Monday, May 11, 2009

First Medical Oncologist Appt -- update

Okay, this guy, I kinda liked, at least way better than the others so far (which I guess isn't really saying that much, is it, lol?) Oh, and I thought it was a woman but was mistaken.

Anyway, he explained things to me, didn’t mind my questions, and was at least remotely personable. He’s not a surgeon, but he would be the one directing my actual treatment and after care beyond surgery. And although not a surgeon, he certainly has enough experience to know what is likely possible surgically speaking.

Let’s start with my interest in doing that pre-operative chemo stuff. He says it’s not necessary or applicable in my case because as tumor size goes, mine aren’t colossal and therefore it wouldn't help conserve any more breast tissue by making them smaller. The amount of breast I lose has more to do with how far apart they are and what else they might find when they get in there. And since my tumors aren't being pesky and bothering any organs, there's no need to shrink them off of other tissue, either.

Ok, see, now THAT I understood. How hard was that to explain to me?

Now, as to that other reason one might want to do pre-op chemo, which is to see if a particular blend of chemo drugs works on murdering your specific tumor cells. Well, here’s where the guy TOTALLY blew my mind – depending on what they find out about my tumor I might not even need chemo!

Did you see that? It was my head spinning.

There are instances when the advantages from chemo are so minimal in early stage breast cancer (I am presently classified as Stage one based on what we know so far) that the detriments might out weigh the possible benefits, according to this doc.

Apparently there is some pathology lab assessment method thingy that they use to analyze the benefits of chemo***(see below for explanation) according to chance of reoccurrence in a specific individual, measured by percentages. In simple terms they plug in all the detailed info they have about your individual cancer and develop an assessment to come up with your treatment plan. We have some of the info already, but the last few key factors can only be gotten from the tumors themselves after they are out of me…frozen sections are tested up the wahzoo (how do you spell that?). Oh, and this isn’t something special this guy does, this is a standard practice to my understanding. (it is standard if you are node negative)

But the point here is this: depending on how aggressive this tumor looks under this type of analysis, and assuming my lymph nodes are clear (please be clear, please be clear) and still further assuming I am BRCA negative (please be neg, please be neg) and the MRI shows no other growths…and finally, assuming they get clear margins after whatever breast surgery I have…I would probably not need chemo therapy.

I know, that’s a lot of assumptions.

As to the surgery itself…like surgical oncologist #2 this medical oncologist thinks that a sort of lumpectomy could possibly be done instead of a full tilt mastectomy, which surgical oncologist # 1 said was mandatory/standard practice under my circumstances. But this guy thinks my surgery would probably end up being a little more like something in between a quandrantectomy and a lumpectomy.

Did you ever guess there were this many “ectomies” in breast surgery?

A quandrantectomy in my case spares the nipple (yay!) and basically you lose about ¼ of your breast…tho it might be less than that with mine, depending on some of the above test results and what they see when they get in there…maybe more like 1/5th. There are cosmetic things they can do to even you out, which I’ll need to research ASAP because they usually have to be done BEFORE radiation…oh, did I forget that? If I do not have a mastectomy I will absolutely need radiation. I think I can live with that, not a prob.

As to hormone therapy after all this…that’s the norm when you have estrogen receptive cancer. They want to suppress your estrogen production so the cancer has nothing to “eat”. If you are pre-menopausal, like me, you usually take something like tamoxifen for 3-5 yrs. If you are post-menopausal you take something like arimidex.

Here’s the problem: tamoxifen causes a big fat risk of blood clots to someone like me, as I’ve mentioned, I’m a thrombophilliac. It’s not advisable for me to use this drug, in his opinion. What would be my best bet would be to have my ovaries removed and go on the arimidex. Still a risk of blood clots, (I think?) but reduced enough that I wouldn’t need to take blood thinners beyond the aspirin therapy I already do (181 mgs/daily)

Okay, so to sum it up: maybe save a good part of my breast, maybe no chemo, but I lose my ovaries. I’m wrapping my mind around it still but it sounds kinda better than what I've heard so far, right? Now I just need the next docs to confirm this all so I know this guy isn't some renegade, lol.

Here’s the funny thing, funny being a relative term nowadays…if my nodes are clean, if I’m not BRCA positive, if I don’t need chemo and if get to keep a bit more than ¾ of my breast – I swear, I’d be the happiest freaking woman on the planet!!! I mean, you’d hear me laughing and whooping it up as if I won the lottery. Seriously. I’d be totally into having a major party, that’s how friggin fraggin happy I’d be.

I am a little afraid to hope, and yet there it is, tucked in the corner of Pandora’s little box.

If you’d asked me 2 months ago what would make me happy it would have been a whole different answer. But you know what? I kinda secretly suspect that whatever it would have been actually could not have made me nearly as happy as if my new dreams do come true. Happiness is different now. It’s just not the same…and in some ways it’s potentiality is actually stronger, deeper and maybe even better than before.

Who knew?

PS: tomorrow I see the third and final surgical oncologist appt, in NYC. Might not post until the next day. Wish me luck!

***this assessment is a 21-gene recurrence score assay commercially marketed as Oncotype DX™. It may be useful to select those women with ER-positive, node-negative early breast cancer who stand to benefit the most from chemotherapy. This test, which is performed by a pathologist on a breast tumor specimen, uses unique features of an individual woman's breast cancer (expression of 21 different genes) to estimate her risk of a cancer recurrence. If the recurrence score indicates that the patient is in a low-risk category, endocrine therapy alone may be sufficient. For women whose recurrence score puts them in a high-risk category, chemotherapy followed by endocrine therapy may provide a better outcome.

9 comments:

Brenda said...

It sounds like you got really good advice from that doctor, I'm so happy for you. I opted for chemo before because my tumor was large, but its shrinking under the chemo (hurrah!) and because I want breast conservation, like you.

I am also considering the ovary removal, just to be on the safe side. Some things I have read says it reduces the chances of reoccurence by 50%, I like those odds.

I hope you don't have to have chemo, its not fun, but it is survivable.

Kayleigh said...

Thank you Brenda! Do you mind me asking, how large your tumor was/is?

I am so happy to hear the tumor is shrinking, that IS really great. Congrats :) And thank you for the comforting words re chemo...if I do have to have it I hope I can handle it as well as you seem to be.

Thanks again :)

notSupermum said...

More good news? How fantastic! And your at stage one, which is good too. I've still got everything crossed for you Kayleigh (which makes it difficult to do certain things) and I'm sending you positive thoughts everyday. Good luck with the next doc. Stay strong xx Check your blog email please!

evanadine said...

so wonderful to hear some potential good news! it sounds like this doctor is much more in the same vibe that you are. as always, good luck, best wishes, and my thoughts are with you and your family.

Laurie said...

Wishing you tons of luck and sending major VB vibes always.

Laurie from the VB

Jane said...

Take Care. You have a lot to cope with.

La Belette Rouge said...

I am so happy to come here and read good news for you. I know it isn't the news you wished for a few weeks ago but relatively it is great news.

Your strength and spirit continue to amaze me.
xoxo

Chuck Dilmore said...

every day
the most positive,
healing vibes coming to you~

Chuck

Karen said...

Oh Kayleigh, I'm just catching up here and I've read all the posts and am just so sorry you have to go through this right now. Go ahead, take Xanax when you need it, the anxiety must be hell. Well, you've got us out here in the blogosphere who are pulling for you. I will pray my guts out for your fast recovery. Hugs, Karen