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Topic: any help appreciated

Forum: LCIS (Lobular Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for LCIS.

Posted on: Feb 6, 2008 07:53PM

Kimber wrote:

Diagnosed with LCIS 1/15/2008. Genetic testing negative. Mother and sister both had bc. Oncologist not happy with original size of biopsy which came back multifocal, wants a re-excision in case tissue is hiding something invasive. If so, I'm in for mast. Trying to decide to do bilat mast anyway. I am sick of waiting for appts and test results. Sick of waiting for it to become invasive. Sick of the controversy about LCIS and sick of the anxiety. I do not relish the idea of months of surgery, but I would be happy to give up months to get on with my life and not have this worry and WAITING. I am so sick of waiting. In the same amount of time I have been dealing with this, my sister had a routine mammogram, biopsy, surgery and was halfway through chemo!!! Any experiences and any advice is appreciated, I know it is ultimately my decision, but I could use some guidance....
Kimber

Strong family history, Prophylactic Bilateral Mastectomies 1/19/2010, Under "reconstruction" for 6 months.... DONE! HAPPY! Dx 1/15/2008, LCIS, 6cm+, Stage 0, ER+/PR+
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Feb 6, 2008 08:07PM carstell wrote:

I was dx with ILC with LCIS and some DCIS. I tested negative for BRCA. I ended up doing a left mast only. I don't have the family history you do. My surgeon saidhe would be willing to do the other side any time I wanted. I guess I figured one at a time was enough. Who knows what will happen in the future? I start chemo on 2/8 and. for now, am comfortable with my decision.

  Best of luck.Hopefully , the answer will come to you. Cheryl

CAS Dx 11/12/2007, ILC, 4cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR+, HER2+
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Feb 7, 2008 08:40AM kcq wrote:

Hi Kimber-

I was DX with ILC and LCIS last May.  I lost my mother to bc, but I am not BRCA +.  I had 4 ac and 4 taxol and currently doing Herceptin and tamox.  I opted for only a unilat mast and recon.  My surgeon was willing to do both.  I was not.  It is a personal decision.  I mentally, could not do both.  I had an MRI done before my mast and my surgeon said there was an abnormalty on my other breast but was not concerned.  He said that we would redo the MRI in six months to see if it was still there (MRI's have a lot of false positives).  Even knowing all of this, I still could not bare to have a bilat mast.  I beleive we all need to do what we believe deep down we can live with.  Because if you live physically and die mentally, you really still have died.  So, you really need to do what is most comfortable and what you can live with.  My sister is a nurse, and she was very upset that I did not do a bilat.  But women who are not faced with it and research reconstructions, have no idea.  My friends thought--"Hey free boob job"--NO!!!  It isnt a chance for a free boob job.  It is no where NEAR a boob job.  I may not have had the best boobs, but they were mine and I hated to lose them. 

Good luck to you--lots of love.

Kim Dx 5/1/2007, ILC, 4cm, Stage IIB, 1/4 nodes, ER+, HER2+
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Feb 7, 2008 08:22PM csifinski wrote:

Kimer 

Hi, I was diagnosed with ADH in Nov 07 and LCIS in Jan 08 , I too am sick and tired of all the tests, waiting and worrying.  My oncologist hinted to me that I may want to have a bilat mast.  I have had 3 biopsies and 1 lumpectomy already, I just don't think I can do it anymore.  However, I am holding off on the that decision until I have a MRI and genectic testing.   I know my post was not much help as it was "I hear ya".    Hang in there, and I know you will do what is right for you.

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Feb 9, 2008 05:00AM leaf wrote:

I'm so sorry you are going through this Kimber. You have seen first hand what the experience of bc is like. Your onc wants re-excision. You are sick of worrying. I wish I could take all these feelings away of worry and fright and uncertainty and stress. Some people try to do anything to escape these feelings. But I can't stop them for you.

I have no personal experience with mast, but hope you have read the Surgical, and, if you are interested in the option, reconstruction forums. Do your own research. Some people find seeing a therapist and/or a significant other can help them come to a decision.

I have a weak family history and LCIS + ALH, and have had 2 biopsies after my original core biopsy and excision. My bs is not interested in further surgery for me. As you can see, women with LCIS are given a wide variety of recommendations.

I wish I could take away the feelings you are having. Unlike our sisters with DCIS/invasive, we have more time to make our decision. Go to whomever and take as much time as you need to make the best decision for YOU.

Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, ER+/PR- Surgery 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 9, 2008 07:21PM Peaches70 wrote:

ALH in 4/06 - L breast, LCIS in 2/07- R breast; 4 biopsies (1 bil +3 more on R) - Believe me, I'm there, as you may have read on other posts. With the ALH, after doing extensive obsessive reading, I accepted the possibility of PBMs, but did not want to go that way if it could be avoided. With the dx of LCIS in Feb, I began to realize that my level of concern was elevating. After the biopsy in August, I started adjusting my direction for treatment. I talked to all my doctors and my mother and my dh and my hygienist and a few friends and strangers. I bored a lot of people.

I recalled some advice I had read a while back about small breasted women and biopsies. It said something to the effect that repeated biopsies and lumpectomies in small breasts could make your breasts "lumpy" and for that reason, such women should consider that when making a decision for or against mastectomy instead. I knew back then that was something I did not want to happen. I did not want to be continually carved away.

With the addition of the stress and pain factors and the impact the biopsies have had on other parts of my body, I am "facing the dragon." When the PS pointed out how much smaller my right breast is than my left now, that stunned me but it validated my decision. I think I was in denial about the seriousness of the situation; I also did not want to alarm my mother or husband. Even now, a little voice in my head asks me if I am not being melodramatic or doing this for attention. It is the hardest thing for me to do - ignoring that voice and trying to stay the course.

Anne

Dx 1/25/2007, LCIS, Stage 0
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Feb 11, 2008 12:02PM femme wrote:

a simple question, Anne - "In your heart of hearts, at this point in time, with all the info you have now, what do you think you should do? "
femme

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Feb 11, 2008 04:42PM Peaches70 wrote:

My heart says I should do it.

Thanks.

Anne

Dx 1/25/2007, LCIS, Stage 0
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Feb 11, 2008 09:01PM ophelia wrote:

Anne, I must tell you that in the last months before my mast.  I experienced exactly the same thoughts that you are experiencing.  Am I overreacting? Is this really necessary? I decided to do an MRI the month before surg. which didn't really show anything of concern.  I had expected to get more bad news and when I didn't I started 2nd guessing myself even more. Of course the MRI didn't take away all the previous dx's but I was scared. Once I started thinking about everything that I had been told by my drs I always came back to the same conclusion. 

After my surgery, I honestly had no regrets. I'm sure it made all the difference to wake up with breasts, but I just felt like I'd made the right choice. I got my path. results last week and there was no cancer present in either breast.  YeaH!!!!! Dr. said that there was a lot of suspicious cell activity in both breasts.  Rt breast had more LCIS, originally only found on left.  She felt that eventually I would have had an invasive cancer and told me that I definetly  made the right choice.  

The hardest part for you in the next few months will be the 2nd guessing and worrying about the actually surgery.  I think its better when you have less time to dwell on everything.  But you'll be busy figthing that ins. company. Don't give up, that's what they're hoping for.

Hang in there...

Maria Dx LCIS, Stage 0, 0/2 nodes
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Feb 12, 2008 07:24PM Kimber wrote:

ophelia,
what kind of recon did you have, if you don't mind the question....kimber

Strong family history, Prophylactic Bilateral Mastectomies 1/19/2010, Under "reconstruction" for 6 months.... DONE! HAPPY! Dx 1/15/2008, LCIS, 6cm+, Stage 0, ER+/PR+
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Feb 12, 2008 07:24PM - edited Feb 12, 2008 07:24PM by Kimber

This Post was deleted by Kimber.
Strong family history, Prophylactic Bilateral Mastectomies 1/19/2010, Under "reconstruction" for 6 months.... DONE! HAPPY! Dx 1/15/2008, LCIS, 6cm+, Stage 0, ER+/PR+
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Feb 12, 2008 07:26PM Kimber wrote:

peaches,
if my lumpectomy comes back full if it AND another component, my heart tells me to do it, too. We are in this together.
Kimber

Strong family history, Prophylactic Bilateral Mastectomies 1/19/2010, Under "reconstruction" for 6 months.... DONE! HAPPY! Dx 1/15/2008, LCIS, 6cm+, Stage 0, ER+/PR+
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Feb 12, 2008 08:22PM Peaches70 wrote:

ophelia,

Thank you so much for your words. I'm up for my six month mammo and MRI in one week. (cuticle biting time!) But I am okay with the decision. Only things to work out are the insurance issues, who and what kind.

Anne

Dx 1/25/2007, LCIS, Stage 0
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Feb 12, 2008 08:46PM ophelia wrote:

Kimber, I had SGAP reconstruction with Dr. Robert Allen in NY.  He pioneered the GAP and the DIEP procedures 15yrs ago.  They are basically the same procedure with the exception of the donor site.  The GAP uses the buttock , and the DIEP uses the abdominal tissue. 

Take care...

Maria Dx LCIS, Stage 0, 0/2 nodes

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