Wish it WAS dcis

pattimay

I'm 51 and it all started with my yearly mammo which came back abnormal.  On to spot compression and then stereotactic biopsy for microcalcifications.  On to a surgeon for two benign papillomas in left breast and atypical cells.  Had a wide excision after wire localization. Had my followup appt. with surgeon Monday but path report was not in because it had to be sent out to another hospital because pathologists were on the fence if I had ADH or DCIS.  My surgeon was preparing me to expect the DCIS and he said he would prefer to do mastectomy because I had so much atypia that he already took 25% of my breast tissue and can't do a reexcisional without my breast looking disfigured.  Saw my surgeon again today because the path report came back.  They decided it was not DCIS but a very large area of ADH.  Surgeon feels confident that he got all the cells which were very abnormal since it was right in the middle.  It's terrible to say but if it was DCIS I would just get the mastectomy and be done with the whole thing.  Instead now i have to go every six months for ultrasound, Mri with contrast(have to call a month ahead to get pretested since dye could cause renal failure if I had kidney problems)  and doc appts.  As well as taking tamoxofin which I read has so many side effects that I fear more then getting the breast cancer.   I'm very scared about taking this drug.  What if in a few years something shows up and I would need the mastectomy then.  I'd be older and wouldn't handle it as well.  I'm just so confused . NOw it just feels like constant worry. Anyone feel as I do? Thank you all ladies for any advice or incite into all this.

mawhinney

Even if you have a mastectomy there will still be routine follow-up tests. I had a unilateral mastectomy and every 6 months I alternate between a mammogram on the good side and an MRI on both sides. Then there are additional tests if there is any concern.

You might consider following your doctor's recommendation for the next 6 months to a year giving your self time to educate yourself and to obtain a 2nd option on your case.  Ask for copies of each and every test so that your have a file for yourself and copies to take to other doctors.

Many, many gals take Tamoxifen or other meds without any problems.  Like anything else most often it is the ones that have problems with their meds that talk about them. I have had very little problems with my meds.

Kimber

Pattimay,

Tamox is not that bad, at least not for me.  The monitoring IS stressful.  If you decide you cannot handle it, talk to your surgeon about PBM.  The peace of mind is worth everything. I will stay on tamox, but no more biopsies, mammos or MRIs.  I did the monitoring and tamoxifen for two years, resulting in 4 more biopsies.  I have elected to do PBM in January and I am so at peace.  mawhinney is correct - maybe start with the monitoring and see how well it goes.  Since your ADH was all removed, maybe you will never deal with this problem again.  Only you will know when you are ready to move forward to preventative surgery.  My best to you.

musiclovermom

pattimay

I have been there too. I decided to go with the bmx in October of this year. I could not have handled the stress of follow up each time wondering if more was found.

The path report from my biopsy, excision of a duct and then the lumpectomy I had showed DCIS  & ADH - also invasive cells. When my BS said she needed to go back in, I told her to take the whole breast and while she was at it, take the other one too.

I have never second guessed my decision and it turned out I made an excellent choice due to the fact the bmx path report showed DCIS in the non cancer breast and I had a secondary primary cancer in the right.

Peace of mind was what I was aiming for. I am so happy with my decisions. I caught it early enough - no node involvement!

I am almost to the end of the expansion of my tissue expanders and hope to have my implants by the middle of February. There was never a time when I felt mutilated at all. My PS is wonderful and I am very happy with his results!

As far as Tamoxifen is concerned, I am still having my period and have not noticed any side effects that are bothersome. I think I am even losing some weight on it. That is a PLUS!

If there is anything I can help you with let me know.

Kimberly

pattimay

Thank you all for writing.  I'm also still getting my period regularly althought much closer together with heavy bleeding.  I don't understand that if you stop producing as much estrogen when you go into peri or menopause why would it be necessary to take the tamoxifen which stops the estrogen production?  Also why not check the estrogen receptors in ADH.  My cells were very abnormal in one area and that's why they were on the fence about it being DCIS or ADH. I already can't sleep from the night sweats and I know it's one of the side effects of the Tamoxifen.  Since my breast are small and he already took 25% I can't have another reexcision so I feel that I'm just waiting until more microcalcifications shows up on mammo and worrying about when this will happen and getting a mastectomy anyway.  It's just so stressful.  I feel so guilty feeling this way when I read about the ladies who actually have breast cancer and I'm complaining about the close monitoring.  I think being in perimenopause has made my emotions and everything go crazy. Thank you so much for writing.

Jelson

Pattimay

This is my understanding of tamoxifen. it does NOT stop estrogen production, it stops estrogen reception by the breast tumor tissue which is estrogen receptive. Even when your ovaries eventually stop producing estrogen, it is produced elsewhere in your body, it is produced by fat cells!! So, even if you are menopausal there is estrogen - though much less- being produced by your body, estrogen that could feed estrogen receptive breast cancer cells - wherever they are. I can't speak to your question about ADH, I was going to look to see whether ADH was mentioned in the info supplied by the pharmacy with my latest prescription, but I must have thrown it away.

Don't feel guilty about your feelings, we have all been there.

mabbam

 i feel for you-i too have dcis and doing the monitoring followed by the stress of waiting-had the duct removed that was bad-but still apprehensive about it-i'm suppose to start evista the first of the year instead of tamoxfin due to side effects-is anyone else on evista that could help?

leaf

Hi pattimay!

Also why not check the estrogen receptors in ADH

  I think some places do and some places don't.

Trying to read some articles for you, I can't find an article that says X% of ADH in this study was ER +, but here is some background info:

In the normal pre-menopausal breast, ER(+) cells comprise the 7% of the total epithelial cell population [48]. ER(+) cells are luminal epithelial cells, evenly distributed, and seem to secrete factors which paracrinely influence the proliferation of the adjacent ER(-) cells [48,49]. ...In the context of ADH, LN and DCIS, and contrary to the normal breast, ER(+) cells are surrounded by contiguous cells characterized also by ER-positivity [49].http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1894800/?tool=pubmed

In this 2005 paper, they say there may be 2 different models of going  from pre-cancerous to cancerous lesions: one is predominently ER + and the other predominently ER-.Thus, there are two distinct major pathways to the evolution of low- and high-grade invasive carcinomas: whilst the former consistently show oestrogen receptor (ER) and progesterone receptor (PgR) positivity and 16q loss, the latter are usually ER/PgR-negative and show Her-2 overexpression/amplification and complex karyotypes. The boundaries between the evolutionary pathways of well-differentiated/low-grade ductal and lobular carcinomas have been blurred, with changes in E-cadherin expression being one of the few distinguishing features between the two.http://www.ncbi.nlm.nih.gov/pubmed/15641021