Am I doing the right thing? (Recap of Lost Posts, Topic Created by Ribbons on Nov 10, 2018)

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This recap includes posts that were lost during CSN's data outage from 10/29/18 to 1/30/19.

 Ribbons

Nov 10, 2018 - 7:34 pm

I guess I just need some reasurance that I made the wise choice. I was diagnosed with clear cell, it was mostly clear cell with some serous cell. I had a total hysterectomy, ( uterus, tubes, overies and cervix)I am 66 and in good health till this. I was 1A grade 3. No signs of spreading, all 22 lymph glands taken out were negative, there was a little lymphvascular invasion. I have a very good gyn/oncologist. She said even though after surgery I was cancer free, I should still have the 6 rounds of carbo/taxol and then possibly 3 rounds of brachytherapy. This seems like a fairly common treatment plan. I decided I did not want to take any chances and to give myself the best chance of remaining cancer free. I have had my first round of chemo, which wasn't too bad. But now that little doubt is creeping in, why do I need to go through this if I don't need it?

 

zsazsa1

Nov 10, 2018 - 8:07 pm

Ribbons, the problem is that

Ribbons, the problem is that clear cell metastasizes easily.  Your chances of avoiding a recurrence are increased by having the chemo and vaginal brachytherapy.

 

Wannabeatit

Nov 10, 2018 - 8:17 pm

I agree with zsazsa1.

I agree with zsazsa1. Especially with the LVSI

 

zsazsa1

Nov 10, 2018 - 10:40 pm

I can tell you, I am in the

I can tell you, I am in the profession, and I did a huge amount of research before deciding on chemo and vag brachytherapy.  It's the right thing to do, based upon the current knowledge of this cancer.

 

NoTimeForCancer

Nov 11, 2018 - 8:16 am

Ribbons, I was diagnosed (dx)

Ribbons, I was diagnosed (dx) with UPSC, Stage 1A, Grade 3. I had the chemo/radiation/chemo sandwich and, like you, wanted to do everything I could to prevent a recurrence.  Did I do too much?  Did I really need radiation?  I ask myself since I am doing fine at 6 years out.  I stopped second-guessing myself and am more GRATEFUL that I am lucky to be in the position I am in.  Many of the wonderful ladies here have had the cancer come back, most of which have done the very same treatment.  You do have to do what you feel is best for you.  I met one woman once who told me she felt guilty that she was doing ok and others were not.  I completely understand that.  

 

Ribbons

Nov 11, 2018 - 11:16 am

Thank you. That is how I feel

Thank you. That is how I feel. And the guilty part, I kind of have that even though I have only had one treatment so far, and I know it will probably get increasingly worse. Two years ago I had rotator cuff surgery to repair severe damage from an injury, I sailed through that with hardley any pain, while others were saying it was the worst thing they had ever experienced! And I am happy to know that you are doing fine, since we  have much the same diagnosis.

 

BluebirdOne

Nov 11, 2018 - 1:29 pm

Many of us have the same DX

I, too, have the DX of stage 1a USPC with also some clear cell. I did the research and the updated guidelines state with the more aggressive USPC that bracytherapy is recommended. I did a great deal of soul searching and reading before I had the brachythapy as I was scared to death of the anecdotal stories of residual side effects of radiation many years later. I will stipulate that my bowel and bladder have not been the same since surgery but I will live with what ever comes my way. What finally made my mind up was speaking with my oncologist and learning that the vagina is the primary spot of recurrence probably due to errant minute cells migrating while the tumor was growing. No one really knows. Since the cervix was removed and they closed the opening, I could easily see how cells could be hiding somewhere in the tissues. I had no cervix or vaginal tumor, but I could certainly see her point. My decision (which is right for me) was to go ahead with the brachytherapy.  To me, the chemo and radiation is an insurance policy against the cancer that I hope will work. I go this week for my post chemo/radiation 1st CT scan. Wish me luck!

 

Denise 

 

LisaPizza

Nov 11, 2018 - 4:17 pm

Good luck Denise! I just had

Good luck Denise! I just had my first post treatment CT, so I know how you feel. 

 

Ribbons

Nov 11, 2018 - 6:01 pm

Good Luck! Yes, that is the

Good Luck! Yes, that is the same thing my Dr. told me, the brachytherapy is an extra protection.

 

hopeful56

Nov 11, 2018 - 8:17 pm

Hi Ribbons,

Hi Ribbons,

I was diagnosed 1a grade 3 UPSC and did 3 rounds of carbo/taxol. I went ahead with chemo in the hope to prevent a recurrence.  So far NED and that was a year this past July. Looking back I feel I made the right decision. 

Only you can decide whether or not to continue with your dr's plan for treatment.  Maybe do some more research treatment vs non-treatment or speak with the team at your dr's office.  I wish you the best of luck in reaching your decision. 

 

EZLiving66

Nov 11, 2018 - 10:56 pm

My doctor's recommendation

My doctor's recommendation was six rounds of Carboplatin and Taxotere but no radiation. I was Stage II, Grade 3 UPSC but they did not sample any lymph nodes so who really knows the stage?

I only made it through three rounds after horrendous side effects which I still deal with three years later. So far, I have shown no evidence of disease. I also take 2000 mg of Metformin a day so maybe that's helping too.

I wish you all the luck in the world. Cancer sucks, that's for sure!

Love,

Eldri

 

The Storm

Nov 19, 2018 - 2:47 pm

JOANCAT, I too feared the

JOANCAT, I too feared the effects of Chemo and radiation everyone does. I completed 5 weeks of external radiation on 10/1/18, I was lucky and only had intermittent diarrhea for about 2 weeks and some vaginal irritation from it. My third chemo is in a few days and so far: constipation, joint discomfort, body aches, a little fatigue and of course hairloss. I feel good days 2 and 3, not well days 4-8, then better every day after, by day 14 I'm pretty much back to myself except I tire more easily. I work full time and only take day of and day after treatment off.  Every person is different . Now, I still have some treatments to go and who knows about long term affects, but so far so good.  Good luck.  P.S. Your body needs 2000 - 2500ml (64- 84 oz.) of fluid per day, this will actually help. I drink 4 oz of cranberry juice in the morning and take 500mg of vitamin c at bedtime for my bladder.