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I seem to have a hard time deciphering the NCCN "guidelines for chemo" Could someone tell me the recommendations for serous uterine cancer stage 1 grade 3? How many chemos and what type of "cocktail" is recommended?
I'll be interested in what other people have to say. My gyn/onc recommended an aggressive treatment of 25 radiation, 1 internal, and 6 rounds of chemo (carbo/taxol). The radiation onc said I didn't need 25 rounds and should have 3 internals, the chemo onc said I didn't need chemo, just 3 internals. Since I really, really don't want the internal radiation because of the long term side effects, my gyn/onc & chemo onc came up with 3 rounds of chemo. Just had my second. I'm going to do more research to see if it would be better to go for 6. chemo onc said chemo gets 99% of cancer but radiation would get 100%.
do you have a date to start chemo yet? The dr changed me from taxol to taxotere for my last treatment since he was concerned about how quickly I got neuropathy (tingling in fingers & toes) and how long it was lasting (still had it when I went for my next chemo 3 weeks later).
It sounds to me like I should go for the 6 rounds of chemo. That's what I've read a lot of women get. You can do a search for Grade 3 in Cancer concerns to find other posts about the treatment for Grade 3.
I just finished treatment for uterine papillary serous carcinoma (UPSC), stage 1 or 2.
My doctor recommended 6 rounds of chemo, Taxol/Carboplatin, which is the standard treatment for UPSC and any other grade 3 uterine cancer.
Some doctors recommend radiation, while others do not. From what I've read, the jury's still out on radiation......whether it's whole pelvic, external or brachytherapy (internal)
In my case, I'd been treated with radiation in 2007 for vaginal cancer, so could not receive radiation again. BTW, I had no long term side effects from the radiation. But I've heard from others where that wasn't the case.
I would def go with my gyno/oncologist's treatment plan, and get a second opinion if so desired. I did get a second opinion from MD Anderson and they agreed with my doctor's plan.
Good luck making this very difficult decision. Hugs to you!
Long term side effects from radiation only occur in about 5% or women, I was told it was somewhat dependant on the amount of intra abdominal fat you have.
I apparently have very little, intra abdominal fat, (have some on the outside )
However I was told that this is the reason I have the problems that I do and that the fatty tissues seems to absorb some of the radiation.
I was told that 6 cycles of chemo is what is needed, and that 6 is a number that has been determined as a means of killing a logarithmic number of cancer cells, as with each treatment a certain amount of cells will not be killed, and this number becomes infinitesimally smaller with each treatment
SO they have determined that balancing the highest number of treatment vs the amount that goes to the area that most women can tolerate.
beyond 6 the risks begin to outweigh the benefits.
My WBC did not go up for months to the level I COULD have received another treatment.
Whatever you do PLEASE do not sell yourself short because of fears of very rare complications
I was the opposite of you: Stage 3, grade 1, therefore less concern about the aggressiveness but more concern about how far it had spread and how long it had probably been growing in there. My gyn-onc recommended 6 rounds of carbo-taxol followed by 25 external rads and 3 internal rads (brachytherapy). My chemo onc agreed with the chemo rec, so that's what I got. Rad-onc thought 28 external without internal would be better for my particular circumstances (where cancer was located, etc.) Gyn-onc deferred to rad-onc so I had 28 external.
I think I've said this before. I wanted to stop chemo several times - I didn't even want to start it, but I forced myself to keep going and I got through it and I'm glad I did. I was TERRIFIED of radiation - even more than chemo - because I had read about some of the long-term side effects.
But like Janet said, long-term side effects are rare. And now, they have new equipment that helps them more specifically target the cancer without damaging other organs. Last week was exactly one year since I finished rad. I have absolutely no leftover side effects from it.
I do have left over side effects from chemo (which I finished one year ago in October). I have neuropathy in my hands and arms and carpal tunnel in my wrists. I've developed arthritis - I probably would have developed that anyway because it runs in my family but I think chemo speeded up the process. Even with those side effects, I have no regrets.
I have moments when I suddenly remember I had cancer and I get scared and overwhelmed with anxiety at the thought it might come back. What helps me get through that is the knowledge I had all the treatment my doctor recommended, and with that treatment, he believes I will have a full recovery.
I looked at the NCCN guidelines and I had trouble deciphering them too. Did you have endometrial cancer or a different type of uterine cancer? Endo cancer is one form of uterine cancer. It looks like the guidelines aren't broken down by grade, just by stage.
Since gyn-onc referred me to different doctors for chemo and rad, I considered what they told me to be my second and third opinions. That helped me feel more confident that I was making the right choice.
I hope I don't sound patronizing or like I'm minimizing your fears and your very legitimate questions about what's best for you. Cancer is a hard, hard journey and it's scary and confusing and it feels like it's taking forever. Sometimes it feels hopeless, and sometimes it feels like those doctors are crazy or overreacting because we "know" cancer's not going to get us, and sometimes it feels like it'd would be better to die from cancer at some distant point in the future than go through treatment now. I had all those feelings. I still have them but not nearly as often and not as intense as they were when I was in the middle of it.
You have the right to not go through any more treatment. You have the right to ask for another doctor's opinion. This has got to be your decision. But I really, strongly want to encourage you to stick it out.
I have 3 personal friends who had/have UPSC (uterine papillary serous carcinoma which I think is what you said you have) - all in the past 5 years. Can you believe it? I don't know anyone personally except me who had the garden variety, endometroid adenocarcinoma or Type 1. They say the Type 2 uterine cancers are rare!
Anyway, each of these women received their treatments from different health care providers in this area; one was Stage 1b, one Stage 2a, and one Stage 3c. It's my understanding that UPSC is always considered grade 3 and is aggressive.
Each of them had the kitchen sink thrown at their cancer, as opposed to my Stage 1a, Grade 1 endometroid adenocarcinoma which is just being followed by exams and pap smears because it is not considered aggressive and surgery alone should have been all that's needed.. I think aggressive treatment is pretty standard with UPSC at any stage beyond 1a. My friend with stage 1B was told she would have 6 rounds of carbo/taxol, but her oncologist stopped at 4. I don't know why. She said he thought 4 would be enough for her. The others had the full 6 rounds - carbo/taxol.
Stage 1b friend had internal radiation only - 3 cycles. Stage 2a, had both internal and pelvic, and Stage 3 did not have any because she has some mediastinal node involvement. She's on another chemo now - Gezmar.
Just relating my personal experience with 3 personal friends with your type of cancer. Good luck with your decision.