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Anyone who had chemo AND external beam? Long term side effects?

zsazsa1
Posts: 314
Joined: Oct 2018

I'm having trouble making a decision between vag brachy and external beam to pelvis.  I have UPSC/clear cell, which was in the upper end of the uterus and isolated cells found in one of two sentinel nodes.  Wash and omental biopsy negative, no gross evidence of disease, no other nodes sampled.  I was originally read as a Ia, but reclassified as a IIIc1 in order to qualify for Herceptin.  The GOG-249 and PORTEC-3 studies are pointing me toward external beam radiation to the pelvis, the GOG-258 to chemo plus brachy, and I've had different recommendations from different radiation therapists.  My inclination is to go with external beam to pelvis, because I do feel that it offers me the greatest chance of a cure.  But I'm afraid of the long term side effedts.

Has anyone had the external beam radiation therapy to the pelvis?  How have you been since then?  Severe side effects?

barnyardgal
Posts: 208
Joined: Oct 2017

I had chemo (7 rounds adriamyacin and carboplatin) and 25 external beam radiation (targeted beam). I finished everything in June 2018, and no issues so far, except hemorrhoids, and even that isn't bothering me anymore. I was 3a, grade 2, with the garden variety type. Hopefully no issues will show up later, but the radiation doctor doesn't expect any. 

zsazsa1
Posts: 314
Joined: Oct 2018

From what I understand, carbo plus taxol is the standard.  What made them choose adriamycin?  Did you have local extension?  Just a positive node in the pelvis?

I read about the pain that some women are in after radiation damage to the bowel or urinary tract system, and I get very nervous.  And yet, I'm pretty sure that most women do okay with it, or they wouldn't be doing it.

barnyardgal
Posts: 208
Joined: Oct 2017

I was allergic to Taxol. Even desensitization didn't work for me. Adriamyacin was used for years before Taxol, but was dropped because it had more toxicity, and was often hard for people to get thru all the treatments. I did have a lot of delays. I was nervous about adria as one of my good friends had it and ended up with heart problems, which is a side effect. Fortunately, I'm ok. Cisplatin is common to do with adriamyacin, but that is another difficult drug, often called cisflatten. So as the drs knew I could handle the carboplatin, they combined that with the adriamyacin. Sometimes breast cancer patients get four taxol/carbo, and four adriamyacin. 

I didn't have any cancer in the nodes. Just in the uterus and a couple of cells, not a tumor, on one of my ovaries. 

Jairoldi's picture
Jairoldi
Posts: 202
Joined: May 2017

zsazxa1 I had my surgery on May 1, 2017 followed by carbo/taxol then switched to carbo/taxotere for a total of 6 infusions. Next up was 25 external. I am UPSC Stage 3B.  I asked my doc if I would have brachy radiation and she said she could get the job done with just external.  I am a year and a 1/4 out from completion of treatment around December 1, 2017.  It took awhile for things to settle down for me but right now all is well.  I needed to learn which foods to avoid ;).  For me it has been worth it.  From what I hear from the other ladies I'm happy I didn't need the brachy and I know it's still an option should I recur at the vaginal cuff.  

Oh, when I asked if I reaaallllyyy needed radiation (I was scared) my radiation oncologist said this was the time to have the best chance at getting the job done.  Though she did say that radiation is not life extending it is meant for a better quality of life.

 

LisaPizza's picture
LisaPizza
Posts: 208
Joined: Feb 2018

I had chemo followed by external radiation for endometriod adenocarcinoma stage 3a. Finished rads in June 2018. I've had diarrhea ever since, and even got worse this winter (really bad). HOWEVER, I've just found out I have microscopic colitis (autoimmune / inflammatory bowek disease), so it may turn out I have no side effects from the rads once my colitis is treated. I was also told that it hasn't been shown to prolong life but to prevent local recurrence.

 

zsazsa1
Posts: 314
Joined: Oct 2018

Yes, from the studies it looks as if it's just a crap shoot, that if it's gotten out of the field, it's out of the field.  But it is effective at preventing recurrence in the irradiated field.  The presumption is that if it hasn't gotten out of the field, it may be life saving.

Tamlen's picture
Tamlen
Posts: 192
Joined: Jan 2018

I'm too lazy to go back through other threads to see if you have. The reason I'm asking is that I'm a cautionary tale about the potential mistake external radiation can be **if** you don't have the full story of potential spread outside of the abdomen.

I was stage II after surgery and the tumor board urged me to have external radiation due to "suspected" LVSI. All pelvic nodes were removed, all clear, nothing in the washings. External was solely preventative. It took two months to get a referral appointment with a radiation onc because they did not see a reason to hurry. The first thing he asked was for a copy of my CT scan. When I told him I had repeatedly requested one from my gyn onc, but had been told there was no rush, he arranged for the scan the next day.

I turned out to be Stage IVB, nodules in my lungs. Nowhere else. So I needed chemo, not external radiation, in my instance. It makes me cringe to think that I might have had all that external radiation instead of what I needed. The proper treatment was delayed by three months because of all this. At Stage IV, three months feels like a lot, I'll tell you.

If you've had a CT or other scan and know the full picture, just ignore my note! If not, I'd encourage you to demand a scan before proceeding.

CheeseQueen57's picture
CheeseQueen57
Posts: 797
Joined: Feb 2016

I had external radiation. After the initial acute side effects now I have scar tissue blocking one of my ureters which most likely was caused by the radiation and most likely will require surgery or lifelong stents. It also ruined my already brittle bones resulting in multiple fractures. I am now on prolia. But I’m alive and kicking. I think I had much more problems with the internal radiation which resulted in severe radiation cystitis (ok now) and vaginal stenosis resulting in the end of my sex life (sad). Ask about status of your bones. 

zsazsa1
Posts: 314
Joined: Oct 2018

Sorry, the website crash wiped out my bio, and I cannot figure out how to redo it!  I had CT of chest, abdomen, and pelvis 9/17/18, before surgery, no mets identified, a couple of tiny nodules in the lungs that were felt NOT to be cancer.  I'm scheduled to have a f/u chest CT very soon to make sure the nodules didn't grow, and I managed to browbeat the oncologist into adding abdomen and pelvis CT too, to make sure of no distal mets before radiation.  I keep on asking about PET/CT, everyone keeps on saying not really necessary to have PET, too much radiation for very little more info, that CT will be good enough, that it will be an insurance battle to get PET/CT.  But yes, I had thought about that, that I do NOT want to have the radiation done if I already have distant mets. 

lovemyhubby
Posts: 26
Joined: Jan 2018

The tumor board recommended Chemo and external radiation. I disliked but managed chemo. I was really hesitant about external radiation however because of all of the long term side effects. My rad once told me it would give me the best chance to avoid a recurrence and that long term side effects were highly unlikely. I finished radiation treatment in May 2018. Diagnosed with radiation cystitis in August. The symptoms continue to worsen and honestly I am pretty miserable. I have an appointment with my urologist and rad onc soon and we will be discussing hyperbaric oxygen therapy. I don’t want to scare you. I just got unlucky

pinky104
Posts: 574
Joined: Feb 2013

I'm starting high dose radiation tomorrow.  i brought up the problem of radiation cystitis since several of you have mentioned having it, and I already have a history of frequent UTI's.  The radiation oncologist thinks he can aim the beams of radiation so they won't hit the bladder.  I hope he's right.  I'll be having chemo after the radiation, but will have three drugs instead of my usual two that I've had both previous times.  They're hitting me with the cannons this time, not just the big guns.  I stocked up on Depends, applesauce, bananas, and Benefiber today.  I forgot the Immodium, but I already have a new box that will get me through a few days at least (I hope).  I'm not looking forward to seeing what kind of side effects I get from all this stuff.  

barnyardgal
Posts: 208
Joined: Oct 2017

The reason my doctor likes the PET is she feels the CT scan shows things that aren't cancer, but can cause undue alarm. For instance, I had my surgery Octovber 2017, and finished my last chemo June 2018. The CT scan at the end of July showed a bump on the vaginal cuff. The radiologist thought it was just healing, but my gynecologist oncologist said maybe it's that, but maybe it's a recurrence. She wasn't terribly worried, but enough that I had a PET in October. The vaginal cuff was fine, and it was finished healing. She wants me to do a PET once a year for the next few years take sure it's ok,and doesn't want to bother with the CT scan. Just my experience.

zsazsa1
Posts: 314
Joined: Oct 2018

And my oncologist doesn't want to do ANY scans, says they're not proven to extend survival, and of course are radiation exposure.  I managed to browbeat her into CT at end of chemo, and she said that's it, no more.

CheeseQueen57's picture
CheeseQueen57
Posts: 797
Joined: Feb 2016

Stage 3c, Grade 3. My doctor did CT every 3 months. If she hadnt done them we wouldn’t have found my reoccurence (peritoneal) 8 months after finishing treatment. I had no symptoms. 

BluebirdOne's picture
BluebirdOne
Posts: 194
Joined: Jul 2018

I started a new topic on scans and recurrence. 

 

Denise 

Tamlen's picture
Tamlen
Posts: 192
Joined: Jan 2018

Would you be willing to post this really good question as its own thread, so perhaps more of the ladies see it? It would be interesting anecdotal info for us to have.

BluebirdOne's picture
BluebirdOne
Posts: 194
Joined: Jul 2018

I was wondering about that myself as I didn't want it to get lost. I will repost. 

barnyardgal
Posts: 208
Joined: Oct 2017

My Dr said that the guidelines for 3a is no scans. She doesn't agree with that, and thinks it's worth doing it, once a year anyway.

LisaPizza's picture
LisaPizza
Posts: 208
Joined: Feb 2018

Current guideline for easy reference for all ...

 

For patients with treated FIGO stage III-IV disease optional chest / abdominal / pelvic CT every 6 months for the first 3 years and then every 6–12 months for the next 2 years.

 

So far I'm having one every 6 months (stage 3a). I have mixed feelings about that. It can sometimes be as hard to turn down tests and treatments as it is to accept them.

Soup52's picture
Soup52
Posts: 900
Joined: Jan 2016

I’ve had all of it and some effects intestinal but that could be from adhesions etc. I’ve commented about all of this on other posts so people are probably sick of hearing about this. Long story short I didn’t have time to debate my treatments and my cancer center does radiation before chemo or the sandwich treatment. My results after everything over 2 years grade 3 3C so I, happy.

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