LCIS Diagnosis--What Do I do next?

Hi psalmist!  Thank you for your honest reply.  I needed to know about the sensation thing although I did read someone's post where they had some sensation in their nipples.  Why would you spare them if there's no sensation left?  As far as the cost thing, we have one insurance, so I know we'll have the deductable to pay but it's the 20 percent after that up to whatever (need to check on that again) plus if it does go over into another year medically, we have to pay the deductable all over again.  I know, it shouldn't be a big worry, but honestly, it is.  Thank you for your honesty about having to adjust to the new "girls".  I have visited a few sites to see what reconstruction looks like.  The ladies all say they are pleased, but I'm seeing north/south nipples, etc.  I know they are happy because they no longer have to worry very much about cancer, but to me in this day and age, I'm thinking we could do better.  If that makes me sound bad, I'm sorry, but I have to be honest with myself these days to bear this.  Thank you so for your time and your prayers.  We can all use those and you'll be in mine as well. 

One option is to get another opinion at a Major Institution.  You may have to pay for it out of pocket.

Tabby and Tara - I second all that the ladies have said. To answer the question about nipple sparing, the reason some ladies opt to do this is because the final result is much more natural. Unfortunately, there will be little or no sensation even w/ nipple sparing. Good  luck w/ your decisions. I know it is a tough time for both of you.

As for me, I am feeling very well these days (3 months post surgery). My exchange is mid-April and I see my PS this week to determine the size and type of implant. Thanks for asking!

Take care everyone! - Jean

tabby, Hi. Yes I can't believe it either, the trouble I'm having getting someone to do a biopsy, since mastectomy was recommended.  I live in Ohio. I'm confused and don't know that I can make the right decision. Any thoughts are appreciated. Good luck to you. 

Tabby,

Not all reconstruction involves tissue expanders and exchanges.  Those procedures that use your own tissue to build the breast mound (eg Tram flap and DIEP) seem to require one major surgery and possibly a minor nipple recon.

Taraleec,

I'd really try to get a biopsy first.  That way if you are "only" dealing with LCIS, you can wait until your custody is settled and plan surgery to maximize using your insurance's deductible.  I added up what my insurance paid for bilateral prophylactic mastectomy with tissue expanders and exchange surgery.  It came to more than 100K.

Good luck to both of you.

Carol(AZ)

Nala - I had the MRI guided bx - that was the only way they could bx the areas of enhancement seen on the MRI. Best wishes my dear.  - Jean

Anne - I have a friend who had a BM due to ILC and has a low oncotype test. Therefore she does not need chemo or radiation. However, her oncologist strongly suggests tamoxofin. She would love to talk to someone that has been successful w/ tamoxofin and associated SE's. She does not come to this web site. Would you mind if I gave her your email address? I am so glad that your MRI was clear!! Take care!! Hugs. - Jean

I had my first MRI and it came back clear. I just had my first visit with the oncologist and was hoping to start on tamoxifen. The oncologist does not want to put me on it since I have diabetes and she said the risks are too high for blood clots and since I am in good shape and take care of myself she would hate for a complication from the tamoxifen to effect my health. She said if I should get cancer they would re evaluate the situation and see if it is worth the risks. She agrees with the surgeon and they want to go back in and remove more and do an excisional biopsy since it is pleomorphic. They said they did a study at the Cleveland Clinic on patients with pleomorphic LCIS and only one person had not gotten cancer in that area. All the other people had gotten cancer in that area. They kind of make it sound like pleomorphic is centralized to that area. This disease really confuses me. The oncologists said they want to do an excisional biopsy to make sure there isn't any cancer and I said well what about my other breast and she said well that would have shown up on the MRI. I left there and thought if it would show up on the MRI for the one breast why wouldn't it show up on the other one? I am upset about the tamoxifen because that was like a life jacket to increase my chances of not getting breast cancer and now I don't have the option of a life jacket. The only good thing about that is the decision is made for me so that is one decision that I don't have to make. It was also good getting the oncologists opinion since she is not a surgeon and for her to say that she would definitely have the excisional biopsy does help. I did get a second opinion from another surgeon who had said don't remove it since it is probably in the other breast. So you can see why I am so confused. I am scared that if I have the excisional biopsy I will wake up from surgery and be deformed and regret doing it. They can't tell me how much they will remove. The surgeon said she didn't think it would be noticible but no guarantees. She also has a background in plastic surgery and said she can manipulate the breast to make it look pretty unnoticable. She did a great job on the last biopsy so I do have faith in her. I have a hard time not to double guess decisions that I have made in my life and I am once again doing it. I have been praying for God to help me make the right decision but right now I don't know. I appreciate any guidance from you all.

Curly----I'm sorry to hear that you  won't be able to take tamoxifen, I can understand your disappointment.  I didn't realize tamox was contraindicated if you had diabetes. I wonder if you could take Evista?  (perhaps you could ask your oncologist about it--- but with Evista you do need to be post menopausal).  But an excisional biopsy is a good idea to make sure nothing invasive is in there along with the LCIS.  I had no deformity whatsoever with my wide excisional lumpectomy and the scar was small and faded very well over time. That's good news your MRI was clear. Even if you can't take meds, you could still have high risk surveillance (MRIs alternating with mammos; breast exams). As far as I know, (and I certainly could be wrong)  pleomorphic LCIS is also multifocal, multicentric and bilateral in nature and reportedly said to have a slightly higher risk than classic LCIS. Praying nothing more serious is found.

Anne

Nala,

I think I have the same diagnosis as you - classic LCIS and pleomorphic LCIS. I'm also very interested in this Cleveland study, obviously. I'm also relatively new to this site - I've been hanging out in the recon section - and have only just really realized I had/have LCIS, and what it might mean for my risk for IBC. I had much confusion with what type of cancer or precancer I had - long story that Awb was nice enough to read! So many of you gals are so well informed. Thanks so much for all the research you've done and all the time you've taken to try to bring the rest of us up to spead. It's much appreciated! I had absolutely no idea that LCIS was such an unusual cancer (or precancer). Now, in retrospect, something my onc said to me back in 2006, when I was diagnosed with breast cancer, makes sense: He said he had never, in his 20 years of practice, seen such an extensive cancer, yet with no invasion. But it took sending my path samples to a pathologist at Mayo Clinic who specializes in breast cancer, to finally get the diagnosis of LCIS.

Eve

Nala,

I'm sorry you're having to go thru the stress of awaiting those results. But thank goodness for the MRI's. I was first diagnosed with DCIS, then the diagnosis was changed, post mastectomy to LCIS. My treatment has been the same as for DCIS, tho I've recently had to switch from tamoxifen to Evista. No rads either. Let us know how your results come up. I'll be sending good thoughts.

Eve

Curly, Nala, et al.

My husband is going to have the hospital here do a medical lit search on PLCIS. Maybe the Cleveland study will be in it. I had a second surgery (after the lumpectomy) to get clear margins for what they were then saying was DCIS, but then turned out later to be PLCIS. To get clear margins in my small breast, they had to take the breast. One thing I want to reassure gals about, tho, is that, if something like this becomes necessary, there have been incredible strides made in reconstruction in the last decade. They can, basically, take out just the inside of the breast and replace it with fat from your own body. There aren't a huge number of surgeons that are trained to do this, but more and more. You might have to travel, if need be, but I did it and the experience was very, very positive. If you ever want more info on this, I'm brimming with it! Just know you have options, even if it comes to that.

Nala,

It sounds like, so far, you dodged a bullet. That's great news!  But sorry they have to look some more.