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Anyone with UPSC 1A have chemo but NOT radiation? Or only external radiation?

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

I'm coming up to a crossroads and wanted to hear from my UPSC sisters. I was diagnosed IA in October after a robotic hysterectomy. Had de-bulking/staging surgery in November - 22 lymph nodes, omentum, tubes, ovaries, cervix, vaginal cuff, washings all were negative. Yeeeha!

One gyn/onc told me I'd need nothing but observation, but since the uterus was morcellated in the hysterectomy he could understand if I wanted chemo. His gyn/onc practice partner told me that I'd probably need radiation as well.

Last week I finished my third and final round of chemo (yeeeha!) and I'm glad to have some excruciating bone pain and bad mouth taste starting to fade in the rear view mirror. I've got a CA125 test and CT scan next week, and I'll meet with gyn/onc #2 to hear what he has to say about radiation.

At this point, all I can think about is scary stuff (which sucks because I've been in a blissful state of denial for months now - I think when the doc said pathologies were negative I told myself 'take that, cancer' and in my mind I was done).

> If pathologies were negative and I've had 3 rounds of chemo (and why only 3, everyone else seems to have had more) isn't radiation redundant?
> Has anyone had only external radiation, and if so what was that like?
> If you had UPSC IA and skipped radiation, have you had a recurrence and if so where?

I'm 45 years old and the thought of needing a dilator for 40 years makes me squirm. Of course the thought of having the UPSC spread/metastasize also makes me squirm.

Argh.

Any shared experiences are so appreciated.

Liz in Dallas

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Hi Liz,

I was not 1a - but 3a - and my doc told me he was NOT recommending radiation for me. He said, "the science doesn't support it......If it returns in the vaginal cuff I have VERY good chance to cure that".

I did recur a year later but in the supraclavicular lymph nodes. I then had chemo and radiation for that.

I now have 3 positive nodes in pelvic area but have not seen my doctor yet. I will get biopsy on Friday and see him next week. So jury is out on this treatment.

But, I truly never saw the wisdom of radiating the whole abdominal area. What are they aiming at? especially with 1a. Like a blind person randomly shooting a gun? Sometimes I think doctors recommend the MOST treatment which may not necessarily be the BEST treatment. Perhaps it serves as the placebo effect (give us PERCEPTION that we are getting all those bad guys) or maybe a defense if a patient claims not enough was done. I remember asking my doctor what he would recommend to his favorite sister!!!

The NCCN guidelines which my doc uses allows the practitioner options. Options are listed as +/- giving practitioner discretion. They are not listed chemo + radiation as the universal formula. Waiting and watching is another option which I chose before getting chemo and radiation for recurrence - a mutual decision with my doc. I went on my radical lifestyle change (diet and other alternative modalities) and we watched CA125 trends. When my numbers doubled we then decided to treat.

I think my doc is the BEST and I've been told so by a UPSC researcher. In the end we make the decision which way to go. I never regretted my decision not to have abdominal radiation. That is still an option for me IF I need it in the future (like having a treatment option in the bank). But, check with your doc, I think that once we have radiation in an area it can't be irradiated again.

I hope I didn't confuse you. Good luck with your decision. All the best.

Mary Ann

Kaleena's picture
Kaleena
Posts: 1227
Joined: Nov 2009

Hi Liz:

I was 45 years old when after a hysterectomy I was found to have endometrial adenocarcinoma Grade 2, Stage ii/iiia. After another surgery for staging, and removal of omentem, lymph nodes, appendix, and washings, all were found to be negative. It was suggested that I have chemo (6 carbo/taxols). Could not take taxol - so I had carbo/gemzar alternating weeks for 6 months. At first they indicated that I would not need radiation but after a year it was suggested. (I don't know why). However, my radiaton/oncologist would not do pelvic because I was severely scarred from the endometriosis. However, I did have 3 brachytherapies. That was the last treatment I had. I did have a port put in for the chemo and had it in for over five years. (just got it out).

Had a positive biopsy in 2009, had operation in Feb of 2010 - all was negative except a lymph node removed which had microscopic cells. No treatment only on a wait and see approach. Three PET Scans and one CT scan later all clear to date. I am now 51 years old.

Why are treatments different? I believe with me that although the final diagnosis was endometrial adenocarcinoma, they were not sure where it originated from. I had it in my uteris and on my left ovary. Further, they weren't sure at first if it was MMM?? but ruled that out. I was treated as ovarian cancer (to get some of the tests) and because they were still uncertain where or how it originated. And I believe that is why they put a port in me and did not really want to take it out right away.

I hope this doesn't confuse you more. May you find comfort in your decision making.

Kathy

P.S. Great news on your clear staging!

Michaelynn
Posts: 71
Joined: Apr 2010

I had 6 rounds of carbo/taxol and 3 rounds of internal radiation at the vaginal cuff. My Doctor said he wanted to do all the preventative treatment that he could so that the cancer would not return. I had no difficulties with the radiation itself. It was only 10 minute sessions and you don't feel anything at all. I guess I would rather opt on the side of caution and do the treatments than take the chance that it would come back at the vaginal cuff. I am almost 2 years out with no further developments. I don't understand why your doctor is only doing 3 chemo treatments. The standard is 6 treatments 3 weeks apart. Of course if the doctor asks any of us if we want 3 or 6 treatments most would say 3 just to be done with it. Sometimes less is not always better. There's a reason most doctors opt for 6 treatments and the radiation combo.

Michaelynn

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

about the 6 rounds of Carboplatin and Taxol (at least that was my combo). I also think that maybe a 7th would have been good since I'm dealing with UPSC as you are.

To clarify - I did have 6 rounds of chemo only during intial treatment (following TAH).

And Kathy, question for you. You had some positive lymph nodes on PET and did you have one removed (you mentioned surgery)? I'm really curious about the fact that you are NED now. What do you attribute that too?

I don't know how much uptake my nodes got until the 10th. I have CT/needle biopsy scheduled Fri. I'm wondering in waiting and watching would be best for me. Any thoughts?

MA

Kaleena's picture
Kaleena
Posts: 1227
Joined: Nov 2009

Mary Ann:

I had a needle biopsy under sedation only. All PET Scans, CT Scans and an MRI were negative. I had a small mass near my rectum and that is what they biopsied and came back positive. (CT scan showed there was something there (scar tissues or whatever) but that it was there from the beginning (when I had my hysterectomy) and actually indicated that it had shrunk).

The lymph node with the microscopic cells was a lymph node that was removed during my last surgery to remove the small mass near my rectum. Since the lymph node was removed, there was really no need for treatment (unless I wanted radiation) or wait and see approach. I went with the wait and see approach.

Kathy

susangr
Posts: 63
Joined: Oct 2010

I had the works. Taxol weekly x5 weeks with pelvic radiation daily x 5 weeks and 3 internal Brachy radiation treatments to the vag cuff. This was followed one month later by Taxol which had to be switched to Taxotere because of neuropathy 21 days apart x 5 cycles. Everything was negative in terms of nodes, washes and omentum but there was some " lymphvascular space involvement" which was explained to me this way ....... the cancer was on the highway but had not made it to the nodes. My doctor's view was to hit it with everything because once it recurs it is almost impossible to stop. I think it is really hard to make these decisions and then move forward and not second guess yourself! Good luck.....in whatever you decide to do.

JoAnnDK
Posts: 276
Joined: Jun 2011

MaryAnn, you met a UPSC researcher! Wow, there can't be many of those types around. Did you pump him/her for information?

JoAnn

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I tried to get into a trial and communicated with principle investigator via email. I was not eligible for study and we just chatted a bit. I saved email.

I did not take opportunity to pick his brain at the time. But maybe I can still go there!!

MA

Rewriter's picture
Rewriter
Posts: 496
Joined: Dec 2009

My UPSC was confined to a polyp, with everything else (lymph nodes, etc.) being negative. I was offered observation as a treatment option, but my gyne-onc strongly recommended that I complete six rounds of carbo-taxol followed by 5 rounds of vaginal brachytherapy. His feeling was that whole pelvic radiation was not necessary because brachytherapy conferred the same survival benefits for this stage with fewer (typically no) side effects. Prior to my starting treatment, my gyne-onc said my prognosis (with treatment) was "excellent."

I have been NED since completing treatment in November 2008.

Recommendations for treatment change frequently. I would suggest asking your doctors whether they could provide you with copies of research studies showing the results of the treatments they recommend.

Another thing I wanted to mention is that I assume from your post that you believe external radiation is preferable to vaginal brachytherapy. In my humble opinion, that is absolutely NOT the case. For most women, the vaginal brachytherapy is quick, painless, and without long-term (or even short-term) side effects. Using a dilator for the rest of your life is simple; I insert the dilator about ten minutes before showering, watch some TV or read, and then take my shower. It is absolutely NO BIG DEAL. If you are sexually active (sex with penetration) with a man at least three times a week, you may be able to forego the dilator.

Good luck,

Jill

minniejan
Posts: 88
Joined: Dec 2010

Hello,

I am also stage 1A, grade 3 UPSC. Diagnosed Dec. 2010. I had three chemo treatments, carbo and taxol, plus three brachytherapy treatments. 9 months NED. Now I am dealing with another totally unrelated rare cancer so I have not been active on this site too often. I too wondered about this discrepancy in treatment.

Minniejan

fanniemay
Posts: 52
Joined: Nov 2011

I also wonder about the discrepancy in treatment. My surgeon said 4 chemos is enough, while the radiation dr. recommends 6 chemos and 3 brachytherapy. I just had my 3rd chemo today. I have been tolerating them well. As it is 11 pm and I have insomnia I decided to see what new with the ladies that have UPSC. Not sure why some say they are 1A grade 3 UPSC. All they told me was that I was grade 1A with tumor confined to my uterus and everything else was negative, including 15 lymph nodes. Minniejan, sorry to hear about the unrelated rare cancer. God Bless and hugs, fanniemay

I Will Survive
Posts: 27
Joined: Aug 2011

fanniemay, a number with a letter following it is the STAGE of the cancer - its range is 1A to 4. This is determined during pathology.

I do not think a grade is given as 1A. Grade is given as 1, 2,or 3. Grade can often be determined with a biopsy.

Best wishes
Hannah

imackie48
Posts: 93
Joined: Nov 2011

Edith,
I'm glad things are going well with your treatments. Imam getting ready to head to the (chemo den) as I call it. Had to take alls those steroids last night, then took some zNax to sleep.
My doctors say i only 4 chemos for me too but 2 brachytherapy, it seems to be the standard, my doctor told me we are treating your pathology, not the stage. My tumor was 3cm in the uterous with less than 40 % into the endomoid wall. Anything less than 50% is considered 1a, more than 50 is 1 b.
All my lymphs were cleat too. But my radiation doctor says I only need 2 brachytherapy,
I started healing touch, I have to tell you it's helped me get my some of my energy back, but I do pace myself. All the services are free to cancer patients which include massage reflexology, nutrition consult, pain management. Yoga. The visits last one hour. She even has her therapy dog there for us.
Wish me well, and Edith just think you only have one left , and you can see the end of tis chemo tunnel .

My prayers go out to all our UPSC and others to have NED, ;FOREVER.

Hugs to all, Irene

I Will Survive
Posts: 27
Joined: Aug 2011

I love to have reflexology done, it is so relaxing. Well, that, and it is the only massage allowed during chemo. Don't want to stimulate those lymph nodes, apparently. As soon as I was given the green light to do so by my doctor (after chemo), I booked a full body massage.

Pat51
Posts: 111
Joined: Feb 2011

Fanniemay,

I am glad to hear that you are tolerating your chemo well so far. I finished my chemo about 6 months ago. You had mentioned, in a prior post, that you are from Wisconsin. I am also from Wisconsin. May I ask who your doctor is? I am looking for a GYN/ONC that knows more about UPSC. I am a stage 1A (on new chart) grade 2/3. Most UPSC is grade 3, which is a more agressive tumor. My personal email is basketaddict@charter.net if you can let me know what doctor you see.

Pat

Pat51
Posts: 111
Joined: Feb 2011

I am also stage 1 UPSC, grade 2/3. The tumor was confined to the inner 1/2 of my uterus, everything else and washings were negative. I was staged at 1B on the old charts and I am a stage 1A by the new charts. My GYN and ONC both recommended chemo and brachy radiation. I had 6 rounds of carbo/taxetere, with a couple of delays. After chemo, I had 3 brachy treatments. The brachy was recommended by a top rated radiologist. The brachy therapy was a breeze (no side effects) and the dilator is no big deal. UPSC is a very scarry diagnosis. I am glad to have done the treatments, just to know that I have done all that I can to prevent a reccurence. I have my first scans, since diagnosis, next week. I hope that they will show I am NED.

Pat

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