Chosen a mastectomy with no further treatment?

I have a similiar diagnosis with the exception my tumour is grade 2 due to pleomorphic nature. I am awaiting results from the TailorX or Oncotype test to find out what my course of treatment will be.  Have you had the oncotype test?

I have had no further treatment after my double mast with stage II Papillary Carcinoma. I am ER/PR+ and they don't do chemo for ER+ anymore. I am HER2- so Herceptin was out. Because of the mast I don't need rads. even with 2 micromets to nodes, as that area is still controversial.

I do feel kind of vulnerable though....I know how you feel.

Cathy, it was actually the ladies on this board who pointed out they don't do it anymore! Surprised me too....

Maybe start a thread about "ER+ and chemo?" and see who fills you in.

Please be careful about posting all-encompassing statements like "they don't do chemo for ER+ anymore." I also read RESEARCH that said that lobular does not respond to chemo. Two different surgeons quoted that same research and thought I would not end up with chemo. However, you are best off talking to a medical oncologist FIRST or even several before making ANY more decisions concerning your cancer.

Because of my tumor size of 5cm as determined by MRI and PET and his knowledge, experience and ongoing education of my tumor type, my med onc recommended chemo before surgery. He recommended a very toxic blend of TAC, so I sought the opinion from a second med onc who confirmed his treatment plan.

My pleomorphic invasive lobular carcinoma which is ER/PR+ and HER2- has shrunk to the point of being unpalpable, making me very grateful that they did indeed do chemo for it. (never thought I would say THAT as I sit here bald, feeling like I have been run over and still sick to my stomach from the last treatment on Feb. 15.) I will be ecstatic to learn that something better than chemo has been found and no one will ever have to have this tx again, but it still works with some ER+.

The best point I have seen made on these posts is that every woman's cancer is individual and needs to be evaluated by a team of doctors including a surgeon, medical oncologist, radiation oncologist and plastic surgeon from the individual's perspective before any action is taken. If you are fortunate, they all work together. In my case, I went with referrals from nurses I trusted and sought out mine individually. Before making MY final choice on whether to have radiation and/or hormonal therapy, I have requested MD Anderson do a second workup on my original core biopsy slides since pleomorphic ILC is so rare. Because my particular cancer does not show up on mammos, I have definitely opted for bilat mxs with immediate reconstruction.

Montana, please don't beat yourself up for decisions you have already made. Too many women don't make any decision out of fear.You are taking the right action now by gathering every bit of information you can before making the next in a long line of decisions in dealing with this b*tch called breast cancer. The women who post on these threads offer invaluable support and their experience, but we are not doctors. I am the last person to take a doctor's advice blindly (just ask mine), but they are the ones (and more opinions are better) to talk to before making your decisions (and do not be afraid to ask the reason/research behind THEIR opinions.) 

Sue

Thanks Sue for the information.  So far I have had the surgical oncologist and a plastic surgeon  tell me they didn't think I would need to have chemo.  It is the medical oncologist who wanted me to have the oncotype test done to see what the score would be. His opinion is that every tumour is different and this test is a good way to see if it will respond to chemo. This seems logical to me.

Cathy

I think part of my fear right now, is that since PILC is so rare, they really don't know that much about the aggressiveness of it?  Therefore I am hoping that the oncotype test will shed some light on that aspect of it by specifically testing "my tumour".  I guess for now, it is the best of what is available out there. 

Sue, you  must be so relieved to see that the chemo did work so well on your tumour, and have your last treatment behind you now.  Congratulations.

Marianne, when do you expect the results from Oncotype test?  I should be getting mine this week some time.

Cathy

Cathy,

I, too was diagnosed with Pleomorphic Invasive Lobular Carcinoma (PILC), but in discussing that with my breast surgeon and oncologist, I am told that the "pleomorphic" label only has to do with how the cells line up.  They pretty much dismissed it as not being as significant as other factors (node status, size and grade of tumor, etc.).

I should know by March 10th.  The hospital lab screwed up -- didn't have the right box to send the sample off to California -- then needed a release signed -- added 5 days to my worrying -- bless their hearts!  So, it just got sent FedEx yesterday.  I understand it takes about 2 - 2 1/2 weeks.

I saw a great report online.  It was a report from the National Comprehensive Cancer Network, titled "Adjuvant Therapy for Breast Cancer".  Mentioned the Oncotype and I found it very interesting...you will too as you are also node negative and ER+

Marianne

Sue,

just some added info....my tumor also did not show up on 2 mammograms, and 2 needle biopsies were benign....they thought they saw something on the sonogram, and it was only because my breast surgeon ignored the 2 benign biopsies (one of which she did) and went in to do the excisional biopsy (lumpectomy) that we realized it was cancer.  I think it is the "lobular" area (rather than the pleomorphic) that makes this little sucker tricky to find.  Also lobular vs ductal I think is more the issue than the pleomorphic thing.

Think we will all qualify for medical jobs by the time we are done.....

Marianne

Hi Montana,

Your story is very similar to mine- my tumor was 0.8cm. But, mine was a Grade 2. Even so, my Oncologist initially was not going to recommend  chemo or Tamoxifen since I had a bilat mast instead of my original decision to have a lumpectomy. He eventually changed his mind as my Oncotype DX score was low but not super low. So, I'm on Tamoxifen and doing well with it. 

I just looked up those same guidelines again that you mentioned ( I had them nearly memorized when I was first diagnosed!). On page 15 of the guidelines that came out 10/09 it says for pNO "No Adjuvant Therapy."  However, there IS a footnote to that guideline that says, "If ER+ consider endocrine therapy for risk reduction and to diminish the small risk of disease recurrence."

Best wishes to you!

Montana- my surgical margins were technically negative, but the path report stated "focal lobular carcinoma in situ comes to within less than 0.1mm of the lateral margin." When I exclaimed "less than 0.1mm?!" to my Onc, he said, "yup- about the width of a strand of hair." Also, the mass itself was 0.2cm from the deep margin and 0.3cm from the inferior margin- so quite close to both. It was sitting way out in the upper outer quadrant of my breast. And, since I'm fairly thin and had very small breasts, you could actually see it under the skin. I had 6 weeks of radiation with the last week being a boost to the surgical scar. There are still times where I wonder if I should have had chemo as well. But, overall, I'm satisfied with the decisions that were made. Life is good!

Montana, your happy thoughts worked great. My MUGA result was identical to the initial one. Huge relief there. My next step is supposed to be radiation, but the chemo has resulted in no more tumor to zap. I have an appointment with Dr. Sullivan at NOLA (breast reconstruction center) on Mar.15, and see what he has to say. My onc is not pushing an AI and I am absolutely fine with that. It is always a secondary line of defense. I would really like to keep rads as a back-up plan, too.

Too many d*mn decisions and you are right, Marianne, we end up walking text books by the time we are done.

I just read the reply from Sue.  I also had a tumor almost 5 cm.  It was also attached to the chest wall.  The onoc. and surgeon recommended chemo and radiation.  I had a masectomy in Jan.  Still have not had any treatment yet.  I was suppose to put port and start chemo and radiation a few wks. ago but canceled out.  Suppose to put port tomorrow and start treatment following.  I am still not sure if i am doing the right thing. Had the dx and it show low range.  Surgeon and Onco. said it was very agressive.  It was a grade 5.  Please give me some info if you can.

Hi Sue,

I agree it is a crap shoot.  My doctors all told me chemo was of no value to me since I had a Onco score of 9.  I too had single cells in one lymph which they figured came from the core biopsy.  It really scared me to read that but after 33 radiation treatments and 3 years of Tamoxifen, I feel like I have fought off the little buggers.  I'm a 3 1/2 year survivor living life to the fullest.