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

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 said:

Yes, from the studies it

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.

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.

lovemyhubby said:

The tumor board recommended

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

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.  

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 said:

And my oncologist doesn't

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.

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 said:

I question that as well.

I started a new topic on scans and recurrence. 

 

Denise 

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.

Tamlen said:

This question warrants its own thread

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.

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

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.