Decision making tourture.

Hi Stacie-Rose...I don't want to sway you in any direction but can only tell you how I feel. I had a DMX in June 2010 for DCIS. My mother, grandmother and great grandmother all died of breast cancer (I was adopted and got that info 10 years ago) Before surgery I had wanted a breast reduction because I felt that they were awful looking. When I was preganant I was an I crazy huge, you know G H I. So they were completely ripped off my chest wall. I was told I could avoid, chemo, radiation and tamoxifen which avoids menopause right now. Well I thought I'll probabley get more cancer or they said 15% chance other cancer was there just not detected. If I had radiation I knew that would impact reconstruction in the future if needed. Well...I have second guessed myself to death. Not to be to personal but having breasts that don't have and feeling in them really decreased sexual pleasure and desire, I realize many women are stuggling to live so this may sound superficial but that can really affect your relationship with husband or significant other. I really haven't let my husband see them and he definately hasn't touched them. I got implants and if you have read any of my other postings you'll know how much I hate them. So if I could go back I would have had the lumpectomy. Hind-sight and all. You know, no one ever told me I was over treating everyone seemed to think I was doing the right thing. This of course makes my husband very mad. He feels that I  100 % made the smart decision. Well anyway if you want to ask me any questions don't hold back. I'm an RN and really don't want to give any advice just let you know my experience. Happy New Year.   

You should also check out the article (link below)  about the new oncotype test for women with DCIS to help determine if they need radiation.  That may help you make your decision.

http://www.breastcancer.org/symptoms/testing/new_research/20111207.jsp

Also something else to consider - if you have a lumpectomy first and they do not get clear margins you can then go back and have a mastectomy.

I had a lumpectomy, chemo and radiation for my IDC, and am happy with my decision. I must say honeatly that I chose lumpectomy because I did not want to lose all sensation on my chest by having a mastectomy.

You must make a decision that will give you peace of mind and fit in with the quality of life you want for yourself. That should be the overriding reason for whatever decision you make.  

Judy 

I was in this same situation exatly four years ago. I was a bit older than you (49 at the time).  I decided on the bilateral mastectomy.  It was that OR radiation and tamoxifen.  Neither appealed to me then or now for that matter!! I can say without a doubt it was the best decision ever!! Not only did I avoid radiation on my left (heart side) but I didn't have to do any horrible drugs like tamoxifen.  Also, my sister-in-law didn't get a mastectomy after her diagnosis, and now she is dying of this horrible disease (she just went into hospice last week).  I would do the same thing again now and i just feel like getting these breasts loped off was the best decision I ever made.  My sex life is better than ever by the way, but then, I have the best husband EVER!!! Good luck to you and whatever decision you make, it will be the right one for you!!! Hugs!!!!

"initially the surgeon told me that the recurrence rate with lumpectomy and radiation tends to increase by 1% per year"  What???  That's not true at all.  Most local recurrences happen within the first 5 years. Your recurrence risk over the next five years is lower and then it declines even more significantly after 10 years. So it is absolutely untrue that recurrence risk increases by 1% every year.

That aside, the decision between lumpectomy, mastectomy and BMX is a difficult one. Following is a list of considerations that I put together a while ago for someone who was making this choice. I've posted this quite a few times now and have continued to refine it and add to it, thanks to great input from many others. Some women have gone through the list and decided to have a lumpectomy, others have chosen a single mastectomy and others have opted for a bilateral mastectomy. So the purpose is simply to help women figure out what's right for them - both in the short term but more importantly, over the long term.

•  Do you want to avoid radiation? If your DCIS isn't near the chest wall, then it may be possible to avoid radiation if you have a mastectomy. This is a big selling point for many women who choose to have mastectomies. However you should be aware that there is no guarantee that radiation may not be necessary even if you have a mastectomy, if some DCIS is found near the chest wall. Radiation might also be recommended if it turns out that you have a large area of invasive cancer in addition to the DCIS and/or if it turns out that you are node positive (which is only possible if you have invasive cancer). Hopefully this won't be the case but you really don't know your diagnosis until all the surgery is done. In about 20% of cases, those initially diagnosed with DCIS are found to have some invasive cancer, although usually just a small amount (which doesn't impact treatment)
• Do you want to avoid Tamoxifen? For those who are ER positive who have DCIS, this may be possible if you have a mastectomy and particularly if you have a bilateral mastectomy. Tamoxifen provides 3 benefits: 1) It reduces the risk of local recurrence; 2) it reduces the risk of the development of a new breast cancer in either breast; and 3) it reduces the risk of a distant recurrence. For most women, a mastectomy will reduce the first risk to a low enough level that the benefit from Tamox will be minimal. For most women, a bilateral mastectomy will reduce the second risk to a low enough level that the benefit from Tamox will be minimal. The third benefit, protection against a distant recurrence (i.e. mets), isn't a factor for women who have DCIS, since by definition DCIS cannot move beyond the breast. However for those who have invasive cancer, this is a crucial benefit and is not affected at all by the type of surgery. So if you have an invasive tumor that is ER+, usually Tamoxifen (or an AI) will be recommended whether you have a lumpectomy, mastectomy or a BMX. However if you have DCIS (and therefore face virtually no risk of mets) or a very small non-aggressive invasive tumor (and therefore face only a very small risk of mets), it may be possible to pass on Tamox with little change in your long-term prognosis.
• Does the length of the surgery and the length of the recovery period matter to you? For most women, a lumpectomy is a relatively easy surgery and recovery. After a lumpectomy, radiation usually is given for 6 weeks. A mastectomy is a longer, more complex surgery and the recovery period is longer. How do you feel about going through a longer surgery and a longer, more restricted recovery period?
• Do you plan to have reconstruction? If so, be aware that reconstruction, even "immediate" reconstruction, is usually a long process - many months - and most often requires more than one surgery. Some women have little discomfort during the reconstruction process but other women find the process to be very difficult - there is no way to know until you are going through it. Are you prepared for this?
• How will you deal with possible complications with reconstruction? Some lucky women breeze through reconstruction but unfortunately, many have complications. These may be short-term and/or fixable or they may be long-term and difficult to fix. Common problems include ripples and indentations and unevenness. You may have lingering side effects (muscle pain, spasms, itching, etc.) on one side or both. If you don't end up with symmetry (symmetry is not a sure thing by any means, even if you have a bilateral mastectomy with reconstruction done on both sides at the same time), will you regret the decision to remove your breasts or your healthy breast? Are you prepared for the possibility of revision surgery?
• How you do feel about your body image and how will this be affected by a mastectomy? A reconstructed breast is not the same as a real breast. Some women love their reconstructed breasts while some women hate them. Most probably fall in-between. Reconstructed breasts usually looks fine in clothing but may not appear natural when naked. They may not feel natural or move naturally, particularly if you have implant reconstruction. If you do choose to have a mastectomy, one option that will help you get a more natural appearance is a nipple sparing mastectomy (NSM). Not all breast surgeons are trained to do NSMs so your surgeon might not present this option to you. Ask your surgeon about it if you are interested and if he/she doesn't do nipple sparing mastectomies, it may be worth the effort to find a surgeon who does do NSMs in order to see if this option is available for you (your DCIS can't be right up near the nipple).
• How do you feel about losing the natural feeling in your breast and your nipple? Are your nipples important to you sexually? A mastectomy will change your body for the rest of your life and you have to be prepared for that. Keep in mind as well that even if you have a nipple sparing mastectomy, except in rare cases (and except with a new untested reconstruction procedure) the most feeling that can be retained in your nipples is about 20% - the nerves that affect 80% of nipple sensation are by necessity cut during the surgery and cannot be reconnected. Any breast/nipple feeling you regain will be surface feeling only (or phantom sensations, which are actually quite common and feel very real); there will be no feeling inside your breast, instead your breast will feel numb. For some, loss of breast/nipple sensation is a small price to pay; for others, it has a huge impact on their lives.
• How will you deal emotionally with the loss of your breast(s)? Some women are glad that their breast(s) is gone because it was the source of the cancer, but others become angry that cancer forced them to lose their breast(s). How do you think you will feel? Don't just consider how you feel now, as you are facing the breast cancer diagnosis, but try to think about how you will feel in a year and in a few years, once this diagnosis, and the fear, is well behind you. Keep in mind as well that most women are pleased with their decision to have a mastectomy or bilateral when it's first done - they are relieved that the cancer is gone and the surgery is over and in most cases it wasn't nearly as bad as they feared. For women who are affected by the loss, the real impact usually doesn't hit until many months or even years later. That's why trying to think ahead to a time when this diagnosis is long behind you is important.
• Will removal of your breast(s) help you move on from having had cancer or will it hamper your ability to move on? Will you feel that the cancer is gone because your breast(s) is gone? Or will the loss of your breast(s) be a constant reminder that you had breast cancer?
• Appearance issues aside, before making this decision you should find out what your doctors estimate your recurrence risk will be if you have a lumpectomy and radiation. Is this risk level one that you can live with or one that scares you? Will you live in constant fear or will you be satisfied that you've reduced your risk sufficiently and not worry about it except when you have your 6 mth or annual screenings? If you will always worry, then having a mastectomy might be a better option for you; many women get peace of mind by having a mastectomy. However you need to know yourself. After a breast cancer diagnosis there is always something to worry about so those who are prone to worry will always find some reason to worry, whether they had a lumpectomy, a mastectomy or a BMX. Be aware too that while a mastectomy may reduce your local (in the breast area) recurrence risk, it doesn't eliminate this risk entirely and it has no impact on your risk of distant recurrence (i.e. mets), should it be found that you do have some invasive cancer. This is why the survival rate is the same whether for those with invasive cancer whether they avhe a lumpectomy with radiation or a mastectomy. BC in the breast is not the problem; it's BC that has moved outside of the breast that is the problem.
• Do you know your risk to get BC in your other (the non-cancer) breast? Is this a risk level that scares you? Or is this a risk level that you can live with? Keep in mind that DCIS cannot recur in the contralateral breast so your current diagnosis doesn't impact your other breast. However, anyone who's been diagnosed with BC one time is at higher risk to be diagnosed again and this may be compounded if you have other risk factors. Do yourself a favor and find out your risk level from your oncologist. When you talk to your oncologist, determine if BRCA genetic testing might be appropriate for you based on your family history of cancer and/or your age and/or your ethnicity (those of Ashkenazi Jewish descent are at higher risk). Those who are BRCA positive are very high risk to get BC and for many women, a positive BRCA test result is a compelling reason to have a bilateral mastectomy. On the other hand, for many women a negative BRCA test result helps with the decision to have a lumpectomy or single mastectomy rather than a bilateral. Talk to your oncologist. Don't assume that you know what your risk is; you may be surprised to find that it's much higher than you think, or much lower than you think (my risk was much less than I would ever have thought).
• How will you feel if you have a lumpectomy or single mastectomy and at some point in the future (maybe in 2 years or maybe in 30 years) you get BC again, either a recurrence in the same breast or a new BC in either breast? Will you regret your decision and wish that you'd had a bilateral mastectomy? Or will you be grateful for the extra time that you had with your breasts, knowing that you made the best decision at the time with the information that you had?
• How will you feel if you have a bilateral mastectomy and no cancer or high risk conditions are found in the other breast? Will you question (either immediately or years in the future) why you made the decision to have the bilateral? Or will you be satisfied that you made the best decision with the information you had?

I hope that this list is helpful. The thing to remember is that everyone's experience with surgery is different, everyone's pro vs. con list is different and everyone's emotions are different. Keep in mind too there is so much in this situation that you can't control..... how your breast looks after a lumpectomy..... how you feel about your breasts after reconstruction..... whether you breeze through radiation or have problems with your skin..... whether you have pain from your mastectomy or reconstruction or not... whether the fears you have now, just after you've been diagnosed, will still be as strong in 6 months or 2 years..., etc.. So it's important to not be swayed based on what someone else did or the experience that someone else had or how someone else felt - because your experience might turn out to be completely different. Make the decision based on knowing yourself. Do what's best for you.

StacyRose,

Have you researched the breast reconstruction options that use your own body tissue rather than implants if you decide to have a mastectomy?

These autologous reconstructions are the DIEP, Tram Flap, latissimus  and other kinds where they can take tissue from almost any part of the body to reconstruct the breast(s). Most of these will allow sensation to the breast.  Of course they are more complicated surgery and you must find a PS that has experience doing that particular type of reconstruction.  From what I have read on this website many women are pleased with the results they obtain from the DIEP surgery.

If you are considering mastectomy and a certain type of reconstruction I would suggest that you post your questions in that particular forum on this website to get answers from the ladies that have had the surgery.

Judy

For whatever it is worth....I have a friend who had BC (not sure if it was DCIS or another) about 10 years ago and did a lumpectomy.   A couple of years ago she had a recurrence/new cancer.  She says now...that she was always waiting for the "other shoe to drop" and wishes she had had a BMX the first time.

One other thing to consider if you do surgery--they'll want to do a sentinal node biopsy. You don't have invasive cancer, so avoid that. the surgeons will say the SNB will lessen your risk for lymphedema, yet there are many, many women who now have LE after their SNBs. Most docs can't limit themselves to just one node in the removal process--they take a clump of 3-5 "just to be sure."

I had a Stage 1 IDC almost 10 years ago, did lumpectomy and rads. I was glad to have my own breasts for 5 more years befoer getting a new primary in the other breast. Then I had the BMX done with recon. And recon is fraught with problems--multiple surgeries, infections, anesthesia risks, etc.

You are at the toughest stage of your process. Take your time to examine your values (Beesie did a great job of laying that out for you!) then decide and don't look back with all the "what if's" or "I shouldda's".

Good luck!

happy new year everyone...I'm waiting for some friends to come over. Beesie I loved your list. Very thouhtful and informative. I'm sure many women will benifit from it. StacyRose....any questions you have please ask. It's a really tough decision. I remember waiting for the previous bx results, it seemed it was always holiday time. That is very stressful. One thing I really liked in Beesie's list was the feeling that having a double mx. will always remind you of your cancer. I am really interested in seeing if my breasts stop being so much a focus to my physical well being. Take all the time you need and I hope you don't have the regrets I do.

I had dcis and a family history.  My reaction with my diagnosis was " I want them both gone"  my Dr said ok, I can do that.  I asked her "am I nuts to want this?"  Her response was "  I wouldn't remove your breasts if it was nuts." 

It was what I needed to do.  I didn't want to wait and see, I didn't want rads to my body if I could avoid it.  That being said I miss my breasts.  But I would still do it again.  Hope this helps...

it is torture, isn't it???? When I was dx, no one ever mentioned mastectomy--I had  lump that was no where near my chest wall- very discrete-and they knew they could get it out with great margins--and they did....I did chemo and radiation-- and I am glad I did what I did..... I now know that I would not have dealt well with a mastectomy-although if there had been medical indications that it was necessary, I would have done it....

 I think the biggest issue here is what you can live with-what will give you peace.  I don't worry at all about recurrence (and it should be noted that people can have recurrences even with mastectomies although it is a small number).  But, if you are someone who will worry, I would imagine a bmx would give you some peace.  

It is really hard to imagine how you will feel--but one option would be to have the lumpectomy, get the pathology then figure out if a bmx is for you--- gives you a little breathing room...... I never understood why  people whould have a lumpectomy then have a mastectomy anyway---now I do.... during this diagnostic phase, we need as much breathing and learning room as we can get.... you can always have the mastectomy--- but you can never put them back, if you know what I mean.

this is one of those gut decisions, that when you finally make it, you will know you are right....

keep us posted--best of luck   We really do "get it"

Re this: "And, initially the surgeon told me that the recurrence rate with lumpectomy and radiation tends to increase by 1% per year ... "

I was told a somewhat similar thing--that with lumpectomy and IORT, my 10-year risk of recurrence would be about 4% while my 20-year risk of recurrence would be 8-10%.

Then it was explained that this is just arithmetic--if you have, for example, a 1% chance of a recurrence in any given year, once 20 years have passed, that adds up to a 20% recurrence risk over that 20-year period, which does make sense.

It doesn't at all mean that risk of recurrence goes up after five years. Indeed, it goes down, but if you add all those teeny percentages up over the years, that's how you end up with the higher number.

Linda

Hi StacyRose,

I had a 6 cm DCIS+ a small area of microinvasion removed by lumpectomy this summer.  I also had a re-excision after that where they removed more tissue, but I don't know how much.  It was on right breast at 9 or 10 o'clock.  Anyway, I was worried about how it would look with losing such a large chunk.  It looks different than the other one--the nipple is a little higher, the breast a little smaller--but no one would notice unless they were really looking.  I had seven weeks of radiation which I hated every day, but it's over now.

Edited to add: Anoym, about the anti-depressants...I've been taking Effexor and haven't gained weight.  I've been on it about three months. 

I second guessed for a while, but I'm happy with my decision too.  I like having my breasts.  I know I will have to be vigilant about follow-up but my doctors are on top of the situation.  I'm not really that worried about it.  I like that they are following up with me.  And I'm a worrier by nature, so for me to say that is kind of big.  Anyway, I thought you might want to hear another lumpectomy story.   

Anoym--I think alot of people end up on antidepressants for various reasons.  Antidepressants are not just for depression anymore.  I was subscribed one for pain and they found the 'side effect' of the antidepression med was that it helped nerve pain...I have been taking them for over 5 years.

Effexor is said to help with hot flash symptoms.  Even though I suffer daily with hot flashes (I had to go off hormone replacement therapy due to being ER+/PR+) I chose not to add Effexor to my daily medicines.

I actually lost weight on antidepressants (about 10 lbs) because

1. I feel better and therefore am more active

2. I find I am not as hungry.

3. I find that I have more interest in everything.  I feel like 'before' my life view was black and white.  After being on my antidepressive, my life is in full technicolor again. I just feel better!

I would weigh the odds (no pun intended :-) and don't go into taking the antidepressants lightly.  Once on them, they can find one that works for you, but if you decide they are not working or what you want, you have to safely wean yourself off and not just stop taking them abruptly.  Some people find they need a little help when dealing with a traumatic event (I think BC would qualify!) and then go off of them...some just stay on them because they just work for them.

Talk to your doctor about all the various ones out there and make a good informed decision.

Don't let a little weight get in your way of loving who you are --

 we get one life to live..love it..

live it :-)