the dawn. I'm not in the same situation as you but still recovering from the total shock of Mom's terminal diagnosis two weeks ago, and I have tried to live in the present, to live in today, instead of letting my imagination run riot about what the future holds. Because all we have is the present. The past is gone, and the future hasn't happened. We only have today.

Do let us know how you get on and keep us posted about how your journey unfolds. Folks on this board are always here for you.

Soft and gentle hugs to you xxx

This is a tough position to be in, but - unfortunately - with breast cancer, youth is NOT in your favour.  Being BRCA+ is also very, very concerning.  Although I'm not sure I would feel comfortable with your surgeon's brusque manner either, I feel very strongly that someone in your position should be seeking another medical opinion before you begin to explore
alternative options. 

I have to agree with Selena and Jen.  Your young age combined with the brca2+ puts you at high risk for an invasive recurrence.  If you are considering lumpectomy, you should ask about getting an MRI guided biopsy of that other suspicious area of calcifications.  You don't know yet if you are dealing with a small area of invasive disease.  Knowing that might influence lumpectomy vs. mastectomy.  It is good that you are getting second and third opinions.  You need to have a surgeon who recommends mastectomy based on the facts.  About the bilateral mastectomy, many people don't need that, but prefer it because they don't want to be worried about possible occurence of bc in the other breast in the future, or they do it for cosmetic reasons. For many people, the risk of breast cancer in the other breast is not exceptionally high.  In the case of those with brca genes, the risk of a second primary cancer in the other breast is very real.  This must be extremely scarey for you.  I wish you the best.  Do go to the FORCE website as well as threads on this website for those who are brca positive. Best of luck. 

Aj



I think you need to go over to the alternative forum. There are loads of topics and support avenues for you to explore and digest..



by chance has an oncologist gone over your chances of recurrence with and without the various forms of conventional treatment? Those stats sure can be sobering



As the other posters said it's your body and your decisions. Whatever you decide has to sit well with you. All of the early decision making is so confusing and upsetting.



I will just say that breast cancer is no joke. I was dx at age 41. My tumor had been brewing

for several years prior and had begun as dcis. 30% of my tumor was dcis. Most surgeons would prefer breast conserving surgery. However if the area of involvement spans a large area , like 6 cm, it becomes difficult to conserve the breast at all. My area of involvement was greater than 6 cm as well. Lumpectomy wouldn't work because my area spanned the entire breast. Hence mastectomy. I did double because I was scared shi**less that it could return. I was stage 3 , double mastectomy chemo rads etc. From my slanted viewpoint , you are in a great position to get rid of this and never have to look back.

I should also add that there is MUCH statistical evidence to back up exercise as a prevention of recurrence (sometimes in excess of 40% risk reduction). So get it out of you and then do all you can to reduce risk for it to come back via the other camps you mention.



I cut it out of me and cut out ovaries, diet and exercise but I still worry about it coming back EVERY day.



Really shitty diagnosis to process. But yours is early stage and actually quite curable.

AJ123abc: 

Being brca positive puts you in a different category than most of us.  There are many people who are possibly being overtreated for DCIS, because it is usually difficult to discern who is at risk for a recurrence.  The grade of the dcis or size of it may be one risk factor, but in a given individual, we can't say if recurrence will likely happen to them.  With brca genes, the chance of recurrence is much more clear (albeit not perfect).  Would you be comfortable with a lumpectomy, at least?  and possibly radiation?  That would probably be better than putting all hope on alternative medicine.  I realize that it seems like bc treatment is big business, and it especially feels that way for DCIS, but at the same time, you are in a different situation than most.  If the docs are recommending aggressive treatment, it is not for financial gain.  It is really to give you a chance to reduce your recurrence risks substantially.  Did the Stanford and UCF people nix the idea of a lumpectomy in your case? I feel your pain.  I didn't want to lose my breast either, and I went to some length to succeed at breast conservation surgery (after being told by one surgeon that he has a "bad feeling" about my breasts and recommended bilateral mx). I will say that if I were brca positive (which I tested negative), I would have gone on to the mastectomy.  Take your time to weigh all of the alternatives.  Best of luck to you.

It's not possible to have a stage 0 cancer that is also 6cm. In your original post of Dec 24 you say that you are "going" to see three surgeons "in January" at three different centers. Somehow, magically, you managed to see all three by Saturday 5th January, according to your post. In your last post, you mention going to a medical centre that is not listed in your original one. Four cancer surgeons at four separate centers in three working days since New Year? Wow, you must be a rock star. Your "diagnosis" made me suspicious right away, because it's not possible to have a Stage 0 cancer that is also 6cm. Size is a huge part of the staging. When I questioned you about that above, you ignored it. If you were truly in distress, you would have thanked the kind ladies here and you have not said thank you once. There is also a pattern whereby you spout your alternative propaganda and then, in the last paragraph, you say stuff like "I'm crying I write this" as the appropriate injection of emotion.Your utter lack of emotional response to the kindness and warmth of these many posts is also indicative of a cold, sociopathic poster with an agenda. In addition, you have been given numerous links to other organisations and you have been advised to head over to the alternative medicine section. You have ignored all mentions of these avenues and have not even thanked the posters for pointing them out to you...because you don't need them, do you?

You are some tragic activist of some kind who's against all conventional medicine and you have come here to torment genuine cancer patients. Your description above of breasts being thrown away "for dogs to eat" is beyond disgusting, in a forum full of recovering cancer patients and their relatives who have undergone lifesaving surgery. Even if you were genuine - which I highly doubt -  you have mentioned butchers once too often. Your posts have zero genuine emotion and are stuffed full of activism. You need to stop going on about butchers and dogs eating body parts to folks who are battling life-threatening illnesses. You are a human being too, with the same active cells as anyone else. I do hope you don't ever develop cancer yourself...

Now get off this forum and don't come back, before I have you investigated for cyberabuse. Yes, police can tell where you're posting from.

Homebody, AJ123abc listed her stats elsewhere as DCIS, which is non-invasive bc.  Pure DCIS, no matter what the size, is always Stage 0.  So, yes, it's entirely possible to have a 6 cm. area of DCIS and be Stage 0.  

Also, there is no right or wrong way to react to a bc dx.  I haven't read all of her posts so can't comment on the possible inconsistencies or insensitive phrasing.  But I've read enough to  grasp what sounds to me like incredible frustration and anger, which I think sounds pretty genuine.  

AJ123abc, have you thought about possibly having a consult @ one of the major integrative cancer centers?  The Block Center in Chicago is ranked #2 in the world.  Cancer Centers of America also offers an integrative approach, although I'm not sure either of them would advise forgoing surgery with a BRCA positive dx.       Deanna

Homebody,

Dlb is correct. Please read all parts of your link. It clearly states that dcis can be any size.
Diagnosis of DCIS-

All DCIS is considered stage 0 breast cancer — the earliest stage possible. "Stage" describes how far the cancer has spread beyond the site of the original tumor. Even though DCIS is always considered stage 0, it can be any size and be located in any number of areas inside the breast.

On the link that you gave, click on the blue highlighted area that says dcis. Then click on the part that says Diagnosis of DCIS. Scroll down that page a bit and you'll see the part I copied above.

I don't know anything about the person you're referring to, but DCIS can be very extensive.

Caryn

Homebody, thanks for picking up on that typo, which I've corrected.  The grade of DCIS can vary, but it's always Stage 0, no matter what the size.

If you click on someone's screen name, you will see all of their most recent posts.  

AJ123abc's choice of phrases may be offensive and inconsiderate, and some may even violate the terms of use of this board, although I haven't bothered to look.  Now that the offending language has been pointed out, hopefully she'll realize that it is hurtful and offensive to some.  If not, you can block any member whose posts upset you.     Deanna