Confusing MRI results. Now more testing.

Hi Leydi,

I am sorry that you did not get definitive answers, but not totally surprised. My surgeon repeatedly stated what she thought was true only to have the outcome be slightly different. I believe that ILC is tricky in many ways. My MRI did not show the cancer in my other breast or the nodes. It might take a little time to nail down specifics, but most ILC is notoriously slow growing. That should be reassuring while you wait for test results.

I am impressed that both you and your surgeon agreed upon the BMX -- many medical professionals tried to convince me that BMX was "not medically necessary". The surgeon who eventually performed my BMX tried to talk me into a third surgery for re-excision... after my BMX and the discovery of cancer in my other breast, he conceded that I had made a good decision for myself. You seem to have made this decision early in the process -- saving yourself from the need for multiple surgeries. Have you considered SLNB vs ALND? If you have a PET scan, will it show clearly how many nodes are involved? I had to have an ALND to determine chemo, but I do think if they know that you have bilateral cancer they lean toward chemo... it seems tricky. My oncologist told me that the genetics of my tumor indicated that I would not benefit from chemo. She said slowly dividing ILC would not respond well to chemo. If you have a more aggressively growing tumor, chemo might be very effective? I know that many some oncologists consider neoadjuvant chemo (before surgery) so they will know if the treatment is effective. Some women have neoadjuvant treatment with hormone therapy. There are specific chemo's for HER+ cancer (perjeta and herceptin -- think that one of these 2 is predominantly used neoadjuvantly); so, you would need to know that status before proceeding? The biopsy from the node will hopefully be taken from a more solid tumor and thus provide more tissue? I also waited on reconstruction for treatment reasons -- I still have not chosen to reconstruct yet.

I feel like everything that you have shared makes sense for ILC. My tumor was described to me as a spider's web... You should not be surprised if the tumor ends up being larger -- imaging of ILC is not always clear. I personally would ask for the oncotype to be performed if you are not HER2+, because the report has many details about the genetic make-up of your tumor. My oncologist knew that I had cancer in both breasts but still did not think chemo was the best treatment for me... And, my oncotype score was low. At this point, it may be reasonable to contact an oncologist? You will want an oncologist's opinion on these treatment options, since they are the experts in this area. I started with Tamoxifen (pre-menopausal) with Lupron to chemically shut down my ovaries -- hated the SE of Lupron so I had my ovaries removed (relatively easy surgery for me). Then, my oncologist felt it would be best to try the AI's (Soft Trial Report came out and indicated AI better for Lobular). Had trouble with my leg swelling on each of the AI's as well as intense joint pains. So, I returned to Tamoxifen. She felt it was not a big deal? I will do an AI after Tamoxifen (maybe 5 years). Some women with Lobular do take hormonal therapy before surgery; however, I believe most of them have larger tumors.

Ok, sorry that I rambled. It's late and I wanted to post before I leave for my nephew's wedding tomorrow. I hope that you will sort all of this out quickly. The authorization of the PET scan could take some time but the scan would provide great information? You sound like you have a good handle on all of this. Take care.

Leydi - I'm sorry that you find yourself here. I too am impressed by the speed at which you are getting your appointments and having tests done but I want to express to you that it's okay to slow the process down a bit so that you can process everything that you've learned and make the best possible decision for yourself!

I would insist on seeing a medical oncologist before making any treatment decisions. A breast surgeon, no matter how familiar he is with BC, should defer to the medical oncologist when it comes to chemo and antihormonal decisions. It is true that it is less common for women with ILC to have a complete response to neoadjuvant chemo but there are women on this board who have had their tumors shrink considerably. In general, Her 2 + tumors respond favorably to chemo with Herceptan or perjeta neoadjuvantly and I think that Her 2+ tumors are more frequently treated with chemo prior to surgery. There is currently a study, I believe in Pittsburgh, looking at treating women with ILC with neoadjuvant AI's.

I had read a study when I was diagnosed that suggested that ILC responded better to AI's then Tamoxifen and,despite my MO telling me it wasn't necessary, I had my ovaries removed between chemo and radiation so that I could go on Armidex instead of Tamoxifen. I'm not recommending that you do this but I have never regretted it. A summary of the study can be found at the link below:

http://www.ascopost.com/News/31718

You're in the most difficult phase of the BC odyssey. Take your time coming up with a plan that you are comfortable with!

Please get a medical oncologist on your team sooner rather than later. This plan needs to be coordinated by a team. Discuss with the medical oncologist the chemo question, tamoxifen vs. aromatase inhibitor for ILC, the order of your treatments, etc. The SOFT trial did show a benefit to OS plus aromatase inhibitor over tamoxifen alone for premenopausal women whose cancer warranted chemo. That said, I think the doctor has a good point that if you do need chemo, it may cause permanent chemopause because of your age. If that happens, you won't have to decide about oophorectomy or suppression. For me, even though I had a very low chance of recurrence, tamoxifen was an epic fail. That's just me, but I wish I had followed my intuition in 2012 and had an ooph so I could go on an aromatase inhibitor, like toomuch did.