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1B3 - 2nd opinion slight different about radiation - internal vs external

woodstock99's picture
woodstock99
Posts: 96
Joined: May 2021

My GO post-surgery and final path recommended 25 external radiation treatments for 1B3 EC no lymph involvement pelvic wash clear etc.  I sought second opinions.  I had one yesterday and the GO said to do inernal radiation instead. She acknowledged there is limited data spefically on 1B3 with no lymph node involvement and it is often lumped with other high intermediate risk patients.  She said she reviewed findings as well from Mayo & MSK that compared patients with these findings to determine if pelvic radiation added benefit to brachytherapy alone and that findings did not show clear differenc in progression or overall survival.  She said both are standard fo care for my stage of disease. 

She did not have my slides yet - they came after our call - so we left it tht she would review them and also present my case TO THEIR board on Thursday and follow up with me on Friday.  She said in my scenario there is no right or wrong answer and that recommendations are based in balancing risks and benEfits based on patient goals. Obviously less risks/side effects with internal vs external.  Also she said that for surveillance they just do exam - no scans every 3 months vs origonal GO.  She said they find local recurrence through exams and do scans if symptoms present.  I just donlt know what to do. 

I have one more online opinion coming but it's been delayed and I hope to have by Friday.  I just don't know what to do.  Obviously I would prefer to do less for almost same benefit and keep external if needed for future.  I also am not crazy about so much radiation adn stress every 3 months with scans.     I had spoken to a doctor friend (not oncologist) who also has cut back on regular scanning. 

I know none of you can make this decision for me but wondering if anyone was in same situation and what you chose and why.  I am also wondering if the vaginal stenosis tighetening etc is worse with internal vs external or same?  If you have interbnal can they sedate or numb you in any way.  Having not had sex in years and pelvic exams are painful I am terrified of that process from the pictures I have seen.

And if I decide that I would rather do the internal but stay with my oriiginal GO & RO who are local vs travelling to another facility (she knows I am seeking second opinions) how do I have a dialogue about this as well as surveillance without ongoing scans.  Will they decline to treat me?   

I have to make a decision by this wekend as tomorrow is 4 weeks from surgery and I need to move forward with treatment.  Thanks for any help with thjis.  I apologize for overposting lately.  I feel like I am having a meltdown.   

 

 

Forherself's picture
Forherself
Posts: 559
Joined: Jan 2019

https://www.nccn.org/professionals/physician_gls/pdf/uterine.pdf.  If you can copy this link it gives the NCCN guidelines for grade 3 limited to the uterus.  We cannot advise you but I can tell you why I decided against treatment.  It is a surprise to learn that the patient has to make these decisions, but it is you who have to live with the consequences, and no one really knows the correct answer.  Cancer can have so many mutations, and our immune systems can be very different.  There are many unknowns.  And because it is a rare cancer, they lump different grades together sometimes and that really gives false results in my opinion.  For my situation, no treatment is an option, even though I had high grade cells.  I was told that even if I had treatment I could recur.  Serous endometrial epithelial neoplasm usually recurs outside the pelvis.  My chance of recurrence is about 5%.   I have disease confined to a polyp, no LVSI.  I chose no treatment.  That was 3 years ago.  There are so few cases that no one knows if we need treatment.  I study of 20 women who have what I had did not recur.  But there are cases that have.  So, based on the risks of radiation treatment, I decided to not have treatment. I do not have scans or CA 125.  This makes some people nervous.  But whole radiation treatment is not without risk.  I don't think there is a right and wrong answer at this point.  It is a choice of what you can live with.  Personally I would not make a decision based on the pelvic discomfort.  The can work with you on that.

Harmanygroves's picture
Harmanygroves
Posts: 217
Joined: Jun 2021

I was very unhappy about anything going into my vagina, as for several years I've had painful penetrative sex, and complained about it frequently to my doctor, then my new doctor when I dumped the one not listening. 

If you have someone take you to your (internal) brachytherapy radiation appointments, you can certainly take sedative and/or Ibuprofen to ease the way, and I would certainly not choose external vs. brachytherapy because you don't want to have the radiation carrier in your body for ten to fifteen minutes. 

I'll add that my team was very considerate and gentle with me because (like you, no doubt), I was very unhappy about the whole idea of the procedure. It was not as bad as I thought it would be. I will add that on the 5th treatment, I did become very ill, but I think that is normal for many people with any kind of radiation therapy.

 

<3 Deb

woodstock99's picture
woodstock99
Posts: 96
Joined: May 2021

Thank you.  I had BC almost 6 years ago and it was just a (seemingly) eaiser path and jourbney for me overall with less unknowns.  I guess because it is a different cancer perhaps and my diagnosis was more clear cut.  This is amking me crazy.  Analysis paralysis and so much fear.  I am hardly sleeping.  I am crabby and cranky.  I am usually a quck decision maker and fact based but I it is so hard for me to weigh the benefits vs the risks and I get different % of recurrence reduction doing treatment vs not from each doctor. Why would I get a different %% from GO vs RO?  How subjective is all this?   

Harmanygroves's picture
Harmanygroves
Posts: 217
Joined: Jun 2021

I would propose that given that your sleep is suffering, and you are feeling stressed about this decision, that you take action on things that will help you right now. Can you get a prescription for some sleeping medication, or at the very least get some melatonin?

Next, I was getting absolutely sick of hearing different percentages from my gyn onc vs my radiation onc in terms of recurrence. 

Remember: they will not always be absolutely clear between a. local recurrence at vaginal cuff vs. b. distant recurrence. You need to practically square up on them, but do remember that their percentages are often pulled from memory. If this, then that. If this, then that. They have the same charts and predictive information as is available in many sources online. 

I just pulled up the OHSU Nomogram and compared my risk of recurrence, comparing brachytherapy versus EBT. There was a one-percent difference. I'm exhausted today because I did get pretty ill after my 5th brachytherapy, more so than is usually expected (according to my doctor and her nurse). Husband and I kind of hit a wall. However, we are okay with decisions we have made so far. You aren't there quite yet, but you're much earlier in the process, I think.

I think that if you can get some sleep and escape the stress for a bit, you'll feel better no matter what your decision. For me, I do my best with research, and then make a decision based on the general opinions of the doctors. My situation isn't the same as yours, but given that the EBT effects would have been harder on me, and not yielded significantly greater (better) results, I went with brachytherapy. Hopefully, that will turn out to have been the right decision. I've had to come to terms with knowing that I can't predict everything that may happen down the road. I think that's the biggest challenge of survivorship. 

I sure hope you can get some much-needed rest, dear Woodstock!

 

 

woodstock99's picture
woodstock99
Posts: 96
Joined: May 2021

Thank you.  You are so right.  I had my inital external appt scheduled for Monday - the one where they do the markers, tatooios, etc.  I just moved it to Thursday.  Since I am not getting final second opinions until Friday and need to think on them and then talk to my orginal GO and didn't want to cancel last minute.  I just feel like I wnat to run away right now!  I apprecuate your empathy.

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