Recurrent Pleomorphic ILC

Nash, I just had a second reply from my onco when I mentioned the receptors. Here is her response again:

"

Re the alpha and gamma receptor issue, this is still very early basic science research. There is no currently available test for different receptors in the community oncology setting; this will probably take some years to be worked out.

As far as response by lobular breast cancer to tamoxifen, there are many women who have done well on that drug with that particular histology.

It seems that aromatase inhibitors are statistically more effective but this is also the case with invasive ductal carcinoma as well.

The other issue is side effects of the two drugs are different; some people can tolerate one and not the other. "

Hope you are doing well, Nash!

Texas, I am so sorry you had/have to endure this! I agree....why are they treating this in a similar fashion when everything is screaming that it acts differently. That's like treating a guy with prostate cancer for lung cancer. OY!

Scary, you had a BMX and a recurrence. How did they find it? My docs refuse any scans so I have no idea how I can see my chest wall. What if it is fermenting there and the docs are just waiting for it to present in an opportune place..for them!

Did they ever give your cancer a grade?

Thank you for responding. My onco included in her email (the part I did not copy when I posted to Nash) was that after 7-8 years, with a small primary tumor (and yours is smaller than mine!!) the risk of recurrence is (her words) "very, very low." Clearly not the case in both yours and Nash's.

Scary stuff. So you had bilateral mastectomy but would never have discovered it without it moving to your pit....I guess when I shave, I'm going to pay more attention.

My onco also said a glass of wine with dinner is fine. I have to think that at some point, maybe their headset is that quality of life is more important since it appears knowing what will or won't cause a recurrence is a freaking crap shoot. I drink my wine with dinner and have to say, there are times I give pause. Then I wonder if it is going to come back anyway....ugh...just a maddening position to have to be in. There was one blog which shut down--he was a radiologist/onco dept. and he posted that studies showed women who had cancer but drank actually lived longer....so I'm placating myself with the fact that if/when it comes back, maybe the booze may have fueled it, but maybe it will give me a better fighting chance, LOL. (this guy did not specify type of breast cancer...frustrating).

wallycat- There's no doubt a recurrence after 7yrs is scary for any other survivors to see. I was very lucky I had a lymph node that even grew large enough to feel, because unless the tumor inside a lymph node is over 4-5mm, they can't tell if it's cancerous bc the lymph node looks normal from the outside. Of course, finding this out made me immediately ask my onc how he'll ever know I'm truly done fighting my recurrence. He said "We can't tell for sure. It's just the way it is. There's people all over walking around with bits of cancer in lymph nodes that may never know they're there." Um, I don't know about you, but I didn't like this information in the least.

Annette- For what it's worth, the ooph surgery was a breeze, and as someone who took Tamoxifen for 3.5 years and was miserable, I'd take an ooph and AI any day. I had pretty bad joint pain for about 2 months after the ooph that worsened when I started Femara 3 weeks ago, but I'm feeling pretty good now. I take the Femara at night, use light weights for arm and hand exercises and stretching (where I had the most pain), and I added a supplement that honestly helped quite a bit even after one dose http://www.amazon.com/gp/product/B0013OSMRK/ref=oh_aui_search_detailpage?ie=UTF8&psc=1

Fingers crossed I'll keep doing well on Femara!

nash- I feel THE SAME WAY about my recurrence. I drank a lot more wine the 2 years before my recurrence than I had in awhile, so I really think I caused it (I was definitely more than a glass at a time for those of you wanting to keep enjoying your wine!). I began getting lazy thinking I was fine because I'd reached 5 yrs and fell off the health wagon big time! Obviously I won't be doing that again, just in case. I know little about the lat flap surgery, but when I had my BMX 7 years ago I was told because I'm thin it was my only option to look natural unless I entered a study to get the 410 implants I have now (they were approved a couple of years ago so all drs have access to them now). I have to say I'm so glad I really like the way my reconstruction looks (and am thrilled my drs were able to preserve it through all my treatments this past year- they did some amazing work). I think the key with the 410s is making sure they have enough projection and aren't too tall (mine are "MF" and look great). Anyway, something for you to think about… As far as local or primary goes, it's my understanding there's simply no way to be sure, but for me, mine came back in the same place and has the same pathology, so it's very unlikely it's new. As my onc said, "It would be weird if a new primary popped up so similar to your last cancer." Sorry if you've already mentioned this, but it sounds like they think your nodes are clear? So no ALND surgery? It would be great if you're able to escape the ALND; it's a bear of a surgery. I'm so sorry you're in the "whirlwind" phase and hope you find a clear path soon.

I remember a few years ago someone on the forum said we cannot donate blood or organs once we have the diagnosis even we might appear to be disease-free (due to the possibility of circulating tumor cells I assume). I asked my BS yesterday at the pre-op room as a random question and she said she wasn't aware. If the surgeon never heard of it, I guess it's not a real issue, right? (She directed me to ask the oncologist.)

I am sorry you are going to need more surgery but YIPPPPPIEEEEEEEEEEEEE on the good scan results and hope all the rest of the news is good going forward! Appreciate your updates. We always sit and wait with bated breath for results.

Hi ladies,

I don't feel like I fit in here anymore but I don't really fit in "anywhere". I thought I would let you know I'm having surgery on Monday to remove GI cancer in stomach and liver. It is all a little overwhelming. Once again, this is not breast cancer. I had to beat that down twice and now another one is after me.

Thanks,

Nancy

Nancy,

you will always fit here! Thinking about you and upcoming surgery and hopeful for great prognosis.

Thank you again for repeating that this is not a met situation but a secondary primary (is that the right phrase?).

((((((((((((((((((((Nancy)))))))))))))))))))))

Nash, I know that you must be relieved all was good on the scans. Friday I'll be thinking of you. Soon you will have much more information and the surgery will be behind you. Thanks for keeping us informed. Wishing you the best possible outcome. G.

Oh Nancy, my heart is with you. I hope it will all be okay. Nash, blaming yourself because you drank a bit more than you thought you should? Truth is we freaking just don't know why it comes back; so many women who don't drink at all have recurrence....self-blame probably isn't helpful right now, so be kind to yourself (:>) .

Wallycat, can you translate the article you posted about estrogen a bit for me? It really got my attention... I'm feeling particularly fuzzy, but I am struggling with my anti-hormonal (joint pain and terrible mood swings/fatigue/depression) and am either switching to femara or even considering stopping the tx. I am afraid to stop, but I've taken a 2-week arimidex holiday with my oncologist's blessing and feel so much better after only two weeks. Is the article saying that taking anti-hormonals can cause resistance to the med's positive effects after a time, and that estrogen in our systems actually helps protect us from some chance of recurrence?

Claire in AZ