Monday, May 18, 2009

updates, schedule, treatment, decisions

UPDATES:

As I mentioned last post I saw 3 more docs in two days. There was the surgeon from Sloan I already blogged about who said a mastectomy was IT. Then a highly regarded surgeon from NYU said breast conservation was easily possible (they don't call them lumpectomies anymore, fyi) though I found her a wee bit vague on things like final appearance and nipple function. When I asked about that she said, "Do you mean like reacting to cold?" Um, no, that's NOT what I mean. I can't possibly be the only woman to care about, you know, THAT, can I?

I'll try an blog in more detail about her another time, if only for my own memory's sake.

There was also a medical oncologist who was MOST helpful -- and lucky me she's at our local hospital, only 15 minutes away! I'll get to her later.

So, for anyone keeping score, here's the tally:

2 surgeons say mastectomy, Englewood NJ & Sloan Kettering NY
2 surgeons say breast conservation, both NYU but from different offices
2 medical oncologists say either way, not an issue cancer-wise, Englewood & local hospital

SCHEDULE THIS WEEK:

So, I'm seeing one more surgeon (yes, I'm thorough) -- this one is a woman from Hackensack, a well regarded hospital in NJ.

But I'm also adding two more docs to the line-up -- both plastic surgeons. The one is from NYU and another from Hackensack. Oh, and I also have an MRI this week.

Busy, busy, busy. Who knew cancer was so time consuming? I need a secretary.

TREATMENT STUFF:

So, medical oncologist from local hospital was really nice and knew her stuff, answered a ton of questions, made my situation MUCH clearer to me -- plus it all jived with what the first medical oncologist said. The only caveat is she, like most, didn't get the whole breastfeeding thing. ("Really, a two yr old? Gee, I barely lasted six weeks with my kids!) Whatever. Besides, since I also liked that other medical oncologist from Englewood, I can always double check them against eachother in terms of second opinions on post-op treatments.

DECISIONS:

Breast conservation with radiation or mastectomy without radiation. That's standard. Whether I have either surgery does not impact my need for chemo whatsoever. It's my sentinel nodes that essentially do that.

It seems that it is my decision in the end. Truly, the survival rates for both are the same with my cancer profile, despite various docs personal leanings. What will help me make my choice is knowing/understanding the possibilities of these four things about each option, in order of importance to me:

nipple function (for breast conservation only)
recuperation
cosmetic appearance
future monitoring (more for breast conservation)

My thinking right now so far is that if I'm likely not to have nipple function and if recuperation is the same for each surgery then just take the whole thing...the skin sparing mastectomy pix I've seen look amazing, even the faux nipples look pretty good. But if there's any chance of my nipples working or if the recuperation is way more difficult with mastectomy....then I REALLY need to think some more.

As to chemotherapy:

If my sentinel nodes are clean (and they all keep saying they will be) then my tumor is sent to Oncotype. Oncotype does this genetic assessment of the tissue itself and comes up with a score. If I score low, then no chemo. Of course I'm assuming there's a borderline and heck, with my luck I'll hit it. So no matter what score I get I'll be looking for multiple opinions on my need for chemo, rest assured.

But wait, there's more!

MORE TREATMENT STUFF:

I will need hormone suppression therapy of some kind since my cancer is estrogen receptor positive (ER+). The standard treatment for pre-menopausal women is Tamoxifen for 3-5 years. Problem is I can't take it, blood clot risk too high for me. So, the only option is Arimidex and what they call "ovarian ablation" -- in short, shutting down my ovaries. This can be done with a monthly injection or by removing them, known as an "oophorectomy".

I cannot help but feel in my gut that if I went the drastic route of oophorectomy and instant menopause then maybe I could forgo the Arimidex. Yet even when your ovaries are gone there's still estrogen in your body. Needless to say I need to do ALOT more research, but there's time for that after surgery....up to six months at least from what Sloan Kettering doc said.

The reason I would like to forgo the Arimidex and would consider oophorectomy is, yup, you guessed it -- nursing. I can't nurse on hormone suppression drugs. But if I had no need for chemo, and if I removed my ovaries and could skip/postpone hormone suppression drugs, then I could resume breastfeeding Daniel.

If I can't, I'll have to let go of that. It will be excruciating -- for me. Daniel is doing fine. Every once in a while he mentions it, but he doesn't seem sad...it's like he's just checking. I keep pumping...just in case. Giving that dream up totally will be hard and I will mourn. But I do know the proper perspective here. Unless my MRI shows something bad, unless my sentinel nodes are cancerous -- I GET TO LIVE!!!!

In the end, that there is no end yet, is what matters most.

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So, there ya have it in a rather large nutshell. I'll be busy this week and will do my best to post. I've emailed some of you lovely people, long overdue I know...and I've got more to send out if you are one who hasn't heard a reply yet. Either way, know that my gratitude is deep and my love is strong.

Thank you!!!!

5 comments:

Alison said...

Sounds like you are almost there. Great job researching. I'm glad to hear that Daniel is doing well without being able to nurse. Sounds like it has been much harder on you. Sounds like your spirit is in a good place, I hope for the best for you and your family. Take care and thank you for sharing your journey.

notSupermum said...

That's an awful lot of stuff to take in K, and I'm not sure I even understand it all. I am amazed by your resiliance, and the determination to research this so thoroughly.

Good luck, and I'll be thinking of you x

Jane said...

I agree with not supermum. Have you seen Mervat's lovely poem?

La Belette Rouge said...

You are a tower of strength. And, yes, tower of strength often cry and need Xanax. Hugs to you,lovely. Please know I am thinking of you.

Ilyssa said...

My mom has had 2 mastectomies and is doing well now. Obviously it's a very hard time, but in the end, you do what you need to do to live. You are doing a great job of researching and being your own advocate.