LCIS and Prophylactic Mastectomy

62192

i agree with Kimber. I do not want cancer to make the decision for me, especially if I can help it. As I mentioned earlier, since I had an elective breast reduction I am feeling the need to enjoy these boobs for awhile, UNLESS something changes that. Since I am not quite ready for a PBM, I don't want to have regrets of making the decision to not go on tomox. Going on it i think would stress me out more than anything. I am 48 years old, have had very dense breasts ( not as bad now since i had so much tissue removed with reduction) and have no family history. I also am a mom of 3 kids,ages 14 and under. You know the first few months after my reduction and hearing that i had LCIS, I was a wreck worrying about what to do. My first thought was always "have the PBM". Oncologists that i saw, said I am going "over the top".I have seen some great Dr's here in California (Stanford)too. The breast surgeon that i saw was much more in favor of it. But then I really relaxed over it, kept a close eye on it but didn't worry nearly as much. Now the last month or os i have been thinking more about it. I just had a mammo last month and all was clear, I guess it is something we always will think about sometimes it will be easier and some harder.

Kimber

62192,

Tamoxifen is not bad at all, at least not for me.  It has also made my boobs less dense, although they are still pretty dense. The only other thing I notice is my period stopped.  I do not have hot flashes or any of the other stuff. My oncologist says it will make them less and less dense over time.  My plan for the new year is to lose 10 lbs and hopefully that will also help.  When I gain weight, I gain it in my boobs!  Great for some, but not me.....     Congrats on the clear mammo!

Kimber 

Stonebrook108

Hi all,

As the time gets closer I still can't believe I'm having PBM surgery on 1/9.

These last 2 months have been a blur. When I read what everyone else has gone thru with chemo. and rads. I know I'm making the right choice for me. I just want to get it over with.

Thank you all for your stories and advice.

Ann

Kimber

Ann,

I am very interested in how you are doing and how your recovery goes - please keep me in the loop!

My best to you!!  (((((hugs))))) 

Kimber 

2new1s

Stonebrook108,

Please keep us posted as how you are doing after your surgery.  I am currently waiting to schedule my PBM.  Hopefully it will be soon.  The waiting is just leading to more worrying!

Mykidsmom

Ann - I had my PBM w/ placement of tissue expanders on Decemer 16 for my dx of LCIS. I can tell you that the procedure is not as bad as the deciding and waiting and worrying. I am almost three weeks out and feeling pretty good. There are some good threads on what to pack and prepare before surgery. THe primary thing is that you can't use your arms for quite a while after surgery, so make sure you have help. Take care and feel free to PM me if you have any specific questions. It may help to know that I have not had one moment of regret. I am so glad to be past my bc worries. Now my risk is less than the general population, I can take them odds. - Jean

Stonebrook108

Jean-Glad to hear your doing well and that you have no regrets. I hope I have as good a outcome as you. My surgery is Fri 1/9. I'll keep you posted.

Ann

Joanie207

Ann,

I wish you the best with your surgery on Friday. I was diagnosed with LCIS, ADH and ALH in November 08. I am still on the rollercoaster about what to do. One minute I think PBM is the way, then I think I will wait and watch. I really don't want to go the Tamoxifen route. My biggest issue right now is reconstruction. I want it, but have yet to find someone who does breast reconstruction full-time and not as a side to more cosmetic plastic surgery. We live in Maine and most likely I will have to travel to have this done. How did you make your decision? I, too, would like to have all of this behind me. 

Stonebrook108

Hi Chinamom,

I made my decision knowing that I couldn't deal with having to be scared evry 6 mons waiting for test results. I remember how I felt and don't want that feeling again. But, I'm still scared of having surgery. Here is the web page of my PS www.BreastReconstruction.org

My Dr is Dr.Ron Israeli.He is doing direct implants not expanders. His pratice is breast reconstruction. . Good luck

Ann

Joanie207

Wow, what an informative website. I've printed just about everything off regarding the different types of reconstruction. I probably would move alot faster with a PBM if we had a surgical practice like that around here. It appears that you are in very good hands!!

I wish you the very best on Friday and leading up to Friday. It has to be tough. I know I will walk that path in the future and I truly feel for you. Please let us know how you are doing. 

stitches

I also was diagnosed in Nov. after lumpectomy showed cancer (my second go-round with BC) and I opted to have bilateral with no recon - was done 12-18.  Surgery went well and drains came out after one week.  Through these posts I learned so much (like to take a pain pill before post-op surgeon appointment, because that makes drain removal (which only takes a few seconds) more comfortable.  Recuperation has gone better than expected and pain manageable.  The waiting is the worst - just nice to finally have the surgery behind you and move on )  I will be thinking of you on Friday.  Stitches

Joanie207

Stitches,

Thank you for your post. I am so glad to hear that this is behind you. Do you mind if I ask how you decided to go without reconstruction? I have a wonderful breast surgeon here in town, but no good plastic surgeons (or at least ones I would trust to do the job right the first time). One option I have (if I decide to move forward with PBM) is delayed reconstruction. Then I could choose who would do that reconstruction later and wouldn't be locked into the local docs. Years ago when my mother had a mastectomy she did not have reconstruction. I am told it is quite different today. I guess I have not given any real thought to that option and any input/advice/websites would be very helpful.  Thanks.

Stonebrook108

Chinamom,

I will give you the name of my breast surgeon who recommended my PS. if you decide you want to come to NY for surgery. email me at Stonebrook108@aol.com

Ann

Stonebrook108

I'm having my surgery tomorrow, fri 1/9  bil-mastectomy. I will keep all of you posted as to how I made out soon as I get home. Thank you all for your advice and well wishes
Ann

leaf

Best wishes for you!

firstmate

I have a family history of mother, grandmother and aunt with breast cancer. I had fibrocyctic breast disease with "too many cysts to count" according to the radiologist.  Over the years I had 4  breast biopsies, and multiple cyst aspirations.  In Jan 2008, my mammogram showed a large area of increasing calcifications in L breast.  I was diagnosed with DCIS by stereotactic breast biopsy.  Surgeon, two radiologists, and plastic surgeon all recomended a bil mastectomy (prophylactic on the unaffected R side).   After extensive research and internal struggles, I had a bil mastectomy in March 08.  The pathology report showed no residual DCIS, but prominent foci of LCIS on L breast and prominent scattered intraductal calcifications on R breast with sclerosing of the lobules.   So, was I premature in having a mastectomy or would I be going through multiple biopsies every year to rule out cancer?  Plus taking tamoxifen or having radiation?  I am still struggling with my decision.  I had expanders with the surgery in March 08, implants in Sept 08 and a revision 11/08 for a L capsulotomy.   I am still not happy with the appearance of the breasts, even though the prophylactic R side looks much better than the L side (simple mastectomy).  The L side still feels quite tight and deformed, but the R side (prophylactic) side feels fine and looks OK (not great).  I am trying to make a decision about further revision surgery and/or nipple reconstruction.

It is a hard decision to make and I hope that whatever decision you make works out for you.

Good luck!

Peaches70

I haven't posted much in a long time. I was dx with first ALH, then LCIS on my second and third biopsy, and received the news much as most of us have. Since then, I have had one more biopsy, and I was fully prepared to go the BPM route the next summer. Then...I had my next six month mammo and MRI. They were negative, and I was told I could wait a year for more tests. I put the surgery on hold for this and other reasons. My feeling now is that if there is another call for a biopsy, I will probably put the surgery back on the table. However, as long as things continue like this, I may not go for it. I am currently in my second year of Evista, but only take it every 3rd day, due to the extreme hot flashes.

My feelings about this whole thing have really gone through many changes. I was not only concerned about the risk, but also about the monitoring and the possibility of more and more biopsies. I saw my breasts being chipped away piece by piece and hated it. The pain from lying on the stereotactic table was another factor. But I do feel that time has eased my fear somewhat. Not that I'm not concerned, but I think that I was much more driven by the fear early on. Of course, there is always the possibility that I have blinders on right now. But I'm taking it one step at a time. We'll see what happens in February.

leaf

Good to hear from you Peaches! 

My feelings have been all over the place with this too.  I was very afraid at first, and it didn't help with all the additional monitoring they were doing (imaging +/- biopsy every 3-6 months for the first year or two.)(They probably are concerned with missing some DCIS or invasive that may have been there before the LCIS diagnosis.)

Then, eventually (at least at my place), they slow down on the monitoring. (I'm on annual imaging and biannual clinical exam.)

Knowledge is power.  There may be little certainty with LCIS, but they do know more now than they did 20 years ago.

Anonymous

Peaches---I'm very fortunate I haven't had to have any more biospies since my  initial diagnosis of LCIS (by core and then wide excisional) in Sept 2003. Aside from a few little scares from MRI findings that were felt to be benign, all has been well with mammos, US, and breast exams. While it is stressful for me at test time, the close monitoring does give me a better sense of security and comfort, if that is possible with this diagnosis! So for the time being, I will keep up with the alternating mammos and MRIs every 6 months and will be starting on the Evista soon for further preventative measures and hope I tolerate it as well as I did the tamox.

Anne

Stonebrook108

Hi Girls,

I had my surgery on Fri.1/9 and did well. No cancer  in the nodes they removed Thank God!

I was able to come home the next day. Not as painful as I thought it would be. I have some pain from the drain sites cause of the stiches. I do feel weak so I will keep this short and sweet.

Thanks for all the good wishes.

Ann

lopalermo

Ann,

Congrats on the good news.  It only gets better from here.  My prayers are with you.

Lois 

Mykidsmom

Ann (Stonebrook108)- Wow - I am so pleased that yoru surgery is behind you! And w/ the immediate implants you don't even have to do the tissue exapansion step. That is so cool. Did they also do nipple sparing, if so, then I am definitely jealous! Just kidding. I wish nothing but the best for my friends on this forum. You all deserve the very best possible results every step of the way. Good luck w/ your healing and keep in touch. PM me if you have nay questions. - Jean

Stonebrook108

Jean,

The Dr's wouldn't do nipple sparing because of the LCIS. So I'll have nipple reconstruction in a few months. I'm surprised that I feel as well as I do. It's the drains that are a pain and they sting under my armpits where they go in. I go to the PS on Tues. and hope maybe they'll take out a couple of the drains. I hope that your feeling well and that your healing is going as well as mine.

Ann

Kimber

Ann,  I am so glad you are doing so well!  Please keep us posted!!

My best,

Kimber 

Mykidsmom

Ann - My PS and surgeon and oncologist told me the exact same thing - no nipple sparing for me either!

I am totally w/ you on the drains. I had my drains taken out on day 8 and that was more than enough for me. I am actually doing pretty well these days. I am finally sleeping on my side w/ three pillows. Seems like I can almost find my dh on the other side of the bed now (as opposed to six or seven pillows). And I am walking about three miles a day. So I am moving along. I lost my job the day before my surgery (long story), so that's my next hurdle - finding a new job. Today my youngest goes back to college. I am a bit down since he has been a great companion while I have been recovering. Ah well, there is always the dog and the cat! Take care. - Jean

Stonebrook108

Jean,

I went to the PS today and thought maybe they would take out 2 drains but, they said it was too soon. Surgery was only on 1/9. So, I have to go back on Thurs. At least now I can shower. The nurse made me a "necklace" for the drains to hang from.Did the drains hurt much when they come out? I was told to take a percocet before todays appointment in case they took them out.

I feel really good. We went out to lunch, drug store then come home. That was enough for today.

I'm still glad that I had the bil. mastectomy. It's not right decision for everyone but it was for me.

Hope you continue to feel better.

Regards,

Ann

Mykidsmom

Ann - Getting the drains out was not a problem for me. I was so PSYCHED to have them come out that I didn't really notice the odd feeling. Just take a deep breath and then they are out - just like that. My PS also snipped the stitches, so that was a little uncomfortable, but not too bad. That being said, at your stage in the game, I would suggest a pain med first. Especially since my PS did a fill at the same appointment. My first fill was the only one that really bothered me. I have had three altogether and now I am done. These girls seem gigantic to me, and one is a little under my arm, but so far it has all been doable. I started to be able to sleep on my side around 3 1/2 weeks (with LOTS of pillows) and that has been the best change! I am so glad that you can take a shower. Makes all the difference in the world, doesn't it. Keep getting better. - Jean

firstmate

I had drains in for 4 weeks - felt like FOREVER.  I kept having fluid accumulation on the prophylactic side.  Go figure!   I was so happy when the PS took the drains out, that I don't remember it hurting at all.   I couldn't sleep on my side at all until the expanders were exchanged for implants.  It is so much more comfortable when the implants are inserted.

Good luck!

Stonebrook108

Today I had 2 drains removed and it didn't even hurt. Just a strange feeling. I think because I'm so numb from the surgery that's one reason it didn't hurt. I have 2 more drains to go maybe on Monday.

Can anyone tell me how long they felt numb across their breasts? How long was it before you had any feeling start to come back? It feels like I'm wearing a bullet proof vest.

Ann

firstmate

Mine are still very numb and I had the mastectomy in March.  Some feeling returned, because I could feel the needle on the last few expansions in August.