Tuesday, April 28, 2009

Doc appt (Doc 1 of 2)

Went to see the surgical oncologist today (will see medical oncologist tomorrow). Most of what I'm posting I already knew, but wanted to get full info before sharing. Here it is:
--Drain removal
--I thought I was getting my drain out today, but they say I am still producing too much fluid. They will check again tomorrow since I'll be up that way anyway. It hurts and is annoying as hell so I really hope it can come on out. Memphis in May (KoRn, YAY!) will really suck if I still have it in.

--Swelling in hands, feet, underarm
--The swelling I'm experiencing so far is normal.
--They are going to set me up with a lymphedema specialist now, because I have a high chance of developing it, so that I will know what to do.

--Pathology results after surgery
--Tumor: originally greater than 7 cm, what we could feel shrank, but the entire original area (expanding into all 4 quadrants of my breast) was cancerous. It was removed with basically clear margins, meaning they took all that cancer out.
--Lymph nodes: removed 10, 9 were positive for cancer. This is a big finding, which I will discuss further below.
--Lymphovascular invasion present and multifocal (lymph nodes and vascular, or blood vessels)
--Largest lymph node metastasis is 1.3 cm

--What that means as far as how chemo went:
--Didn't kill the cancer in either the breast or lymph nodes
--It is possible that there was smaller cancer elsewhere in my body that we didn't know about that chemo might have helped, but no way to know for sure

--PET scan
--Has its limitations, b/c it showed no cancer in lymph nodes after chemotherapy
--Still the best screening tool we have and will be used in the future
--Often, symptoms of metastasis are present before PET scan detection anyway, so he told me what to look for:
--Most common metastasis sites and symptoms:
--Liver (seen on regular blood draws)
--Bone (pain in a bone, usually a longer bone, not joint pain)
--Brain (double or blurred vision, headaches)

--My Prognosis
--Number of positive lymph nodes is the best predictor of the future.
--Having 4 to 9 positive nodes means:
--about a 50% chance of distant disease recurrence (metastasis) in the next 5 years
--approximately 50% chance of being alive in 5 to 10 years
--Having greater than 9 nodes positive (which I possibly could have, since they only removed 10)
--about a 86% chance of distant disease recurrence (metastasis) in the next 5 years
--approximately 25% chance of being alive in 5 to 10 years
--My doctor is leaning toward saying I have a 50-60% chance of being alive in 10 years, but I forgot to ask him what criteria he is basing that on, and he said that is assuming there were only 9 positive nodes.

--What's next?
--Doctor appointment tomorrow will discuss:
--Radiation: I'll be doing lots of radiation to chest wall and underarm all the way up to clavicle to cover any cancer in chest or lymph nodes that was missed
--Hormone therapy: I'll be taking a drug called Tamoxifen for five years that will slow down or stop my body's production of hormones, because my cancer is estrogen and progesterone receptive, meaning that those hormones make the cancer grow
--I have many questions to ask tomorrow about other drugs I could take that may help, any clinical trials I could take part in, ovarian supression as an additional precaution, whether we should try another chemo (the answer to this one is probably no, because the hormone therapy and radiation are better options at this point), and whether he thinks I should go to a bigger research center or a more comprehensive cancer clinic (or at least go to get a second opinion)
--Basically, there's no specific answer as to what to do next, it's just opinions and finger crossing.

Sorry to be a bummer, just thought I'd keep everyone up to date on the situation. And please spare me the whole "you're not a statistic, you're a person" speech, I do know that already. :P Sit down and really think of how you would feel if you were told you had a 50/50 chance of making it to age 33 before you respond (or possibly only a 25% chance). (And yes, I know all of you that pray are praying for me, you don't have to say that again either.) I will post again tomorrow with the information I get from my other doctor, but the main next stage will be radiation.

2 comments:

Karen said...

I've been thinking about what to say to you last night and today and haven't really come to anything good. I keep coming back to some of the well-meaning, but really insensitive comments I received when I was going through everything with Lila.

I just want you to know that I'm thinking about you and praying for you. I hope that your doctor's visit today brings better news. *hugs*

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