Endometrial - stage 3c

Soup52

Feedthekitty said:

Considering Chemo but no radiation

Wondering if anyone with Stage 3C2 (spread to paraortic, pelvic and parametrial lymph nodes) Grade 3,  has opted to do just the chemo and not the radiation. Recommendation is 3 rounds paclitaxol and carboplatin, 6 weeks of external extended field pelvic radiation, 3 more rounds of chemo.  I worry that the doctors minimize the possibility of chronic and or long term side effects of this kind of radiation. I want to have a good idea of what my quality of life would be.  When I read what it can do to pelvic bones, bowels, lymphadema, urinary issues and stomach issues, I don't know how much of a gamble I'm taking. I'm 65 and have always been super healthy.  I don't want to live longer just to be managing side effects.    And I can't help but think the delay to get surgery from the time my symptoms were first addressed to 100 days later when I had the hysterectomy put me in a higher risk catergory with the paraortic lymph involvement. It is hard not to be bitter about that.  I think I can handle the chemo better than the radiation.  With no radiation I will be getting 6 rounds of chemo.  Not sure what my odds are of making it to the 5yr mark with or without recurrence.

I had 3C-3 endometrial cancer

I had 3C-3 endometrial cancer and had 5 weeks external radiation as well as 3 brachytherapy and 6 rounds of carbo taxol. I finished all treatment in June and am currently clear of cancer. Yes, unfortunately I do have bowel issues and after I talk to the gastroenterologist hopefully Monday about my current situation I may start a new thread on the uterine board about it. Have you been on that board? I don't think I've seen you on there. It is a very active board, so if you haven't gone on it I suggest you try it out.

Moped7946

Soup52 said:

I had 3C-3 endometrial cancer

I had 3C-3 endometrial cancer and had 5 weeks external radiation as well as 3 brachytherapy and 6 rounds of carbo taxol. I finished all treatment in June and am currently clear of cancer. Yes, unfortunately I do have bowel issues and after I talk to the gastroenterologist hopefully Monday about my current situation I may start a new thread on the uterine board about it. Have you been on that board? I don't think I've seen you on there. It is a very active board, so if you haven't gone on it I suggest you try it out.

the 3C Grade 3 thing

I had that as well...did taxol and carboplatin last year from around June 2016 until October 2016...then pelvic radiation until December 2016...I think it was 28 treatments...I did pretty well initially but it seems that now I am having weird bowel/digestive issues...a lot of peripheral neuropathy (I am diabetic so chemo didn't help that too much) and now ataxia. Will be having a nerve conduction test soonish and a CT scan the 28th...had an MRI of my head to rule out a brain tumor...so far no news on a brain tumor just that I will probably be somewhat uncoordinated for the rest of my life. It isn't all bad maybe slowiing down was a GOOD thing but it IS weird...takes getting used to...anyone else have balance issues now?

 

Kathy C

3c Endometrial

Hello all. My name is Kathy. I was diagnosed with Grade 1 3c endo cancer in Sept 2014. Had 6 months of chemoand 25 radiation. Poppy size cell found in one lymph node. Am now on every 4 month check up schedule. My check up is on Wed. Very scared. Every little ache or pain I think cancer is back. I had no symptoms when it was discovered so I am living in fear of the same thing happening. Check ups consists of pelvic and Ca 125. Docs say CA 125 is unreliable soI don't know why it's done- it causes so much fear. Have been pushing for CT or Pet but am told - at two different hospitals it is not "protocol." I'm sure that's another term for insurance doesn't cover it, but for piece of mind I'd pay myself. I seem defenseless. Is anyone willing to email me and keep in touch? I am

so afraid ALL the time. I am 63 with a 5 yr old granddaughter that I want to be around for. Any support would be appreciated. My email is mud53@aol.com

Thank you

NoTimeForCancer

Hello Kathy, I think you will

Hello Kathy, I think you will find a lot more women on the Uterine page will respond.  They "other" page can get a little quiet and only a few women will pop in from Ovarian or Uterine - we do check in on the other 'below the belt' cancers.

We have talked about the fear before, it is very real, and the passage of time is the only thing that really helps.  With agressive forms of uterine cancer - Grade 3, many of us have the same protocol you are receiving - a pelvic, CA125, and possible rectal exam as well.  A CT gives a big dose of radiation and you really don't want to do them unless there is a reason - you have pain, they feel something, etc...

Also, I would recommend editing your post and remove your email.  People can send you private emails through the chat board by clicking on your name.  In the meantime enjoy your granddaughter and all the joy she is brining you.

Hma4

Feedthekitty

I was diagnosed with 111C2 adenocarcinoma uterine cancer- in 9 mths total June 2016- Dec 2016 I did chemo (taxol and Carbo)  25 rounds of external radiation and 3 brachytherapies- last moth I was told I was in remission- NED! I did very well with treatment. Yes I have bowel issues, but nothing Imodium can't help with. Chemo left me with neuropathy mainly my fingertips and my feet, but it's not dibilitating, it takes a bit for my legs to get started and by the end of the day they ache a little and fatigue still sets in when it wants, but Iam able to do everything I did before. Hang in there! I'm 53 and have a new grand baby coming this Dec. I have a lot of plans for me and my little one. Sending  hugs and prayers

Feedthekitty

Finished 3 rounds of chemo

As scared as I was of chemo, I'm tolerating it pretty well. Carbo/taxol every 21 days. I take a glutamine supplement to minimize mouth sores (have not had any) and neuropathy. I also get acupuncture on infusion days. Neuropathy has been minimal and is gone before next  chemo. My onc suggested 24hrs claritin for first 4 or 5 days for muscle aches. My first round I didn't take it and had one night that was very painful! Last 2 rounds I think the claritin helped a lot. Zofran totally effective. No nausea at all. I take it for 4 days following chemo.My petscan is later this month along with consult with  proton beam doc as well as radiologist. I'm still not sold on the idea of radiation because of the side effects. They can't predict how someone will do or who will wind up with ongoing issues. Because of para aortic node involvement, it's extended field radiation.  Unpredictable bowels and digestion issues can really affect ones life. I have 10 days to  ponder things before I need to decide!

Hma4

Feedthekitty said:

Finished 3 rounds of chemo

As scared as I was of chemo, I'm tolerating it pretty well. Carbo/taxol every 21 days. I take a glutamine supplement to minimize mouth sores (have not had any) and neuropathy. I also get acupuncture on infusion days. Neuropathy has been minimal and is gone before next  chemo. My onc suggested 24hrs claritin for first 4 or 5 days for muscle aches. My first round I didn't take it and had one night that was very painful! Last 2 rounds I think the claritin helped a lot. Zofran totally effective. No nausea at all. I take it for 4 days following chemo.My petscan is later this month along with consult with  proton beam doc as well as radiologist. I'm still not sold on the idea of radiation because of the side effects. They can't predict how someone will do or who will wind up with ongoing issues. Because of para aortic node involvement, it's extended field radiation.  Unpredictable bowels and digestion issues can really affect ones life. I have 10 days to  ponder things before I need to decide!

Feedthekitty

Unpredictable issues - is a pain, but they can be managed. I am having more issues now than before. I make sure to take Imodium before going any where I don't have time to mess with those issues. I did the carbo/taxol radiation and brachytherapy I'm a 3c2 also. I think with C we have to take the bad (effects) with the good (life) . It changes us no matter what we choose - choose what's best for you hugs and prayers. 

christine8822

Stage IIIC Survivor

Hi, I like that this page is just for IIIC endometrial cancer folks. I was diagnosed stage IIIC grade 2 in June 2015 had hysterectomy, 6 months of chemo/radiation in a Sandwich method (3 chemos, 5 weeks pelvic radiation, 3 more chemos), finished Dec. 2015.

It took about a year after the chemo ended for my hair to grow back into any usable form, and it was very curly. Now, almost 2 years later, it is still very curly and coarse, but I'm glad to have it! And it is back to my shoulder length.

Bowel issues -- I had those for about 15 months after treatment ended. Mostly that the chemo/radiation messes with the lining of your intestines so they don't work right. Keep recovering...it does go away if you drink Kefir (or other probiotics), eat right and take care of yourself.

I do have peripheral neuropathy in my feet, and it's permanent. I don't let it stop me. Walking, tai chi, swimming, I do whatever I can to improve balance and keep using my feet. Use it or lose it! 

I've had good dr. visits and CT scans since end of treatment so I'm hopeful for the future of a complete recovery, with cancer fading into the past. Don't give up, ladies! Don't worry about the side effects if the treatment saved your life.

PS: A new study just came out showing that for IIIC endometrial cancer, Chemotherapy plus radiation is by far the best treatment for preventing recurrence. 

Love and hugs to all.

 

Soup52

Christine, my story is much

Christine, my story is much like yours, but my treatments need June 2016. I pray by June 2018 my hair will reach my shoulders, but it has a long way to go! I think this has been mentioned before, but endometrial cancer is a type of uterine cancer and I am on that board which is very active:)

christine8822

endometrial cancer iiic

Hi Soup52, best of luck to you and certain your hair will be gorgeous soon....

and yes, i am usually over on the uterine cancer discussion board but do notice many of the folks there have serous, sarcoma, other types of uterine cancer besides endometrioid  i've had a hard time finding other IIIC endometrioid people there although many of the posts are great.  

at60

Feedthekitty said:

Considering Chemo but no radiation

Wondering if anyone with Stage 3C2 (spread to paraortic, pelvic and parametrial lymph nodes) Grade 3,  has opted to do just the chemo and not the radiation. Recommendation is 3 rounds paclitaxol and carboplatin, 6 weeks of external extended field pelvic radiation, 3 more rounds of chemo.  I worry that the doctors minimize the possibility of chronic and or long term side effects of this kind of radiation. I want to have a good idea of what my quality of life would be.  When I read what it can do to pelvic bones, bowels, lymphadema, urinary issues and stomach issues, I don't know how much of a gamble I'm taking. I'm 65 and have always been super healthy.  I don't want to live longer just to be managing side effects.    And I can't help but think the delay to get surgery from the time my symptoms were first addressed to 100 days later when I had the hysterectomy put me in a higher risk catergory with the paraortic lymph involvement. It is hard not to be bitter about that.  I think I can handle the chemo better than the radiation.  With no radiation I will be getting 6 rounds of chemo.  Not sure what my odds are of making it to the 5yr mark with or without recurrence.

3c1 and no radiation

I was diagnosed with 3C1 grade 1 in January 2018 and it was highly recommended that I do both chemo and radiation.  I chose to do only the 6 rounds of chemo.  Chemo was completed end of May 2018.  I am currently in remission.  What did you decide to do and how are you doing?

cmb

at60 said:

3c1 and no radiation

I was diagnosed with 3C1 grade 1 in January 2018 and it was highly recommended that I do both chemo and radiation.  I chose to do only the 6 rounds of chemo.  Chemo was completed end of May 2018.  I am currently in remission.  What did you decide to do and how are you doing?

at60

This is a rather old thread and many of the women here no longer post to this site (you can check when someone last logged in by clicking on their user name). So you might not get a response to your question.

It's great to hear that you're currently NED (no evidence of disease). But if you have questions about how you’re feeling today or comments about your past treatment please consider posting on the uterine board. That board is more active than this one and there are women there who share your diagnosis.

Babydolly

I was diagnosed with stage 3

I was diagnosed with stage 3 uterus cancer or endometrial cancer on may 10 of this year five days before my 30th birthday. I'm doing 6 months of chemo then radiation and of course before all that I had a  hysterectomy. going to surgery really was hoping that I didn't have to have a full hysterectomy but once he got inside and open me up he saw the cancer was everywhere.  I went to the hospital was because I had this excruciating pain in my stomach. I thought i had kidney stones ended up having a mass on my left ovary which led to all this I'm not sure how to deal with it all

cmb

Babydolly said:

I was diagnosed with stage 3

I was diagnosed with stage 3 uterus cancer or endometrial cancer on may 10 of this year five days before my 30th birthday. I'm doing 6 months of chemo then radiation and of course before all that I had a  hysterectomy. going to surgery really was hoping that I didn't have to have a full hysterectomy but once he got inside and open me up he saw the cancer was everywhere.  I went to the hospital was because I had this excruciating pain in my stomach. I thought i had kidney stones ended up having a mass on my left ovary which led to all this I'm not sure how to deal with it all

I'm so sorry that you had to

I'm so sorry that you had to find this site. I know how shocking it can be to hear that you have cancer, especially at such a young age.

I'd like to encourage you to post your questions or comments on the unterine board. There are women there with your stage of cancer. Others will be happy to talk about any issues or concerns you have and provide support as you have treatment.

This topic originated back in 2003, before there was a separate uterine board. That's the reason why there aren't as many newer comments here since others with uterine cancer use the uterine board. I hope we hear from you there.

 

Feelingalone74

hojo said:

hi my name is ronnie and i am a survivor of stage 3 endometrial cancer, diagnosed 12/99 at 47,,,,i also had radiation and 6mos of chemo...and today i am great, healthy and happy to be replying to your note ...let me know how i can help....

Thank you for your post. I'm

Thank you for your post. I'm 44 and have stage 3 endometrial cancer. Your post brings me much hope!!!

So glad your well!