Wednesday, May 6, 2009

Surgical Oncologist # 2 update --- part 2

Doc #2 took us into his office and shuffled through all my paperwork, read reports, asked some basic questions to get up to speed…then he said,

“Are you interested in saving your breast?”

I was immediately perplexed. First of all, was this some kind of trick question? Is anyone not interested in saving their breast? But aside from the ridiculous nature of how the question was posed, all of my research thus far indicates that when there are multiple lumps of invasive cancer there is really no choice – mastectomy. And trust me, I searched, and searched for opposition to that opinion. And how. Boy would I like to hear some opposition!

So in answer to his question I said, ”Well, I am most interested in living as long as possible, with or without breasts.”

He seemed annoyed at my answer and said that went without saying. I bit my tongue in replying that the answer to his question went without saying as well. Um, yes, if I could save my breast I would. Can I just say, “duh!”

So, I am dubious.

(Incidentally, back to Doc #1 for a moment -- you know, that anti-breastfeeding-definitive-mastectomy doc? He said that when I went to NYC they would no doubt tell me what I want to hear, that I could have a lumpectomy. He had no idea where in NYC we were going mind you, he was making an indictment of every single oncologist in the entire city! Now, clearly that man had inferiority issues as an NJ doc. I’ve seen this before, doctors here in the ‘burbs resent us inquiring and thorough types going over the bridge to the city because we think it’s better. But frankly, I don’t have time for bridge & tunnel ego crap now!)

Okay, so anyway, the other thing I don’t like about this Doc #2 is he was pretty dismissive about some treatment methods that I am particularly interested in understanding…but more so this treatment approach would especially make sense if one were trying to save their breast -- so you’d think he would be on top of it.

See, apparently in some cases the trend is to do chemo first, before lumpectomy/mastectomy. The essential reason for this is that even with all the qualifying we can do of cancers now, like that mine is invasive, estrogen receptive, HER2 negative, yada, yada, there are still clearly unknown and perhaps highly individual aspects to each person’s particular case of cancer.

Now, if you give chemo before removing the tumors you can literally see if a specific cocktail of drugs actually affects the tumor because it will shrink. So, not only do you know that this exact cancer is responding to the chosen treatment, but afterwards you get to take out less tumor and surrounding tissue. If one were trying to save a breast, the smaller the tumor the better, no? And even if one weren't, knowing a little more for sure that any stray cancer cells floating around your body don't like this set chemo drug would be good.

However, then there is the issue of the lymph nodes. See, if the cancer has spread to the nodes then it might have spread elsewhere. That’s why they remove some of them, called the sentinel nodes, to biopsy them. Traditionally they remove them during the lumpectomy/mastectomy. But what if we do chemo first? Let’s say that my nodes were cancerous but only just barely…and then I did this preoperative chemo and it shrunk my tumors…it might also nuke the barely detectable cancer cells in the nodes meaning I wouldn’t know the cancer had been there.

The solution is to do a sentinel node dissection first – go in, remove them and check for cancer. Then do the preoperative chemo, then the lumpectomy/mastectomy, then...whatever else. This is a newer standard treatement, not some whacko idea, mind you. But I also want to be clear here…this is my understanding from my own research. I want the doctors to disagree with me if I am incorrect, I'm not approaching this with an attitude of knowing anything.

So, when I raised the question of preoperative chemo with Doc #2 he was incredibly dismissive and acted like what I was asking about was useless and a waste of time, yet couldn’t/wouldn’t really explain why. I mean, it does make sense when you read about it and seems to be a prevalent method so why act like I’m being silly? Silly? For crying out loud, I’m the one with the cancer here, I have a right to know this stuff and asking isni't silly!!!

In my opinion what I have experienced are the two opposite ends of the spectrum regarding women’s breasts and cancer according to the typical male physician:

Doc # 1 thinks, lop it off, it’s just a breast and why would you ever want to actually use it for anything, certainly not breastfeeding – how weird a thing is that to do with a breast.

Doc # 2 thinks that to “disfigure” a woman would be so traumatic and de-feminizing that any chick in her right mind would be willing to risk whatever it took, even her life, to keep her precious boob.

Clearly I’m looking for sensible answers here and not getting any. I don’t like that these two men have been so trivializing of my questions and seem unwilling or unable to explain things to my satisfaction. I am a relatively intelligent person, I could understand what they had to tell me if they deemed it worthwhile to explain.

Not for nothing, but how would anyone without my advantages…supportive husband, good insurance and a decent intellect…be able to navigate any of this???

We have our last scheduled surgical appt Tuesday, Doc # 3…she (yes, I said she) will hopefully be better, maybe even “the one”. If not, I’m thinking there will at least be a Doc #4…perhaps even a # 5. In the meantime I also have an appt Friday with a medical oncologist, also a woman.

Still, I decided to have this doctor #2 order some tests. The BRCA test to see if there is a genetic issue, the PET scan was done to help see if the cancer has spread, and I have an MRI script too – unlike Doc #1 this guy thinks it's still worthwhile despite the fact that I’m lactating (oh troublesome me!) Even though I highly doubt this guy will be the doctor for me, I can always get all these results and take them elsewhere. I thought getting started on the tests was time conserving.

So, that’s the doctor portion of my update. I’ll post some more stuff tomorrow. I’m frankly exhausted...and frustrated. But strangely…still hopeful. Or maybe it's just the Xanax ;)

Bye for now, and thanks so much again (and again, and again, and a thousand times again) for being there.

12 comments:

Sal said...

How infuriating and confusing. Here's hoping the next doc is more respectful and helpful ... fingers crossed.

notSupermum said...

Doctor 2 sounds dreadful, and not a good fit you at all. Give him the bum's rush, as they say 'round here. Surely to God Doctor #3 can't be any worse?

Keep taking the tablets :-) xx

Trace said...

Hi K, sorry I haven't been able to leave more comments lately, but I am definitely reading all your posts. So glad you're getting multiple opinions, even if these first two docs are a little wacked out. I can't imagine how confusing and crazy this must all be. I am thinking of you and continue to pray for you...

*Diane* said...

My prayers thoughts and prayers go out to you and your family Kayleigh. I cannot imagine how difficult this must be and i'm at a loss for words. i haven't known what to say for the past few days but i thought it was important that you knew that you remain in my prayers...

La Belette Rouge said...

I so hoped that this doctor was going to be the one who you liked and who was the right fit for you. I know when we underwent IVF I put up with a lot of ego to get the best MD and I also dealt with a whole lot of attitude. I do wish that doctors would get over themselves and understand the level of stress their patients are under. I have an unfair bias that women doctors are more understanding and sensitive.

Thank you so much for updating. You, as you know,are in my thoughts often. I send lots of love and hugs.

Kayleigh said...

Thanks Sal, thanks notSupermum -- it is frustrating but I just have a feeling "my" doctor is out there.

Trace & Diane - (hugs) I totally understand not knowing what to say...sometimes there really isn't anything to say. But just knowing you two and so many, many other wonderful people are thinking about me, that you care and are concerned, well, that's more than enough and means the world.

Thank you :)

Kayleigh said...

Thanks La Belette -- you put it all so well I have nothing to add, lol!

Long story but the most egotistical jerk of a doc was one that saved my DH's life once many years ago...like you we put up with it because we felt the care he gave was excellent. I'd do alot right now to feel like I was in "good hands" -- but neither of these guys felt quite like I would be.

Thanks for always understanding :)

Mervat said...

I think you hit the nail on the head. Regardless of what these doctors are like as people (or lack thereof!), go with the one you believe knows what s/he is talking about.

I have probably referred to this often, but when my 14 year old son was diagnosed with double major curves of his spine (my reason for blogging (!!); his curves were bad enough that he could have had spinal cord damage within 12 months) we saw the best of the best surgeons. And he was an absolute asshole, the worst of the lot. But, I think, in some wierd way his arrogance and determination with how good he was gave me confidence that my son would get through the surgeries. And, even though he was annoyed at all the questions that these 'medico' parents were asking (he even rolled his eyes after a couple of questions my husband posed) we were so glad to have gone ahead with him. Would I ever invite him over to dinner? Not on my life!

Chuck Dilmore said...

it's tragic that talent and bedside manner don't always go hand in hand. how can we entrust someone with our lives if they are flamers!

i am happy that there is a #3...
and i'm confident that she will give you the fresh perspective that you need and deserve!

healing vibes~
Chuck

Lorie and Melanie said...

Kayleigh--- Did a genetic counselor do the BRCA test? Did they go over all the implications of the BRCA test? Pending those results, it could change you treatment options... email me if you want more info, otherwise, a GREAT resource is facingourrisk.org This website really saved my sanity when my mom passed away. We got her positive BRCA test the day after her funeral. Having a compassionate genetic counselor was key in delivering the news-- and going over MY options as someone that was 31 and had a 50% chance of a BRCA mutation! Please email me if you have any questions about the BRCA component.... Much love you to on your journey, Kayleigh....

Anonymous said...

I came across your blog by accident. However, I am soo sorry to read about your situation. My mother had cancer three times and is a survivor so don't give up hope! Also, I am not sure where you went in NYC but please try Sloan Kettering. My mother went to other doctors whose opinions were horrific and were quite uncaring. She had bladder cancer - a non SK doc suggested taking it the entire bladder out. She went to SK and now today has her bladder. She found wonderful, compassionate doctors at SK. I hope your bad experience wasn't there.

You and your family will be in my thoughts and prayers.

Kari said...

I'm glad you are looking for a doctor that will be more willing to explain treatment options and not dismiss your concerns or your lifestyle. My relatives who suffered from breast cancer were lucky to share a wonderful physician and later the same oncologist who became very familiar with our family's health history over multiple decades of treatment, and the positive relationship really made the process much smoother & less painful. I hope that you find a physician who is a great match for you.