I don't know what to do!

Eema

I was diagnosed w/DCIS in April. I'm BRCA-, I had melanoma when I was 17. I'm 46 and Have a 6 year old boy. My doctors want me to have radiation, but I can't take Tamoxifen, so I will have to have my ovaries removed, and will have the uterus taken out too, while they are Up there. I'm thinking mastectomy with construction might be better. I'm afraid of being disfigured by radiation. Any insights would be greatly appreciated! Thanks!

DiDel

I hope someone with DCIS responds to you ... I had multifocal IDC so an mx was my only option. I ahve to say I was NOT looking forward to radiation which was my course of treatment before the other tumors were found.

Do you have DCIS in both breast?? Why can't you take Tamoxifen

Diane

Jen42

I had DCIS in left breast only. I just turned 43 this month. Was candidate for lumpectomy/radiation/Tamoxifen. But lumpectomy would have been 1/2 my breast. Also surgeon told me I would have a 15% recurrence rate within in 15 years. After much research and soul-searching I decided on bilateral masectomy with reconstruction. Basically I did not want to have to worry about this again, if possible.  I am nearly 5 weeks post-op. The first 2 weeks are rough, then it gets better.  I do not regret my decision, I only regret being diagnosed with any kind of breast cancer at all.

My brother, unexpectedly, was a helpful voice in my decision-making process. First he pointed out that with our sensitive Irish skin, radiation would be nothing but problems for me. I believe his exact words were that I would end up "looking like a pizza". You have to know my brother to know he did not mean to offend with that comment. He also shared with me that he had melanoma on the side of his head (his temple area). He did not want to worry my parents (my Dad has been dealing with skin cancer most of our life) so he did not tell anyone. Plus he did  not have insurance. So he told surgeon to take the widest margins possible, he did not care if he was disfigured, just get it all out in the one procedure, so he did not have to come back for more surgery or worry about recurrence. (He did not end up disfigured, by the way.) I include his example of dealing with cancer since you mentioned you have dealt with melanoma, too. But his reasoning figured into my reasoning with the breast cancer  diagnosis...if that makes sense...

I have gone into more detail on my reasons for my decision on other threads on the DCIS site...search around there and you will find more comments from various ladies on what decisions they made. I hope this helps some...

pbgirl

Hi Eema   I just finished 5 weeks of rads post partial mastectomy and it was not nearly as bad as I thought it would be.  I was a bit pink and did get a rash over my breast but it is almost complete resolved.  My skin is slightly discolored (more like a tan now) which I'm told will also fad.

Good luck with your decisions.

cycle-path

Eema -- I too was concerned about radiation. My skin is so fair that I practically get sunburned from light bulbs, and of course there are other problems associated with radiation.

What I had, then, was Intraoperative Radiation Therapy, IORT. www.breastcanceriort.org Click the link to read about it. It's a one-dose radiation therapy that's done DURING surgery. The potential complications and side-effects of radiation are minimal with IORT.

The downside to IORT is that it's not available everywhere in the country, and many surgeons don't do it, which is very sad because it's much preferable to whole or partial breast radiation! But if you'll tell me where you're located (either here on the board or in a private message), I'll see if I can help you find a nearby doctor. 

Anonymous

Eema- I had DCIS in one breast and opted for a bilateral mastectomy (BMX).  I did not want to have to worry about a recurrence (also have a young son) and I know I would have had constant anxiety.  I was also concerned that if I did radiation and then later needed a mastectomy the radiated skin would make it challenging to do reconstruction.  (This doesn't happen all the time but can happen.)  But choosing between lumpectomy and mastectomy is such a personal choice and there is no wrong answer.  We all have to choose what is best for us.  And everyone on here will support whatever decision you make.  

If you do decide to go with mastectomy please make sure you find a really good breast surgeon BS) who is trained in nipple sparing mastectomy (NSM) and ask if you are a candidate. Usually with DCIS you are unless it is too close to the nipple or you are extremely large breasted.  (Too hard to maintain the blood supply to the nipple if if has too far to travel.)  This type of mastectomy is a lot less disfiguring when doing reconstruction afterwards, especially if you can find a surgeon who will do the incision beneath the fold of the breast.  (Not all of them do so be sure and ask.  Some still take it right through the center of the breast because it's easier for them!)  I would also encourage you to meet with several plastic surgeons (PS) who specialize in breast reconstruction.  There are a lot of different methods out there with pros and cons for each.  Unfortunately, each PS usually has their own specialty and encourages you to do theirs so that's why I say check out several.  The good thing (if there can be such a thing) is with DCIS you have time to research since it is not invasive.  Good luck to you.

Blinx

You may want to consult with a radiation oncologist, who may be able to better predict what your experience with radiation will be. Of course, there are no guarantees!

I had a lumpectomy and whole breast radiation for my DCIS. I glowed! When I got out of the shower, my breast was neon red. Really weird. I am fair skinned/freckled. I don't get tan, I burn. So when everything peeled, I was a wee bit uncomfortable, but it was doable. I would complain to my RO or nurse, and they just dismissed it, since there are FAR worse cases of radiation burn. I just don't know if they can predict who gets it.

As for disfigurement? Not sure what you mean. The nipple area is a little different - no more "headlights" on that breast. But there is still sensation. And no more redness.

Good luck. Weigh all of your choices -- as others have said, there is no wrong decision. And you will feel MUCH better once you have your treatment all planned out.

eileenr56

I am Irish.  redhead, fair. blue eyes.  I had a lumpectomy and radiation a hear ago.  I am taking tamoxifen.  I did everything they told me to do.  I did not put cream on within 4 hours of radiation.  but I did use cream a couple times a day.  I went topless as much as possible when I was home.  I know that sounds funny, but it is very comfortable, nothing rubbing against your skin and I personally think that makes a big difference.  always went braless.

I had no problems with radiation.  I got a little pink and closer to red at the boost site.  I never peeled.  After my lumpectomy, I had no pain.  I took one pill after surgery because I didn't know if I would have pain, but none.  I even had a recision to get bigger margins and no pain with that either.  I was very fortunate.

All of this is a very personal decision.  At the end of the day, you have to be satisfied with your decisions.  DCIS is not an emergency so you have time to think about your decision.  I personally would not get a Mastectomy until I have no choice.  but that is my decision.  I'm 57.  I have a cousin that had breast cancer 23 years ago and is still fine, so I use her as my inspiration. Hopefully, I'll be as lucky.

Eema

Thanks, everyone!I have a consultation with the surgeon tomorrow to discuss surgical options. I think I know which way to go, but I'm not certain. I need to talk to my radiation oncologist, too. Doing nothing is always an option, but I don't like the odds. I just want to be able to get back to my life!

Emaline

Yes you can be disfigured by radiation but a mastectomy is very disfiguring.  PS can rebuild them.  With a lumpectomy you could still have some feeling, though depending on the amount of radiation and reconstruction.  MX you will be numb, though some do get some feeling back.  My PS said I could get skin feeling back, but no breast sensation.  

DeeLJ

Eema, I am in the midst of making a similar decision for myself.

I met first with my surgeon who did the biopsy, then with a radiation oncologist, then with a plastic surgeon. My last appt is next week with a medical oncologist. I had all of them tell me about their specialties, what risks/benefits I may expect. None of them told what I SHOULD do, they just gave me their insights into their specialties, and what they COULD do. 

I would not be good with tamoxifen either, so I am hesitant about rads only, and am leaning towards bmx. I actually have the two surgical teams working on a date for me (my surgeon removes them and my plastic surgeon puts in the expanders and puts me back together). Its a 4 hour operation. A tram would be 8 hours and that's one of the reasons I will go for implants versus tram. I don't want that long a time in anesthesia.

I am hoping the medical oncol. will have some type of miracle solution but I am not betting on it. I just can't make a final decision until I know I've explored all my options.

Good luck to you on your road to decision. Its sure not easy but you need to have faith in your own ability to choose. Neither choice is fun, but the choice has to be made. I struggle too.

cycle-path

Emaline said: "With a lumpectomy you could still have some feeling..." Really? I haven't lost any feeling as a result of my lumpectomy, though mine was fairly small.

Emaline

That is awesome cycle-path   I completely agree that some women do retain feeling and I've heard that many that are numb do regain it back over time, however I know some women don't. I think it depends how and where the surgeon cuts.  I had excisional biopsy done in two areas of the same breast. Each incision was over an inch long and they took out a sizeable amount. One side I lost feeling, the other I didn't. Go figure!

SJW1

Eema,

I think if you knew what your odds of recurrence were with and without radiation, it would help you decide what is best for you. You can use the Van Nuys Prognostic Index to calculate if radiation would benefit you. However, you won't be able to do this untils you have surgery, because your margin size is one very important element used in deciding this. 

If you get good margins, your score on the VNPI might be low enough to omit radiation and/or tamoxifen. In 2007 when I had DCIS, I consulted with Dr. Michael Lagios, a world renowned DCIS expert and pathologist with a consulting service that anyone can use. Once I knew my chance of recurrence was only 4 percent, the 50 percent risk reduction that radiation typically provides was not enough for radiation to make sense for me. However, if your risk is 30 percent for instance, you may want to consider radiation. Much of it will depend on what you feel is best for you.

If you have questions, feel free to PM me or read more about my story on my website:

https://sites.google.com/site/dciswithoutrads/home

Wishing you all the best,

Sandie

sweatyspice

Why do you think you will be disfigured by radiation?

cinnamonsmiles

Please be aware that a mastectomy does not necessarily mean that  you will be free from radiation. I am not sure how often it happens with DCIS, but if  your  margins are not large enough, you still may have to undergo radiation. I think  it is a misconception by some women that mastectomy means no radiation. I was prepared mentally going into my BMX with SNB that there was always a chance that I would need radiation. I was lucky, however.

Eema

No, I won't need radiation with my mx. I had the choice of mastectomy or radiation and tamoxifen, and I cant take tamoxifen, so that pretty much decided it for me.

remmi05

I am 4 1/2 months post-op from a LB mastectomy.  Didn't have reconstruction.  I had previously had radiation 12 months before.  Had severe burns that lasted for a few weeks, but eventually went away.  Because I had a recurrence after 12 months, my only option was for mastectomy.  I still have bruising on my chest wall and my surgeon has Only 2 weeks ago I had my yearly mammo on my right side which suscpicious calcifications and on Monday had my stereo biopsy.  I have had 7 of these biopsies in the last 6 years and this one was the worst, probably because of the position of it - right near the axilla.  Needless to say, I was very fearful of another diagnosis of DCIS recurrence.  Couldn't bear the thought of going through another major surgery so soon after the last one.  Got my results the next day and all was good.  It was a benign fibrocystic tissue, which apparently is quite common.  Now I need to decide where to go from here - do I go through this anxiety every 12 months or do I go with a mastectomy?  Have an appointment with my BS in mid-August to discuss my options.  Good luck!

Kristi_in_MO

Eema, I had a hysterectomy/oopherectomy in December.  Then was diagnosed with DCIS in May. BRCA 1&2 came back negative.  They caught mine so early that I had lots of choices for treatment.  For me, I am a mom and was afraid of it coming back and the radiation I'd have had to do this time making it not as good for reconstruction later if it did come back.  So, for me, I felt it best to have bilateral mastectomy.  Just had surgery on Wednesday and am in lots and lots of pain, much worse than what I had for my lap. assisted vag. hyst.  Unless biopsies come back bad, I will not have to do radiation, chemo or even tamoxifen.  I would be lying if I said my breasts look nice right now, far from it, but I had looked at enough pics. online I'm not as shocked as I would have been.  Trust your instincts and do what you feel most comfortable with being right for you.  Remember you are not alone.

Eema

Kristi, you sound like me. I'm afraid of radiation and recurrence and am having surgery Aug 2. Did you have reconstruction?