Wednesday, May 13, 2009

Surgical oncologist #3 -- not all good news

(Note -- originally I wasn’t going to mention actual hospital names…privacy reasons or whatever. But once again I open the book of my life a little more, in case someone reading this ever needs this info -- eventually I'll come back and include actual doc names. I feel like I'm leaving a trail of breadcrumbs.)

I am very sad, and feel like I’ve been hit by a truck. I really like this doctor, I mean, she was by miles the best so far. And I might as well mention, she was also from Sloan Kettering, so there’s a reputation behind her too. She was warm, personable, and compassionate -- and more importantly seemed highly knowledgeable, thorough and distinctly well informed. That’s why what she told me made me so sad.

She said I need a mastectomy.

When pushed, when I asked her if she would refuse to do a lumpectomy/quandrantectomy on me as 2nd surgeon said he would, she said that she in fact would be unwilling to do it...she said it nicely, but she said it.

According to her, although the chances of survival are the same for lumpectomy, quadrantectomy and mastectomy, the chance of local reoccurrence would be 20% without a mastectomy. That means that the cancer could come back but that it would be confined to the same breast (btw, a chance of my other breast ever having cancer at some point in my life exists, but it’s like 10% or less).

Now, she said I could be vigilant, get my mammograms and other testing to catch a reoccurrence early, etc. But that because I am so young & pre-menopausal she would rather see me eliminate any odds of it coming back. She said, “You have young children, a nice husband and a good life, I want you to have a nice long time with all of that.”

She also feels that breastfeeding in a sense contributed to why my lumps are multiple and far apart. Let me be clear, breastfeeding didn't give me cancer, my body did that for unknown reasons. But that it did so during lactation has perhaps worked against me. Since my milk ducts are in effect “open” things may have been able to travel easier. I am dubious about that part since breastfeeding is supposed to protect you from cancer for almost the same reasons.

Anyway, she believes there is a good chance that in between these two lumps the duct may have more cancerous cells in situ, meaning still in the duct (not invasive like my lumps themselves are). Because of this she thinks that they’d have to take more than a quarter of my breast anyway. Oh, and in her opinion one of the tumors is close enough to my nipple that it would have to go in a quandrantectomy too. She was clear – a mastectomy is the way to go. I am a good candidate for a “skin sparing” one with reconstruction.

She agreed that I might not need chemo, but she couldn’t say definitively of course until the tumors are out and they do a sentinel node biopsy. She did say they are more likely to do chemo in younger, healthy women like me. Aren’t I lucky.

As to my lymph nodes…each and every doctor has felt me up quite thoroughly and none have found any swollen nodes. I knew this was good, but didn’t put much stock in it because it’s just a human hand, not a diagnostic test. But she said she is fairly confident that my nodes will be clear after biopsy – something that was GREAT to hear. That means the cancer wouldn’t have spread anywhere else in my body. It means I probably get to live a long time. I am trying really hard to embrace that as the main point here.

So to sum it up:

Surgeon #3 -- Sloan Kettering: Mastectomy, maybe chemo post-op, no radiation and she thinks my nodes will be clear and I’ll be BRCA negative (the genetic counselors think that too, btw). I like her. She said I could probably wait to do post surgery hormone treatments and breast feed for 6mos or so, assuming no chemo. (which I’ll post about another time, it’s not really ideal)

Surgeon #2 – New York Univ Hosp: Used the word Lumpectomy, didn’t address chemo other than to scoff at my pre-op question, didn’t think I’d need a plastic surgery consult even tho it would be a rather large “Lumpectomy” (though I would have gotten one anyway). Radiation was not definitive to my recollection. Didn’t like him much, didn’t hate him, but didn’t feel totally trustable.

Surgeon #3 – Englewood Hosp, NJ: Said chemo definitively, maybe pre-op, said Mastectomy definitively, wanted to dry up my breast milk with a drug that would be dangerous to me and was an all around jerk. NO WAY.

Medical oncologist #1 – Englewood Hosp, NJ: Agreed a lumpectomy of sorts could be possible, thou he’s not a surgeon…he said it would be more like a quandrantectomy. He said radiation without mastectomy, but maybe no chemo. I generally liked him.

I have one more medical oncologist appt already scheduled; it’s at my local hospital.

A couple wonderful people on a message board I frequent (the Weightwatchers Veggie Board aka VB) have given me some local doc names, we’ve been making phone calls.

Two out of three surgeons so far say Mastectomy. I should probably just face that, and maybe I will. But I can’t help feel in my gut that I need to hear it again from at least another doctor I trust before I quit trying to save my breast.

I feel less hopeful about avoiding an ordeal, and that scares me. In fact, I feel pretty damn down. I do feel grateful that my life seems so far not to be in imminent danger and am trying to focus on that. When I think of my kids that’s easy, it’s all there is. But when I look in the mirror…not so much. Someday my kids won’t be the sole focus of my life, I do know that somewhere in back of my present “mommy-brain”…so how will I feel about my body then, when it’s just me (and Michael)? This is the hardest thing I’ve ever had to decide. How do you do this??? Have I done enough to be able to figure this out?

PS: since completing the writing of this I have an appt TODAY with another doc at NYU hospital -- in fact I'm hitting publish and walking out the door. Will post again tomorow with news.

Love & gratitude beyond words to all....


Jean said...

Obviously the decision over which oncologist is going to be a tough decision for you and Michael, but I would always go with instinct. You clearly sound much happier with this doc, even when she didn't tell you what you wanted to hear (lumpectomy v mastectomy).

I've heard once before that male oncologists/surgeons are keener than their female counterparts to save as much of the breast as possible. I can only imagine they are looking at it from a male perspective to a degree, rather than a medical perspective. I may be talking complete rubbish, but it's an interesting theory.

Good luck with this latest doc. I'm really rooting for you K, much love to you. x

La Belette Rouge said...

You are still in the information gathering stage( and good for you for getting so many opinions) and the bad thing about this stage is that there are so many opinions and it is hard to make sense of the differing opinions. You will though. I know you will.

I am so sorry that this last doctor didn't share the opinion of the one before that.

I am thinking of you and sending love and hugs, as always. I hope that this doctor you are seeing today brings greater clarification.

Sheila said...

Hey, Kayleigh - have had limited computer access to keep track of what's going on with you, but have been directing people to you to pass on good vibes.

IMO, you sound in control and in a pretty good state of mind (all things considered). A breast is a breast, and if that's what has to go, at least you'd still be with us. Go with your gut and pick the doc you trust.

Hang in there, chick. We're all thinking of you.


Anonymous said...

Kayleigh, from what you said today I can only help but think, Lose the breast, but save your life. You can keep shopping doctors and surgeons forever until you get the one who says the right thing, but what does your gut say? I bet you know you should go for the mastectomy. Kill this thing. Now. Recover. Raise your babies with joy. You CAN DO IT!!!!!! I am praying so hard for you. I know you're not a Christian, but really, if you cry out with your heart to the Lord, he will hear you! If you don't feel you can reach out to him right now, I will be there to do it for you. Hugs of comfort, Karen

Mervat said...

Kayleigh, I agree particularly with notSupermum and La Belette. go with your gut instinct.

As for the berastfeeding, I personally (and I may even have a little scientific backing) this may have saved your lymph nodes. If you are breastfeeding and increased blood supply is favoured towards the nipple then this would have 'fed' cancerous cells that were there, rather than stimulate or 'feed' any that may have popped up further back into your breast and arm pits. So, for me, breastfeeding psobably saved your nodes (hopefully the nodes do come back clear).

I also completely agree with nonSupermum about the male/female surgeon perspective.

If one of your breasts, must go and you can reconstruct then let it go. I know this is certainly easier said than done and i ma not in htat predicament. Women in their early twenties are having surgical augmentation to both of their 'perfect' breasts. If, in the interest of not going through this again and in the interest of survival, you need to augment / reconstruct one breast, then for me the decision would be easy.

Remember, when the kids have grown up and it is only you and Michael, you would have survived, and *living* your wonderful years together. Is that not more important?

Jane said...

I am no medical expert but I think you should trust your own instincts.
You seem to get so much more information than we do in the UK.
I like the idea that your number 3 doctor treated you as a whole person and not just another case.

Imogen Lamport, AICI CIP said...

So sorry to hear about your diagnosis. I lost my mother to cancer as a 5 year old. My instinct is to lose your breast and save your life - which in the end is more important? Your kids will thank you for it when you're still around to watch them grow up.

A very had decision I know, but I would think time is of the essence too.

Good luck with whichever road you choose and hoping for a speedy recovery.

WendyB said...

So sorry to hear you're going through this. I must say that after seeing my friend Melissa go through multiple lumpectomies due to multiple tumors, I decided I would opt for the mastectomy if I had a similar condition. Before seeing her ordeal I would have said I'd do anything to avoid a mastectomy but I think what she had to go through wasn't worth it. By the way, she's a nurse herself and is very willing to talk about her experiences. She just finished treatment very recently. If you want me to connect you to her just let me know via wbjewelry at hotmail dot com.

Chuck Dilmore said...

you are worth the research.
you are worth the opinions.

your spirit guide is strong, but gentle.
she only whispers, but you are attuned...
you will make the choice that's best for you.

and you are loved...
your family, your followers.
we hate your pain but already see your healing.

the healed you is already here. present.

all in peace~

Unknown said...

Hi Kayleigh ...
I think it's AWESOME that you are getting different opinions from different doctors. One of our dear family friends who was diagnosed with cancer did this too, and it's made a world of difference. I wish I could offer more perspective on this journey, and I feel helpless sometimes that I can't be more helpful! But I think about you every day and feel strangely confident that you'll make it out okay (I have this weird sixth sense that pops up, all of a sudden), so I definitely sense a proverbial "light at the end of the tunnel" for you ... even though it might be hard to spot from where you are now.

You are always in my thoughts and prayers. Sending you many many positive vibes! :o)

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