LCIS Diagnosis--What Do I do next?

Mykidsmom · February 2009

Tara - I have to tell you that I am a worrier from the word go. That's one of the reasons I chose a BMX. I just COULD NOT deal w/ the constant monitoring and waiting for test results. No way no how for this lady. The BMX was a no brainer for me. I totally relate to your feelings of anxiety about the LCIS. And my natural breasts were so lumpy/bumpy that I felt lumps in them on a daily basis. I totally understand. I just wish there was something I could do to help. Take care and know that we all care. - Jean

Mykidsmom · February 2009

Tara - Opps, I didn't give you all the reasons my oncologist listed:

1. hx of bopsies (3)

2. hx of problems w/ breast, first mammo at 19

3. hx of lumps and bumps, fibrocystic breasts, since age 19

4. very dense breasts dispite being post-menopause

5. one breast with calcifications and microcalcifications from one end to the other, high and low

6. hx of needing to come back for dx mammo's and US's

7. worry wart

8. no real "need" for my breasts. At 54 I don't intend to nurse any more babies

9. desire to get on w/ my life

10. Moderate family hx of breast ca and other ca's

11. Likelihood that I will have a BMX at some point in my life, and it is easier to deal w/ it at 54 than at 64.

I think that is about it, but there are probably other reasons. My oncologist and I talked for over an hour.

Take care. - Jean

taraleec · February 2009

Jean I'm sorry you had to endure so much. I try to talk to my mom about my breast issues and she doesn't want to. I am a worry wart, terribly so. I had 2 lumpectomies within 7 months & less than a month after my last surgery another lump came in a different spot. I too have dense breasts and lately my right one's changing every 2-3 months. My one grandmother had uterine cancer and my other grandmother died at 38 so we really don't know about her. I am constantly having mammos and US's too. My radiation oncologist said the Rt one is very lumpy/bumpy, it never was before. And he says I can no longer compare my Lt with Rt since I had radiation the Left has totally changed. I'm scared that the MRI's not gonna show anything and I just know there's more stuff in there now. Do you know if MRI's more able to detect more? I appreciate your sharing and your thoughts. Good luck to you.

ckslow4 · February 2009

Dear Mykidsmom,

I had a single sentinel node removed from each underarm but I don't think this is what contributed to the lymphedema. As a nurse, I was taught that you are not supposed to start or put IV's, take blood pressures or allow lab draws from the arm on the side of the mastectomy. Since I had both breasts removed, I guess my nurses thought both arms were ok to use even though I kept asking for a central line to be placed. I had 8 (yes eight) intravenous sticks and infiltrated IV's (4 in each arm) in 5 days. There is so much scarring and inflammation in my arms it's no wonder I have lymphedema in both arms. The reason I sounded "philosophical" was that no one can help you decide what is right for you. Even if I knew this was the outcome, I would still have the surgery. I may not have had the reconstruction because the TRAM flap is part of the truncal swelling (the scarring) prevents the fluid from draining. As for your question regarding your risk of getting lymphedema even though no nodes were removed, there is always a small risk because the breasts are full of lymph nodes and depending on how you scar there can be some blockage to lymph flow causing swelling. Not all that common though but always good to research it even though you doc said there is no chance you would get it. When I first told my surgeon I was experiencing ring tightness and hand swelling she said "You'd be a case study if you have Lymphedema". Well I guess I'm a case study. I hope I answered your questions. Be well. Tina

tabby · February 2009

Jean: I was just diagnosed with LCIS after a 3rd biopsy revealed this in my left breast. I am scheduled for an MRI on Feb. 16 then more surgery to make sure that's all that's at this site and to reconfirm the LCIS as well. I am fibrocysitic and have had several lumps etc, and I'm wondering to myself why keep my breasts? Am I just waiting for cancer to occur? Why go through the continued worry/costs both physically/emotionally and to the pocketbook. Did you have surgery? How are you doing? Tabby

Mykidsmom · February 2009

Tina - Thanks for the information - I didn't know that about lymphedema. Though they were careful not to take my bp in the hospital on my arms.

Tabby - I had my BMX in December. All went well. I had tissue expanders placed at the time of my mastectomy and came out of surgery w/ my initial fill. So I haven't really been flat right from the beginning. I am almost done w/ my fills and I am currently scheduled to have my exchange to the implants in early April. Since I didn't have nipple sparing surgery, I will most likely have nips and tats later in the summer and early fall. I am so sorry that you are dealing w/ all this!!!!!!!!!!!!!! Take care. - Jean

taraleec · February 2009

Hi Tabby, I had LCIS, complex sclerosing lesion(radial scar) intraductal hyperplasia and sclerosing adenosis in my Lt breast. I feel the same way, wondering if I should even keep mine. Last June during radiation to my Lt, I found lump in my Rt, had lumpectomy in October; was adenosis. In December I felt another lump in a different spot away from scar site. My gyn can feel it, my surgeon can't. I had mammo, ultras, MRI, mammo & ultras were clear. Went back to oncologist, she also can feel the suspicious spot and says I need another MRI. I asked "what if this next MRI doesn't define the spots?" she said "we'll discuss more surgery" I asked, another lumpectomy?, she said "A MASTECTOMY". So I know the feeling and am leaning toward that decision. I have an appointment with another surgeon-breast specialist also. LCIS(even tho some say it's not cancer) or any breast cancer/cancer is a scary thing. Good luck to you.

Mykidsmom · February 2009

Tara - Sounds like you are learning more each day. Best wishes my dear! - Jean

taraleec · February 2009

Hi Jean, I don't know if I'm really learning, it's terrifying. But I feel that I'm finally getting some answers from someone, and it's confusing. .

Hope you're healing well, but don't overdo it. Take care. Tara

seltzer · February 2009

Do wide excisional biopsies for LCIS have margins? I have the impression reading mine "multifocal" proliferative, etc. that there were no margins, but maybe it is not possible with LCIS.

I am too worried about stroke to take tamoxifen, although that was the first suggestion. Now my BS is discussing taking the ovaries, which kind of surprised me. I am leaning towards aPBM.

seltzer · February 2009

Dear Taraleec,

Sometimes I feel strange because it was fairly easy for me to move towards a PBM decision. I am a single mom of three and just feel really responsible for sticking around as long as possible to help my kids. Your son is adorable.

Also I just don't feel very reassured about MRIs--my radiologist said they determine if you have invasive cancer because they can see the blood vessels--but I am not sure how good they are at tracking LCIS, that seems to only come from biopsies. I wish you all the best. I am learning a lot from your posts, so thank you.

Anonymous · February 2009

Seltzer----I was diagnosed with LCIS in Sept 2003 by suspicious microcalcifications on mammo and then confirmed by wide excisional biopsy (lumpectomy). My margins were "clear", but clear margins don't mean much with LCIS as it is most generally found to be multifocal, multicentric and bilateral, meaning it can be found throughout both breasts. But having it in only one spot or having in it many spots doesn't change your overall risk. The only way to "remove it all" is to have bilateral mastectomies, but that isn't medically necessary as it isn't invasive bc (it's in-situ, non-invasive bc). Although some women make the choice to have BPMs due to not wanting to live with the high risk and all the surveillance and anxiety that goes with it. Personally, I'm OK with it on a daily basis, but the apprehension does creep in when testing time approaches. I have mammos alternating with MRIs every 6 months, breast exams on the opposite 6 month schedule, so I'm "seen" by some method essentially every 3 months. I just finished my 5 years of tamox 4 months ago, which I tolerated very well with only minor SEs (mainly hot flashes), and I just started on Evista this am for further prevention. I think it boils down to personal choice--both choices take courage--it's a decision that we each have to make for our own situation. Good luck to you whatever you choose to do.

Anne

Mykidsmom · February 2009

Anne - I haven't crossed paths w/ you in a while. How are things going? It sounds like all is well on Evista - I am so very glad! Your post summarized our choices so well. Take care. - Jean

Anonymous · February 2009

Jean--just started on the Evista this morning, so I'll have to let you know! I go for my next MRI on March 17th--so any prayers sent my way will be appreciated! Hope your recovery is continuing to go well.

Anne

Mykidsmom · February 2009

Anne - Hugs and prayers will be going out to you on the 17 of March. I am healing well. Better each day. I feel very rested and will return to work soon. Take care. - Jean

psalmist · February 2009

Anne,

Thank God for breast MRIs. They weren't available in my town the whole time I was under treatment for LCIS but now that I've had my BPM breast MRIs have become an option. I'll have to undergo them from time to time just to keep a check on things. I think that option would have given me much more peace in dealing with LCIS prior to surgery. Best wishes to you!

jaravelvet · February 2009

Hi. Just found you all tonight. I am a 42y/o single mother and was dx. with LCIS in Sept.'08 after a series of mammos, ultrasound's, MRI, ultrasound guided biopsies bilaterally, and then a surgical excisional biopsy on the L. The latter giving me the final LCIS dx. The whole experience was an emotional roller coaster. The clinicians would say one more test and then you will know, but I kept having to do more and more tests and now it will never end. I knew right away that I would not be able to live my life to the fullest knowing that every 6 months or more I would have to face the anxiety of having to wait for test results and that those results would potentially lead to more tests or worse. I guess you could say that it was a relatively easy decision for me to have PBM. Basically a no-brainer. I got no resistance from any of my doctors, esp. my oncologist who said to me "I can't tell you what you should do, only you can make that decision, but if you were my wife, daughter, mother etc., I would tell you to go with PBM." He is a younger physician and was highly recommended, so his words pretty much sealed the deal for me after hearing all of my options. I did a lot of research and on March 17th, I am scheduled for a PB skin/nipple sparing mastectomies. I have found a breast surgeon that has experience with this procedure, not very many are in my area (Philadelphia/Southern New Jersey). Basically, I joined today because I don't know anyone with my dx. at all, regardless of how it is dealt with. I just wanted to see what kind of company I am keeping and to share my story.

Thanks for listening (err..reading). :-)

Mykidsmom · February 2009

Jaravelvet - I could have written your post. It was so much me over the past year. And we received our dx around the same time as well. I totally can relate to what you are saying. It is cool that you can do nipple sparing. Though I am not that far from you, I chose to stick w/ doctors that know me and my family and therefore they were not comfortable w/ nipple sparing. It is okay, but your results will be much more natural. So go for it! Meanwhile I think you will find a lot of information on what to do to prepare for your surgery. For me, the two most important suggestions that I hadn't thought of on my own were - jammie bottoms or shorts to wear under that darn hospital gown, and crocks or easy in/out slippers to put over your hospital socks so that you can get in and out of bed w/o taking the floor germs with you. The rest of the suggestions are primarily to prepare ahead of time so that you can truly relax for a couple of weeks. Let others know that they can and should cook and take care of you. This is your time to be cared for!

Are you getting tissue expanders placed at the time of your surgery? If so, feel free to join us on Exchange City. We can add your name as an exchange to be happening in the future.

Best wishes and feel free to PM me if you have any questions. You will be fine! - Jean

CAZ · February 2009

Hi Jaravelvet,

I was DX w/ LCIS in 1/08. My biopsy surgeon said (after 11 days of waiting to talk to her), "they're like ticking time bombs." She also said it was impossible in my area to get immediate reconstruction (ie., tissue expanders placed at time of PBM), because she couldn't coordinate with a PS. I was unhappy and sought a second opinion at the Mayo Breast Clinic here. They've been wonderful. I am 3 months post exchange surgery and still convinced this has been the best decision for me. While "surgical risk reduction" doesn't drop our chances of cancer to zero, it is close enough for me. My PS says any tumor growth would be palpable since my chest wall is now right under the skin.

I cooked and froze all my favorite foods while waiting for the big day. Make sure to pick up your pain meds prior to surgery. Since they can cause constipation, a stool softener may be helpful, also. There are great lists in Before/During/After.

I also TIVOed anything I thought might be interesting.

You are not alone in this journey. Come to the boards to rant, question, and share. We'll be here.

Carol(AZ)

psalmist · February 2009

Jaravelvet -

I put up with the battery of tests and Tamoxifen and mammos and doctor visits for 3 years and finally because of changes on my mammos I went with the BPM. I wish I had done it when first diagnosed, as they ended up finding a tiny cancer (IDC) anyway. So - your gut feeling will usually lead you well. Welcome. So sorry you ended up in this group, but we're happy to chat with you anytime!

Anonymous · February 2009

jaravelvet------I was diagnosed with LCIS about 5 and a half years ago. I chose the high risk surveillance route and tamoxifen and am doing fine with it. I think both our choices ( BPMs or surveillance/tamox) take a lot of courage. I go for my next MRI on the 17th------I'll be praying your surgery and recovery goes well.

Anne

Mykidsmom · March 2009

Anne - You know we will be thinking of you on the 17th!! Best wishes and let us know how things go!! Take care. Hugs - Jean

Peaches70 · March 2009

Just had my MRI & mammo a week ago. Came back clear again! The only downside of the experience was that the lab lost my bloodwork (for the MRI contrast) so I ended up being at the hospital from 8 AM until 2 PM. Worth it,though, to be done for another year.

Anne

Mykidsmom · March 2009

Anne - That's FANTASTIC!!!!!!!!!!!!!!! You must be so very pleased! Have a great year!!!!!!!!!!!!!!!!! Take care. - Jean

taraleec · March 2009

I have just seen my original ONC today, she was on maternity leave. Her as well as the other Dr. in her group say I should have a mastectomy. I had LCIS, along with other findings in my left which I had radiation for. After that I had a lumpectomy in my Rt; adenosis. Now there's a new lump in my Rt which she, and my GYN and a surgeon can feel. She believes I'm facing 'eventual' mastectomy. I had a FNA on the lump and it was 'inconclusive'. My ONC says I need to have it removed. And I am small breasted to remove another lump, it's going to take a great deal of the tissue already and we don't know what else may be in the remaining tissue. I really don't know what to do. I'm so stressed.

Anonymous · March 2009

tara--perhaps you could have a stereotactic core biopsy on these areas to give you more information? Don't let them rush you into mastectomy before you have all the facts of your pathology. Since the FNA was inconclusive, they need to do another type of biopsy to figure out what you're really dealing with.

anne

Anonymous · March 2009

Peaches--that's wonderful news--what a sense of relief ! I had to have bloodwork before my last MRI, so I asked about it this time. They said only once at age 50, then not again to age 65--it's to check kidney function as the gadolinium (the contrast dye) can affect your kidneys. It was good to know we don't have to have an extra blood test before each MRI. I'm not far behind you--my next one is March 17th. Wish me good luck!

Anne

Mykidsmom · March 2009

Anne - Best wishes w/ your MRI. It is coming up soon and you will have your great results for another year! I will be thinking of you.

Tara - I am so sorry you are dealing w/ so much! Between your custody case and your breast issues, there is a lot on your plate. Know that the BM is totally doable, but not something you have to rush into. I would take things one step at a time. As Anne suggested, you can get a bx w/ more conclusive results. The core bx's do not leave a scar and are relatively "easy" so they would be a good option. Meanwhile work through the issues w/ your son's custody. Then, when you have a chance to breath, sit down and consider all your options and conditions and risks and make your decision. That is the blessing (if you can call it that) of LCIS, nothing has to happen in a hurry. You have time to think things through. Best wishes w/ everything my dear! - Jean

tabby · March 2009

Mykidsmom: Thank you for your reply. Somehow, seeing your name in there really makes you feel loved! Anyway, could you give me some idea of what I'd be facing should I decide to go ahead with the masectomies? It sounds like there are "stages" involved with reconstruction no matter what (was hoping to avoid that since I haven't been diagnosed with cancer per se (LCIS)). I'd like to check out the nipple sparing thing (I know you didn't do that but I've noticed a few on this site that might give me some info on that as I'd like to spare as much sensation as possible, plus it would hopefully "look normal" to me. I don't know if it's worth it. Could you give me some idea about the time and cost I'm looking at? I'd rather know now and be prepared for it than just get down about it later. Hope you are well.

tara: Thank you for your response. How are you doing? I feel for you having to deal with this and a custody issue as well. I say "amen" to mykidsmom response. Please make sure this is your decision and it's something you will be happy with. Let me know what you decide and I'll do the same for you as we're facing the same thing.

psalmist · March 2009

Peaches, congrats on your test results. SO happy for your peace of mind. Anne, will be thinking of you until the 17th, praying that you also have a clean bill of health and can celebrate another year with confidence. Jean, you are always encouraging others; how are you getting along? Your exchange is coming up - have you made all your decisions on final implant? Tabby, your questions remind me of myself last summer when i made the decision to have PBMs instead of continuing with the vigilance. As Jean said before, Mastectomy is doable. But it is not reversible. You do give up normal breast sensation, even with nipple sparing and skin sparing surgery. It is an uncomfortable process as your muscle and skin are stretched out with a tissue expander - again doable, but a long process (mine will be a full year by the time I have nipples reconstructed). Your final implant will most likely look nice but not like your own "girls." You have to adjust to the new you. I love my new implants, but I was very small chested before with lots of divots left behind from multiple biopsies. These are full and soft and even, but still not "mine." I have accepted that, though. As for cost, I have good insurance, so the cost to me has been my deductible each year. Without insurance, I would expect the final tally could run close to $30k or more. These boards helped me immensely with the emotional adjustment and expectations associated with mastectomy and recon. My prayers are with you. The decision is highly personal.

LCIS Diagnosis--What Do I do next?

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