Doc appt 2

Somewhat happier news to share today, thankfully. :)

--Drain got taken out, woohoo! Didn't hurt a bit to take out, and am so happy that I will be able to sleep in my bed tonight! (Been sleeping on the couch for fear of rolling over and pulling on drain tube, which hurt even when it wasn't being pulled.)

--Saw medical oncologist today (chemo doc, drug doc, hormonal therapy doc, etc.) Everyone who has heard who I have as my doc has said he is one of the best in the world, and after today I totally believe it too.

--What we discussed:

--Radiation:
--Will start as soon as I heal enough. Have an appointment next wednesday with my radiation doc. Will radiate a larger area than originally intended based on my lymph node status.

--Tamoxifen:
--This is the drug that attaches to estrogen so it can't feed the cancer. This was already on the menu for me to start taking sometime soon. He said why wait, gave me a script and I started today. It's a daily pill, for about 5 years.

--Lupron:
--Something I found out about on internet, it is a way to supress your ovaries, putting you in to menopause, so they don't produce the hormones that my cancer feeds on.
--Was going in there, all ready to ask about it and push for it, etc. and he totally up front agreed with me and said yes, we should add that to the Tamoxifen. Got my first injection of it today, will get it monthly for awhile, and then when we know for sure that it has shut down my ovaries, will get it every 3 months, for around 2 to 3 years.

--Zometa:
--Something else I found studies for on the internet. It's actually given to women to help with bone loss. Older (post-menopausal) women can take different meds than Tamoxifen, but they cause bone loss (or maybe it's the Lupron that causes bone loss, I forget?). Anyway, there are fairly new studies out that seem to show that Zometa actually prevents recurrence of breast cancer. It's not ready to be fully used for that purpose yet.
--Doc agreed again, said it can't hurt, will probably help prevent at least recurrence in the bone, so let's do it. I'll start that next month (he didn't want to throw all 3 at me at once). It's a 15-minute infusion drug (given like chemo but without the side effects) that I'll get every 6 months.

--One reason I really like this doc is that he not only agreed with wanting to give me everything that could possibly help, but he already knew about the studies I was mentioning and even some previous studies in other countries that I didn't know about. He is up to date on everything it seems and is willing to try anything to help my chances.

--We are going to continue to use PET scans as screenings, but also blood work. The blood will not only tell us about liver function, but there are some things called tumor markers that may be of some use to look for (though he said its not a proven way to detect cancer, it can't hurt to look for them anyway).

--Not sure how much I believe this part (will have to do some more of my own research), but doc believes that by using all 3 of these tactics, we can increase my overall 5-year survival rate to more like 70%! And my disease free survival rate (chance that I will not have a recurrence in 5 years) to 60%. So that's a good bit better prognosis, now that we are throwing everything we can at the cancer.

--It's still not the greatest prognosis, and you could tell by the way everyone that read my report asked how I was doing that they know how serious it is. But I feel better just knowing that we are trying everything we can.

--Also, Cody and I made an appointment with the psychologist at the clinic, and we are going to ask her to refer us to someone closer to where we live. We feel like we are taking everything fairly well (of course, I am up to 2 anti-anxiety pills a day) but we want to make sure we don't spiral downward (plus Cody is not on any medication and is stressed with work and his ailing grandfather as well as me, he may need it more than I do!).

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.

Surgery tomorrow!

So I'm having my left mastectomy and lymph nodes removed tomorrow. It'll be an overnight stay in the hospital (yes, I'm making Cody spend the night). I've been nervous all week, but not as bad as I thought I'd be (trying to keep myself busy!). I'm sure it'll hit me worse in the morning, but hopefully they'll give me good stuff at the hospital to help, lol. Anyway, just realized that I hadn't posted about that here (more about it at goddessj.livejournal.com if you're interested). :D

Doc news

So I don't think I wrote about it here, but my cancer is so small now a PET scan can't detect it. A mammogram can though, and though my tumor itself is small enough for a lumpectomy, there are several calcifications in my breast and so I will be having a mastectomy (on April 15). They will remove my left breast and the lymph nodes in my armpit. I'll spend the night in the hospital and go home the next day. I'll have drains in place for a few weeks which I will have to empty twice a day. Then, a month after surgery, I'll start radiation. That will be for seven weeks, five days a week. Six months after that, I can have reconstructive surgery. I'm gonna meet with my plastic surgeon on Monday to ask some questions. But basically, I won't be able to have an implant because of the radiation (it tightens your skin too much for tissue expanders). So I will probably have a TRAM flap, which is where they basically do a tummy tuck and use that skin/muscle/fat or something to reconstruct my breast. I could choose to have a double mastectomy for aesthetic reasons, but there's not a medical reason to do so (however, doc can make it sound like one so insurance would pay for it). Doc said a double mastectomy would be neither helpful nor harmful, it's up to me. I'm kinda leaning toward a single mastectomy, will see what the plastic surgeon says though. Anyway, that's the news for now!