Just Diagnosed with Invasive-Have LCIS
Been a part of this group, but now I've been diagnosed with stage 1 invasive lobular adrenocarcinoma as well as the LCIS. I was diagnosed in Jan. with LCIS and after researching, I was contemplating double masectomies as I was not willing to endure the checking, meds, worry, etc. that goes with just "monitoring". I wasn't going to wait for the shoe to drop (it has now, although because of the size of the cancer I could do a lumpectomy and rads--no thanks--they will be gone). The BS removed more from the site where LCIS was first diagnosed as well as a fibroadnoma which was found with the MRI. She removed both because the fibro was right next to the site. Unknown to her, she removed the cancer with the fibroadnoma. What have I learned? As good as the doctors are they don't know everything. Follow your heart (in my case, the Holy Ghost) and make the decisions you want. My doctor thought I was "silly" to be interested in removing my breasts because of the LCIS. She didn't really say it but you could tell. My husband also thought it was overkill. Now he wonders how I knew and has been incredibly sensitive and helpful in breaking the news for me with family and friends. I wish you all well with peace with whatever you decide to do. You will all be in my prayers.
Comments
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Tabby - Oh my dear, I am so sorry, but also so pleased. You knew in your gut what you had to do. And you were right! The good news is that everything is very early and the prognosis is great! There are a lot of us on this site that have had bmx's and many who chose reconstruction. There are a lot of choices regarding reconstruction if you chose that route. Feel free to PM me if you have any questions. And know that the BMX is very doable, I have not had much problems w/ healing and I have had no problems w/ regrets. Take care and best wishes. -Jean
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Tabby,
BMX was actually a relief for me after the LCIS DX. The surgery was not as difficult as I had feared. While I will probably need a small revision after capsular contracture, I'm relatively happy with my new implants. I'm so glad you listened to your body. Take care of yourself.
Carol(AZ)
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Carol: What's a capsular contracture?
Jean: You have been such a blessing to me! You have answered a lot of questions for me and are so encouraging. My next step is the sentinal node mapping operation. First my BS wants me to meet with the Plastic Surgeon (I'm asking to for two referrals) before the mapping (she says they need to know if I can have immediate reconstruction). Jean: I don't know how to pm you, sorry.
Anybody out there: What to I need to prepare myself for now? I've tried to stay a step ahead of this so there aren't any dark, scary things I don't already know about. Also, I've heard you can't use your arms for a while after surgery and I know I will have drains. How long does this last? How much help will I need afterwards. Any other suggestions would be appreciated as I research a bit.
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Tabby,
I had a bil mast. with implants 9 wks ago and feel great. No regrets. Glad I did it.
I didn't have any real pain. I was just sore and had tightness across my chest. I had 4 drains and once they were out was able to move my arms. It's not as bad as you think and I was so scared too.
When I met with my PS I had a list of questions that I had found on line and added some of my own. I hope that they help you and other ladies.
Take care,
Ann
Questions:
- Lollipop insertion & implants or expanders?
- Can breast reconstruction be done in my case?
- When can I have reconstruction done?
- What types of reconstruction are possible for me?
- What is the average cost of each type? Will my insurance cover them?
- What type of reconstruction do you think would be best for me? Why?
- How many of these procedures have you (plastic surgeon) done?
- What results are realistic for me?
- How will my reconstructed breast feel to the touch?
- Will I have any feeling in my reconstructed breast?
- What possible complications should I know about?
- How much discomfort or pain will I feel?
- How long will I be in the hospital?
- Will I need blood transfusions? If so, can I donate my own blood?
- How long is the recovery time?
- What will I need to do at home to care for my surgical wound?
- How much help will I need at home to take care of my drain (tube that lets fluid out) and wound?
- When can I start my exercises?
- How much activity can I do at home?
- What do I do if my arm swells (lymph edema)?
- When will I be able to return to normal activity such as driving and working?
- Can I talk with other women who have had the same surgery?
- How long will the implant last?
- What kinds of changes to the breast can I expect over time?
- How will aging affect the reconstructed breast?
- What happens if I gain or lose weight?
- Are there any new reconstruction options that I should know about?
- Nipple Sparing mastectomy?
- Tissue expanders? Are they painful?
- How long till the surgery for implants?
- Will there be drains
- What type of implants, silicone or saline?
- How long will the implants last?
- Are the implants painful?
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Yow Ann. That's a great list.
Tabby,
In some cases the implant develops scar tissue circumferentially. This squeezes the implant so it is more firm and less mobile. The only plus I've found is the projection is better. There are many theories about prevention. My PS advocates massage after healing. I massaged equally. However, due to heavy lifting 3 months after exchange surgery, I developed a large seroma that required surgical drainage. I can only imagine this contributed since it is in the same breast.
Ask Ann's questions. That will help you decide.
Carol(AZ)
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Tabby - When I was preparing for my surgery I was on a Thread called December Surgeries. I think most of the surgery threads are similar, it provided me w/ so much feedback on what to expect and what to do. Ann's list is fantastic. I can tell you that you will be mostly back on your feet by 2-3 weeks, and able to return to work by 6-12 weeks. But it is helpful to have someone cook and clean and drive you for at least a week or two after you get home from the hospital. The key things to take to the hospital are:
crocks or slippers (keep off the dirty floors)
jammie bottoms or shorts (have some modesty)
change of underpants
cell phone and numbers and recharger
ear plugs
eye covers
stool softener or metamucil or something like that
button up shirt to wear home and to wear for a couple of weeks (no arm lifting at first)
Take care. It is very doable. BTW: To PM someone, click on their screen name and you will see an option to send a private message. - Jean
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Tabby - Was it Jan. 2008 when you where diagnosed with LCIS? I too was diagnosed with LCIS and ADH in Jan. 2008 also. A month ago I had a MRI which showed a little enhancement by the lumpectomy I had. The radiologist said it is probably from the biopsy from a year ago and did not seem concerned. I have read too may stories about ladies getting LCIS first and then getting an invasive diagnosis later on and only a year after diagnosis of LCIS. This is why I am scared of my next finding. I take tamoxifen and go to the BS every 3 months, but only have a Mamo and MRI once a year. I wonder if that is even enough monitoring. I hope do well with all of your treatment.
Holly
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Holly--I was diagnosed with LCIS about 5.5 years ago--had lumpectomy and just finished my 5 years of tamoxifen in Oct. I continue with high risk surveillance--alternating MRIs with mammos every 6 months, breast exams (by onc--I don't see my bs) on the opposite 6 month schedule, so essentially I'm "seen" by some method every 3 months, and now am taking Evista for further prevention. I had my MRI yesterday and now awaiting results. Feel free to PM me if you'd like.
Anne
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Anne - WHen do you expect to get your MRI results? I have been thinking of you! Take care! - Jean
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Hi Holly: It was this past Jan (2009) that I was diagnosed with LCIS. Originally I had a mammo in Oct. The radiologist said the calcifications shown in my breast were consistent with what had been seen prior (2 years prior) so that she suggested I wait 6 months and mammo again. I wasn't comfortable with it and told her so so she said I could have the option of having them biopsied if I wanted as late as Jan. I decided to wait until Jan., make it thru holidays, then go forward as my insurance plan year starts over then. I called by OB/GYN and asked her if I should wait or go forward--she saw no reason to wait so I went for it. The calcifications were benign but I was diagnosed with the LCIS. The cancer that was found did NOT show up on mammograms, ultrasound, or MRI. The breast surgeon who removed it didn't see it either. It was only 3 mm. but invasive. I am thankful I moved forward but I am an aggressive type when it comes to health. I was already almost 100 percent there on making my decision to remove my breasts with just the LCIS diagnosis. Whatever you do, follow your heart (no matter what everyone else thinks). Best of luck to you.
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I'm glad that you all like my list of questions. Even my PS said to me "Where did you come up with all those questions? Their great"
I hope that they will help someone else one day.
Take care,
Ann
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Hi Tabby-
Will you have to do chemo? I was also diagnosed in January with LCIS and waiting for results from a biopsy last week. Two of the three areas were small like yours so I am wondering what they suggest even if you are having a bilateral mastectomy.
Take care!
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Bandy: So far no one has mentioned rads or chemo to me, but I have yet to do the sentinal lymph node mapping (for the stage 1 cancer). If they had not found the cancer, I was going to still have the bmx and was told I would not have to have either. I am wondering once I do have the masectomies, if they find more cancer, what they will suggest. At this point I don't know but I'm assuming no rads/chemo if there's nothing that comes up with the lymph node mapping. That's supposed to happen after I see a couple of plastic surgeons--right now it's scheduled for April 7. I'll let you know then if you're still interested. Good luck with the LCIS. To me it was as if there was a relief when I found out I had stage 1 invasive cancer--it made the choice so much easier to make and the doctors/family would believe me about how much I worried about the LCIS. Best wishes to you. Do what your heart (in my case the Holy Ghost) tells you!
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Ann: I want to add my thanks for that list of questions. I used them today at the BS, although I only got through a few of them.
I just find it so confusing: the BS always begins by telling me no board would recommend PBM with my diagnosis. But then at the end of the appointments (which seems like the point where she is remembering my specific situation) -- very high stroke risk so tamoxifen seems bad, very dense breasts, ductal extension. premenopausal -- she gets more supportive. Today she said we could possibly skip the SNB, which would really make me favor the PBM.
I just keep going back to what the radiologist said, and I felt he was very frank about how hard it was to read any imaging of my breasts.
Tabby: your story is very very helpful. Thanks so much for sharing it. I am still reeling from a friend who has a BM recently and THEY MISSED THE TUMOR. She complained about a lump and the surgeon said it was just fatty tissue. Luckily they finally started investigating and found the metal clip still in. She had another surgery. This has shaken me a lot from proceeding towards a PBM which is my gut feeling for what is best.
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Seltzer - I had one oncologist recommend a PBM and another recommend close monitoring and tamoxofin. They were completely different extremes on treating my LCIS. Even my two surgeons came from different directions. Ultimately it was what I felt I could handle. Like you, I had very dense breasts and all my readings always stated how hard it was to see anything. I also had a breast full of calcifications, which didn't help the readings. And lumpy, bumpy breasts since I was 19. On top of that, I haver personal conditions that made tamoxofin unfavorable. It was a no brainer for me. But I agree w/ Tabby, in some ways finding a small ILC would make the decision easier. At least then you wouldn't have to always feel like you were defending your decision. I can tell you that I am three and a half months post-BM and feel great! Absolutely no regrets here. Best wishes. Remember, either decision is a good decision. It is what you are most comfortable with. Take care. - Jean
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Seltzer: I know where you are coming from when you are confused. I had told my breast surgeon shortly after learning of the LCIS diagnosis that I was looking into the masectomy option. She had told me that "Door A--close monitoring/clinical trials/meds or Door B--double masectomies". If you choose door b it is final." I felt like she wanted me to try to just "deal with it" but I've had enough interactions with doctors with other things in the past to just do what the doctors say. The last time I saw the breast surgeon at post-op (after removal of more tissue to reconfirm LCIS and to remove fibroadnomaI asked her when she would give me her opinion as to what I should do because I knew what I wanted to do. The pathology report was not back yet, but she just kept saying what if this report comes back and you don't even have LCIS. That floored me because I had done a bit of research on the LCIS and know that's a very slim chance. I really didn't know what to make of it other than she wanted me to hang on to the breasts. Who knows, it's a mute point now. My bs also said that there really wasn't an increased risk related to dense breasts (although I wonder about that one). My breasts are so dense that when they put the two wires in for the wire-guided lumpectomies, the wire bent as they were trying to place it! Like I said before, it was kind of a relief to have the ILC--now more folks are "on my side". My best to you and all of us who are fighting this battle.
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Hi Tabby, I sent you a Private Message.
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seltzer - if I were having a bilat mx, I would not forego the SNB. Should any invasive be found in the removed tissues it would be close to impossible to find the SN after the fact. While it may be rare to find invasive, it is a possibility as some of the women here prove. Having a full axilary dissection instead wouldn't be my choice. (My mom had it and ended up with pretty bad lymphedema as a result.)
I went through treatment - partial mastectomy/lumpectomy and radiation - for DCIS in 2007 and was dx with LCIS and ALH in the other breast in 2008. I have opted for the close monitoring and tamoxifen. So far, so good. I'm not at the point in my journey to take the mx step. Should I ever be dx with invasive, that may change, but it's a tough thing to think about.
Good luck to you and best for making the tough choices.
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Pam- Thanks very much for your message.
Saw the oncologist today, who is head of the breast center, and we decided on the PBM. I have almost five weeks now to sort out the details of SNB on left side (or not, she said maybe the lymph nodes in the breast tissue will be enough). Surgery on April 28.
It's a relief. Especially because she really made me feel sane about it all. She flat out said that MRIs cannot pick up lobular invasive cancer. So that was pretty much the final bit of information I needed.
Is there any way to have implants without tissue expanders? I am really torn on whether to get reconstruction or not. Would sure like to only face one surgery. But I also have very allergic skin and am worried about the prosthesis being uncomfortable.
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Seltzer - You should communicate w/ Stonebrook108. She had PBM for LCIS and had one-step implants. If you can do nipple sparing you would be all set w/ one surgery. Otherwise the TEs are not too bad and the implant surgery is reportedly only a relatively simple OP surgery. Best wishes. I can tell you that my oncologist said the same thing and I am glad that I did what I did! Take care. - Jean
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Hi I was diagnosed with LCIS in Jan 08. I am scared and confused. I saw a bs and ps at sloan and we talked about pbm. I dont understand how they can say to montior if lcis is not ever seen. So its a no brainer to get them removed. I just dont wont to remove my breasts at 38. I just need some answers and maybe talk to any one who has gone through with pbm. I dont want to have that annoying feeling of numbness. Is that true?. If so how do you deal?.
Thanks,
Christine
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Chris - LCIS is not seen on mammos, but it is not an invasive cancer. So you don't have to move quickly into any decision. You can certanly go the direction of close monitoring and tamoxofin approach if you are not ready for PBM's. I think most oncologists and BS' would support that decision. The PBMs are also doable, but you will lose your nipple sensation forever (even w/ nipple sparing surgery) and your breast area will be numb. Though I can say that this does get easier to deal w/ over time - it becomes the new normal. Fortunately, if you chose reconstruction, you will not need to lose your shape and you will continue to look the same in clothes. So there are some pluses. It is a very personal decision and a very difficult decision. Feel free to PM me if you want to discuss it in more detail. Best wishes my dear! - Jean
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