Thursday, April 30, 2009

Surgical Oncologist # 1

Bottom line: mastectomy, chemo, and perhaps radiation too.

I just got back from my first appointment with a surgical oncologist. These are the facts he presented as I understand them. Along with updating all my wonderful friends it is also a means of keeping track of what each doctor tells me in once place – aren’t you all lucky you get to read my new cancer notebook. If anyone actually reads all this and sees something I missed or has a question PLEASE feel free to say so – the more eyes the better.

Because the tumors are far apart, large and multi-focal he recommends a mastectomy, with reconstruction if I choose.

It is possible I may need chemo before the surgery to shrink the tumors. New preliminary studies have shown that increases survival rate with tumors of a certain size. I will need chemo after the surgery. NOTE to self, if I have it before do I still need it after, too – I think so, but double check.

He felt more masses, tho obviously they didn’t show up on the mammogram or ultrasound. For them I need a fine needle aspiration (not the same as the core needle biopsy I had, so my understanding is they feel more cyst like – forgot to ask if the fluid removed is biopsied, NOTE to self, remember to find that out.

An MRI was advised initially to pick up anything a mammogram might have missed, except according to an MRI expert he asked since I am lactating even if I stop nursing today it takes months to “clear up” and therefore an MRI is useless for now. I’m wondering if there’s a fine line between totally useless and just not as accurate. NOTE to self, remember to ask next doc that.

My cancer is estrogen receptive – apparently that was in the report but we missed it. That means my ovarian function needs to be permanently ceased, either thru drugs or removal. Instant menopause. He clams this is good news, as with suppressed estrogen it puts odds in my favor in terms of reoccurance rate after mastectomy and treatment, barring other as yet unknown factors.

The Her2 test results, to see if it’s an aggressive growing type of tumor, has not come back yet. NOTE to self, make sure we get that from the lab ASAP.

He wants me to contact a gynecologist to get a medication to dry up my milk. Instant weaning. Apparently, according to him, the hormones involved in the process of making breast milk may influence the growth of the cancer. I asked him if I could at least take two weeks, and he said yes, that would probably be okay. Then I asked if I were his wife what’s the longest he would advice me to take to wean my son, to which he replied, “If you were my wife you wouldn’t still be nursing my two and a half year old son” Asshole.

I have a phone call in to a lactation consultant; I’m wondering if this medication that dries up the milk would still allow Daniel to suckle – even if he gets no milk out. During toddler hood they get very little actual milk anyway, some, but not necessarily cups full, more like a spoonful here and there…so much of it is habit and comfort and bonding. I’m afraid to hope.

I’m also wondering if by some miracle when my breasts no longer make milk if he could even suckle on the remaining one whilst I undergo chemo – assuming there’d be no danger of chemicals being transmitted thru a milk-less breast. That might actually help him wean less drastically. I’m afraid to hope for that, too.

The doctor used the word cure. Assuming the cancer wasn’t beyond the lymph nodes. That won’t be known until the sentinel ones are removed (that’s the first few) If cancer shows up there they remove all of them. Assuming cancer isn’t in all of them, the word cure is the one thing he said that made me not want to punch him in the face. That and, despite his attitude towards breastfeeding, he seemed to be extensively knowledgeable and very informative.

However, unless somehow the other two surgeons are infinitely worse, this is not my doctor. Even if I go with every protocol he suggests, it just didn’t feel 100% right.

There’s more….thoughts and feelings. But I can’t go there right now. Frankly I am so tired I just want to some Xanax to take the edge off.

I will post again, soon.


Kendra said...

Kayleigh... your bravery amazes me. I would not be holding it together as well as you. You are a straing amazing women and you CAN and WILL do this!

One other thing you might want to ask about is if they thinks it's a hereditary cancer. They may have already said. But if not, you may be able to get tested to see if you carry the BRCA 1 or 2 gene mutation. This is important to know for your children.

My family carries a mutated gene that causes breast and prostate cancer (not the BRCA 1 or 2 though, it's gene of "unknown significance"). I got tested and luckily don't carry the same gene, but it was a big deal for me to know.

Anyway, I keep checking often and in today's blog post I asked my readers to send their thoughts and prayers your way as well.

With love!
-- Kendra

sallymandy said...

Oh, dear. Even though I've not been commenting every day, I'm following you every day with everything that happens. What to say? Take that Xanax if it makes you feel better (though when I took some of that when my baby was a baby, I was told I had to stop breastfeeding..?) You have many friends out here who care and support you. Be kind to yourself.

sallymandy said...

I mentioned you in my blog this week too, like Lee. xo

Jean said...

Kayleigh, I think the comment about you breastfeeding your son was out of order. He should have kept his opinion to himself and just answered the actual question you asked. Eejit!

I'll be thinking of you this weekend, it's funny how often I do think of you actually. I would never have imagined I would be so concerned about a woman I had never met or even talked to! Strange how life works sometimes.

Sending you positive thoughts. x

Chuck Dilmore said...

healing meditations
of every Follower.

you are loved.

Mervat said...

Oh Kayleigh. So much to digest from one single visit to a #%*@$ specialist. You have so much on your mind. Just keep focussing on that one word. CURE.

Having been in the medical field and having a husband who is a cardiologist I have certainly met quite a few assholes, especially socially. The sad thing is I and my hubby believe these jerks know it and are proud of it. But if you are lucky enough to be in the vicinity of three knowledgeable oncologists then you choose who you are happy with.

As for weaning, the chemo drugs will definitely be in whatever breast milk or fluid is there. An alternative to b/f sweet Daniel maybe having lots of cuddles? I am sorry I don't have any other solutions.

All my love and prayers to you and yours.

Academichic said...

I came to your blog from Kendra's and just want to wish you all the best as you go through this! You will come out stronger for it and I wish you and your family much strength over the next months as you tackle this!


Anonymous said...

i came across your blog a little while back through kasmiras blog.
im so sorry to learn of your recent diagnosis. its not the sort of news anyone ever hopes to receive.
it is clear from your blog that you are a strong woman. many women have beaten this disease, and you WILL be one of them. you will fight it, and you will win.
youve got a built-in support system with this blog -- both friends and strangers.

i wish the best for you and your family in your upcoming battle. its an uphill fight, but we are all here for you.
you can DO it!

La Belette Rouge said...

NO! In three months I have two friends with the same diagnosis and I can't believe it is happening to either of you.

I am unable to put into words right now all that I feel other than that I am soooooooooooo mad, angry, sad and outraged that LOVELY YOU has to deal with this. I send hugs, love and all good thoughts.

Your strength, love, and spirit as well as family and friends will get you to the other side of this mountain.

Much love.xoxoxoxox

Brenda said...

So sorry to hear about your diagnosis. I have infiltrtating ductal carcimona, stage 2, and have already started chemo, doing it before surgery. The way I understand it, is that you only do chemo once, either before or after. I chose before because I want to kill those cancer cells, especially if there are any others circulating in my body.

I'll be watching to see how you do.