Questions for those who have considered prophylactic mastectomy

Hi Everyone,

I went to MD Anderson last week and met with genetics counselor, their psychiatrist, oncologist surgeon and one of their plastic surgeons.  I'm scheduled for PBM mid November.  I will probably do the nipple and skin sparing PBM with immediate start of implant reconstruction. I'm not looking forward to it but I feel really great about my decision.  No offense to men but I'm glad I have really wonderful female doctors.  I'm starting to feel safe again having made the decision to do PBM after the rug was pulled out from under me back in Jan. 08.  Since my mother died from breast cancer when she was 56 I felt like yearly mammograms were all encompassing.  After having a good mammogram and being told I wasn't needed back for another year I decided to just do a breast MRI (after a younger sister was diagnosed with ovarian cancer) 5 mos after the July mammogram.  All those years I thought I was safe only to find out by a chance MRI that I had four different cells that could lead to four different kinds of breast cancer- what a SHOCK.  Make no mistake I have blessed by the grace of God that they are all still contained and I only have to do PBM.  I thank God I do not have to do that and radiation and chemotherapy.  Sorry I went on and on.

Hope- you go girl! Maybe your husband can help decide how big you go when you do reconstruction haha!

Lois

Hi Anne,

I had couple of places with ADH along with papilomatosis (sp?) removed in a lumpectomy.  The pathology from that showed the LCIS.  I also have numerous microcalcifications in both breasts.  I'm just not waiting for the 2nd act.  I shutter to think what would have happened if I had waited the full year to do the next mammogram.   The only thing the mammograms found were microcalcifications.  It seems obvious to me that in my case I would need too close of monitoring for my liking along with them saying that if it becomes cancer they usually catch it early.  How about we not catch it at all because it isn't there.  Sorry to be so crass but I have watched four of my immediate family members be diagnosed with cancer and undergo radiation, chemotherapy and then two of them dying anyway.  I'm not really mad or anything I just feel blessed to be able to make a choice before I don't have one.

Lois

Hi Crisly1,

I'm here if you need me.  I definitely support whatever decision you make and toally understand where you are in the decision making process.  Keep me posted on what you decide to do. I have my prophylactic bilateral mastectomy on Nov. 18 with immediate reconstruction with expanders.  I'm excited to get it done but wish it was behind me.

Lois

Hello again to everyone on this thread!

I have met with 3 surgeons to get different opinions.  I will meet with a PS next week.  I will probably have the BPM around the same time you will, Lois.  

I am not sure what kind of reconstruction I will have yet; implants, nipple sparing or tram/flap.  Depends on the PS I guess. The surgeon I will probaby use tells me its done in a 5 hour procedure after he finishes and the PS takes over. My oncologist tells me to go flat but I am not ready for that. 

Anything I should make sure to ask? 

Lois and others-  I was praying for some more insight as to what I should do about my LCIS and then I found this site--What an encouragement! .  I was diagnosed this last July with 2 instances of LCIS in the left breast after I had 2 biopsies on some calcifications that were in a swirled pattern.  The calcifications were benign but the tissue around them had LCIS.  In 1985 (23 years ago when I was 32), I was diagnosed with infiltrating intraductal breast cancer on the right side.  As you can imagine, I had an immediate mastectomy.  The pathology report revealed 3 positive nodes, one of which was considered rather large, like the original lump.  I had chemo and radiation and eleven months later I underwent reconstruction.  Then in 1995 I had this reconstruction redone (going from a silicone implant to a saline one) because this "old style" silicone implant had become very hard due to excess scar tissue.  Now that doctors have found LCIS on the other side in 2 spots, I am seriously considering a prophylactic mastectomy.  I have actually seen 2 plastic surgeons and a breast surgeon as well as my oncologist and the doctor who read my digital mammogram.  Half of the doctors think a prophylactic mastectomy is the wisest choice and the other half think it would not be a bad idea to wait.  They tell me that monitoring is 80-90 % effective and that if I go on tamoxifen I will cut my chances of getting a new breast cancer in half.  These doctors say that I should not make a hasty decision.  I have a tight work schedule and only certain periods of time might work for me to take 2 weeks off to do a surgery.  I was considering scheduling the PM for mid-November.  I was thinking of having an expander put in at the time of surgery.  I actually may have my other reconstruction done a third time and thus have  2 expanders put in if I do the mastectomy.  Then I would get the implants four months down the road and nipple reconstruction on the left side in a couple of months.  (The doctors, by the way, did not give me the option of nipple-saving surgery.  I wonder why some of the doctors will agree to do this.)  In any case, I am having a hard time making a decision. 

I wonder if I should try the tamoxifen and monitoring for a year.  I am concerned that the Tamoxifen might affect my sleep.  I already struggle with insomnia.  The circulation in my feet and legs is not great so I wonder if that might make it worse.  I am also concerned about the risk to the uterus. 

I am also concerned that the monitoring seems like it will only catch something once it has become cancer.  As far as I understand it, the only way that the increased growth of LCIS  can be detected is through biopsies.  Mammograms and MRIs will probably only show something when it has already become serious and will probably require further treatment.  I do not want to do chemo and radiation again.  This is a hard decision.  My first mastectomy was so clear cut.  My surgeon tells me it all boils down to whether or not I can live with the risk or not.  If I thought the monitoring could give me some preliminary signs that the LCIS was becoming more serious, that might help some.  I would think that my previous cancer would make it more likely for me to have another one.  My husband, by the way, is supportive of the surgery.  One of my friends is encouraging me to have the surgery. This is because she had lobular cancer in one breast and the MRI & mammogram showed nothing in the other breast but when she went ahead and had a prophylactic mastectomy of this supposedly clear side, the pathology report showed lobular cancer was there too.  I am just not sure how good the monitoring is.  Any comments you might have about all these concerns would be helpful.  Thanks so much!

Margaret

Margaret,

Just saw your post and thought I'd let you know that my cancer was found after a prophylactic mastectomy.  It was small, but had not shown up on a mammogram except as micro calcifications.  In fact, nothing has ever really shown up on a mammogram for me (dense tissue).  I found the LCIS because it felt "ropy" - and the subsequent biopsy revealed what it was.  I found a lump years ago that was benign but didn't show on the mammograms.   As for me, the Tamoxifen and close monitoring lasted three years before I decided I was done with the constant surveillance and the side effects of the drug.  My doctor was thrilled that I had the surgery, especially after he got the call from the lab saying they found a cancer.  He as supportive of the surveillance, but I think he sees a lot of sad cancer stories and now I won't be one of them.

By the way, my cancer was found in the "healthy" breast - not the one with LCIS.  Weird huh?  The doctor reminded me LCIS is a bilateral disease and increases the risk equally in both sides.   

Psalmist,

Thanks for taking the time to respond.  Your experience confirms a lot of what I am feeling.  It seems like mammograms and even MRIs and ultrasounds are very imperfect means of surveillance.  Back when I was 32 and had my initial mastectomy, none of my tumors or positive nodes showed up on any of the tests.  That was my first experience with monitoring letting me down.  My breasts were very dense then but I understand that my remaining breast is still pretty dense so even with the improved digital mammography, monitoring may not be as effective as I would like it to be.  My surgeon tries to tell me that the monitoring works for many women, but I hear so many examples of cancers that went undetected like yours was.  Lois' story about her mother-in-law is one of those examples.  It is hard for me to trust the monitoring.  By the way, you say that you were on tamoxifen.  What kind of side effects did you experience?  Thanks again for your help.

Margaret

Psalmist,

Thank you for your feedback on the Tamoxifen and the story you shared about the woman in your company whose breast cancer did not show up on the mammograms.  Do you know if they used regular or digital mammography on her?

I wondered if you might be able to answer some basic questions.  How long were you in the hospital for the prophylactic mastectomy?  How much work did you miss?  Did you have the expander put in at the time of the surgery?  How long did it take before you could drive, vacuum and lift?  Given that the doctors found a small cancer in one of your breasts, did you have to have any lymph nodes removed?  Did the finding of this cancer change your reconstruction plans?  Will you need to undergo radiation?   Are you doing nipple reconstruction?  If so, will they take a skin graft from your abdomen?  Have you worn any kind of prosthesis with your expanders to look better for work?  My plastic surgeon says to wear baggy sweaters but I think I can do better than that.  When I had my first mastectomy and reconstruction, I used the Reach to Recovery bra with the polyester fluff "prothesis" but it rode up all the time because it had no weight. 

By the way, I have scheduled surgery for Nov. 12th.  Thanks again for your input.  God bless you as you continue the reconstruction process.

Margaret

You may want to check in the DCIS forum - you will get more eyeballs that know more about DCIS there.  From what I understand, cancer is not  a 'line in the sand'.  I think it is commonly thought that the path from normal cells to cancerous cells is usually made up of many small steps.  So different people can have different opinions when a cell 'turns cancerous'.  Its like if you are heating water, when do you say it is hot?

There is not any controversy about the extreme situations (normal vs very cancerous), however. 

Psalmist,

Thank you so much for taking the time to give specific answers to all my questions.  Your information is very helpful.  I want to be able to give my supervisor at work a reasonable estimate of the time I will need to take off.  It sounds like your reconstruction is advancing well.  I will try to find some sort of lightweight prosthesis to wear before the expansion process begins.  Thanks especially for your prayers.  They are much appreciated.

Blessings,

Sunflower

Hi there - I have an update as well. I saw my oncologist in late September and he strongly suggested a PBM for me as well. As he said, I am a hard read - the chances of missing a cancer are very high. And most likely I will end up w/ a mastectomy by the time I reach 60 anyhow. By doing the surgery now I can choose the time and place and have reconstruction and move on. I am pretty certain I am going to follow his suggestion. I have chosen my surgeon and my PS and my method of reconstruction. My husband and family are supportive. I will let you know how it turns out. Good luck to every other woman out there dealing w/ these choices! - Jean

Well, I am still moving forward. My oncologist strongly suggests a PBM for all the reasons listed above including very dense, lumpy/bumpy and changing breasts that have been getting more and more worrisome over the years, and a strong family history of cancer. Actually, he seems concerned that there is already something more serious than LCIS going on that we can't see. I have selected my PS and my surgeon, and I have selected my method of reconstruction. I was going to wait until February for the surgery, but I am finding that the waiting is driving me crazy. It is all I can focus on. Time for me to take care of the problem and move on. Most likely I will be scheduled for the first week of December. I plan to take 8 weeks off work and really give myself time to heal. I am scared, mostly because everyone tells me that it is tough to lose your breasts. Generally I am a pretty intellectual woman who can "bucket" problems, so hopefully it won't be as bad emotionally as I am afraid it will. Did others find that it took them for a loop emotionally or were you able to move on and get past the situation? Anyone else looking at surgery in early December? I don't feel brave, just realistic. - Jean

Hi Mykidsmom and Lois,

I had BPM in June for LCIS and dense difficult breasts.  They found ADH on the "good side", so I was even more relieved.  The pain from surgery really wasn't that bad for me.  The pain relievers helped a great deal.  I also had an On-Q bag that irrigates the site with local anesthetic for a couple of days.  I'm finished with the expansion process and will have the exchange surgery in November.  The pain I experience during the expansion was my own fault.  Most of the posts on the board at the time said it didn't hurt much at all, so when I hurt a lot while getting 60cc weekly, I thought I should just suck it up.  After 3 fills, I slowed down to 45 cc, and felt much better.  I would take prescription pain relief the day of fills, and ibuprofen at work the next day.

It is all very doable.  While everyone is different, there are enough ladies on this board to help you with their experiences with each step.  I read about others experiencing anxiety every 6 months as they closely monitor their LCIS, and I am convinced that for me PBM was the best choice.

I really had no sense of loss about my breasts.  As I see it, they had turned on me and had to be replaced.  Feel free to PM me.

Good luck to all.

Carol(AZ)

Carol - I ditto Lois' note, thanks so much for the confirmation of our choice and the matter of fact statements regarding the procedure. I have the feeling that I will be MUCH more settled when this is behind me. Hopefully I will be on the schedule by early December.

Lois - The recommendation from my oncologist and PS is not to do nipple sparing surgery. As they said, why go through all this just to retain a risk, even though small.

Good luck to all. Thanks for the information and support! - Jean

Jean & Carol,

Stay in touch so we can have a good support group.

Lois