How do you decide?

Joanie207

First, I am lucky. I do not have invasive breast cancer. I have LCIS - lobular carcinoma in situ as well as ADH and ALH. I have time to make my decision regarding treatment with tamoxifen or bilateral mastectomy. I know I don't want tamoxifen, but how do I actually decide what to do regarding surgery? Everyone says that I have time to decide, but how will I know when? And how do I figure out what type of reconstruction to have. The flap procedures scare me, but I like the idea of being done with it. Any insight on how other in the high risk category have made their decisions would be greatly appreciated.

Kimber

China Mom,

Why do you not want to try tamoxifen?  Just curious.  I felt that way at first, but then decided to give it a try and have done really, really well.  It'll be a year Feb. 20.  Since my diagnosis I have had another suspicious MRI and biopsy, and if I have to go through any more, then I will seriously consider PBM, but I wanted to try the tamox first.  You can always stop it, and it is a little insurance policy while you are trying to reach your decision.

Just my two cents..... My best to you!

Kimber 

Joanie207

That's a good question. I have figured that since my sister and my aunt had trouble with tamoxifen that I would too. I just wanted to avoid that. Mostly I am afraid of feeling like every new ache or pain would be related to the drug. Kind of waiting for the blood clot, the new cancer, etc. This is probably pretty silly, but that's where I am. I have given thought to waiting to do the bpm until after another biopsy. I am hoping I won't need another one and everything stays at bay, but thinking that maybe that would be the deciding factor on pbm.

Anonymous

chinamom---I was diagnosed with LCIS  in Sept 2003 and just recently finished up my full 5 years of tamoxifen, fortunately with relatively minor SEs, mainly hot flashes. The thing is every medication has SEs, but that doesn't mean you are going to get them (even if your sister and aunt did)--the serious SEs from tamox (blood clots and endometrial cancer) are extremely rare, reportedly less than 1%. (and major surgery (BPMs) has SEs of it's own.) You could always try it and see how you tolerate it. I also do high risk surveillance--digital mammos alternating every 6 months with MRI, US as needed.  and breast exams every 6 months on the opposite schedule, so I am "seen" by some method essentially every 3 months. Fortunately, I haven't had to have any more biopsies (despite some "spots" seen on MRI); if I do, then I would consider PBMs, but for now everything is fine. My mom did very well on tamox too (is now a survivor of ILC over 22 years without a recurrence) so that factored into my decision as well.

Anne

Kimber

China Mom,

I have to admit that when I first started tamox, I felt achey and "flu-like" but it was tolerable and went away within a month or so.  I have read posts from women on these boards who said they would rather do another year of chemo than take tamoxifen!!  WOW!   My time on tamox has been so easy and I fear chemo SO much, I cannot imagine that!  But everyone is different! The only other side effect I have is no period, and my boobs are definitely less dense....

I hear you, though.  Any more biopsies and I think I will have to say goodbye to the girls.... 

Stonebrook108

China Mom,

I too had found out in Nov 08 that I had LCIS. I was giving the same choices as you.

The thought of every 6mos. going through all the tests and waiting for the results for too much for me. I was so stressed out and I couldn't sleep. So, on 1/9/09 I had a bil mastectomy with direct implants not tissue expanders. The BS did skin sparring that's why I could have implants.

I feel fine and the drains are out. They were the worst part of the whole surgery.

I had no pain just soreness, tightness, and I do have numbness. And I now have peace of mind that I won't have to play the wait and see game in the future. But, my choice isn't for everyone.

Worst decision I ever had to make. My risk of getting cancer was as high as 65 to 85 percent. Now it's 1 to 10 percent. All my friends told me they would have made the same choice. Not to have to face breast cancer in the future is huge.

Good luck

Ann

Joanie207

Ann, did you have a flap procedure? I am meeting with my breast surgeon on 2/6 and will talk about my options again. This time I will get more specifics from her regarding the local plastic surgeons. I would love to bury my head in the sand, but denial just isn't something I am very good at. I am thinking that I will most likely have a PBM in the fall. I want to enjoy my summer at the lake first. Plus I need to find a team of docs I am confident in. 

We are lucky with 'only" LCIS, but there probably aren't very many diseases where the patient has to make such major decisions regarding their treatment. I admire all of you who have chosen your paths and are willing to share your experiences with those of us just starting. 

Stonebrook108

ChinaMom,

No, I didn't have a flap procedure. I'm too thin for that. Even if I wasn't I wouldn't because I hear it's

very painful and long recovery. Some women want that because you get a tummy tuck and use your own tissue. My Dr. put in implants so I don't have to have another surgery.

I had my surgery 2 weeks ago and really feel good not great yet but getting there. If I had the other surgery I know I would not be feeling this way.

Feel free to email me at Stonebrook108@aol.com 

Be well,

Ann

Wilson4891

I was given the same choices and started the Tamoxifen the first of Jan. So far I am not seeing a lot of side effects.  A little more tired than usual but I could easily account that to the stress.  Just curios what side effects your family members had.  I was opting for the bil mastectomy until I spoke with the oncologist and he explained how small the chances for a blood clot or uterine cancer were.  I was birth control pills for 20+ yrs. He said the risk for blood clot is not any greater than being on the pill. However if I travel on long flights or about to have surgery I should stop it until I was mobile again.  I travel to Africa on mission trips. He said to stop it before the trip and stay off it while I was there. Just to start back when I returned.  He said it would not affect the benefits and I would not have any side effects of going on and off it this way. Just curious that if you did have side effects and it does offer benefits as he said why not give it a chance? If you have side effects then stop it at that time. A little benefit is better than none. 

Daudine

Did you guys chose the type of surgery you got?!

My PS decided to go with inflatable implants. I had no choice.

Maybe in Canad it is different becuase health insurance pays!?!?!?!?

Just curious!