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Preventative radiation or vaginal cuff surgery? Any advice?
My cancer journey started in 2014 when I was diagnosed with cervical cancer 1b2. I had an open modified, total hysterectomy with lymphectomy, minor vaginectomy during the vaginal cuff process and ovary transposition. At the time they anticipated I would need radiation but because my post surgical biopsies came back better than expected, it was determined best to hold off on any additional treatments at that time. In 2016, VAIN3 HSIL lesions were discovered in the upper left corner of my vaginal cuff and was ablated. In 2021, again VAIN3 HSIL lesions were found in the upper left corner of my cuff area, none found to be malignant, and all were excised, the area cauterized. This June, once again they found HSIL VAIN3 lesions in the exact same area. Initial test results showed signs of an Invasive malignancy this time but thankfully it seems like they were able to once again excise/ablate everything during the biopsies surgery. They did biopsies in several other spots of my vagina, including my peritoneal area and thankfully the rest all came back clean. But it is obvious that I have a hotspot in my vaginal cuff that is just going to keep spitting out these lesions.
So my post-op appointment for my biopsy surgery is September 1 and my oncologist and I are supposed to discuss the options recommended in his conversations with the tumor board. So far my options are Option #1 - have another surgery to surgically remove the area of my vaginal cuff (I don’t know if it will be just the corner or the whole cuff) and reclose the area. Now I know from doing research that there is a good chance that there is cervical cancer cells that had infected my vaginal area (that’s why they had to remove part of my vaginal before making the cuff in the first place because the cancer had already spread there) and could have become trapped into the cuff area where it is nearly impossible to see them and they are free to keep developing. Which is makes this option makes sense. But my Oncologist already mentioned in our brief phone call that every surgery in this area can risk damage to my bladder and my ureter. Option #2 - Radiation. That’s all my oncologist told me during our phone call. Again from doing my own research and following this board, I am guessing it will be internal because my trouble spot is SO specific. But I have no idea what to expect.
I am so grateful that I have the opportunity to stop playing defense and to go on the offense with this stupid cancer. But I don’t know what questions I should be asking at this point. I am leaning towards the radiation. What should I prepare myself for?
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Hi @luckyme13, I moved your message to the Gynecologic Cancers Support Group here https://connect.mayoclinic.org/group/gynecologic-cancer/
I'm tagging @jeanadair123 @ejohn @cmb2022 @cancerback and @naturegirl5 who may have faced similar treatment decisions with involvement of the vaginal cuff and surgery vs radiation.
You're so wise to reach out to the group as you prepare for your consultation and gather your thoughts and questions beforehand.
The questions I'll throw out there are probably obvious and you've already got them written down, but here it goes:
1. What are the risks and benefits of each treatment option?
2. What are the side effects of each? And recovery time?
3. If radiation, why type of radiation?
What questions have you gathered so far?
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2 Reactionsluckyme13 @luckyme13
Hello and I am so sorry you are facing this journey yet again. My cancer was adenocarcinoma stage 1a, Figo grade B with positive pelvic washings. I was told in Feb 2022 at the time of my surgery that no treatments were necessary. In Sept 2022 a new tumor was found on the vaginal cuff during a surveillance exam. I was told that the best treatment at that time for me was radiation and my team decided on 28 external beam treatments (you lay down and a scanner type machine circles you a few times for a matter or a few minutes). It doesn't hurt a bit, but you can have some side effects such as diarrhea). Then I had 3 brachytherapy treatments (internal). They consisted of a probe being inserted into your vagina and then a quick scan to make sure it was in place and then a longer (maybe 15 minutes) more intense delivery of radiation to the exact area(s) needed and a dose to rhe surrounding tissue to kill anything lingering. I felt worse with a UTI and (gastroenteritis) after these 3, but recovered in a matter of weeks. I nearly forgot to mention the fatigue that comes with the treatments atleast for me, but that too.
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1 ReactionThank you Colleen!
I apologize for not replying sooner and I appreciate you question suggestions. Questions I had listed to ask was about the possibility and effectiveness of getting the HPV vaccine since I have never gotten it and all of my issues have been HPV16 related. If there were any other treatment plan options besides just those two. With the different radiation options, what would my level of incapacitation be, specifically would I be able to still work on radiation days?
I had my appointment yesterday and it was good and frustrating. My oncologist and I agreed against the surgery, especially since I’ve already had minor urinary issues since my hysterectomy. So risking those complications for another vaginal cuff surgery that clearly wasn’t all that effective the first time didn’t sound worth it. But he then said he could either refer me to a radiologist for brachytherapy or we could hold off on any treatment and “wait and see how things develop”. I asked for the referral. Am I nuts to want radiation? They planned to do it when I had my hysterectomy in 2014, that’s why they moved my ovaries, but my post surgical biopsies were better than expected. So we decided to hold off on radiation and wait and see if we needed it. Then lesions came back in 2016, 2021, and now. And each time I’ve heard, well we could just wait and see. I’m over it. I’m done having my life turned upside down every handful of years. If there is potential to stop this or at least slow this down, I want to try it. Because this “wait and see” method hasn’t worked.
So aside from the fact that I am being referred to a radiologist and my oncologist is suggesting brachytherapy, I really know little else. But I did get the first shot of the HPV vaccine. I am going to attack this every which way I can.
@luckyme13 I can "hear" the frustration in your post and understand why you are tired of the "wait and see" approach. Do you already have an appointment with the radiation oncologist? It seems to me that it's worth the time to see the radiation oncologist and get their opinion and information on this approach. You can then ask the questions again that Colleen posed in her post at the beginning of this discussion thread.
Are you in the U.S.? If so, are you getting your care at a cancer care center that is collaborative? I'm asking this because it helps tremendously when care providers work together in a collaborative setting. Here is the listing of National Cancer Institutes (NCI) Designated Centers where is a collaborative approach to cancer care.
NCI-Designated Cancer Centers:
-- https://www.cancer.gov/research/infrastructure/cancer-centers/find
I had a recurrence of endometrial cancer found on the vaginal cuff (first diagnosed in 2019 and I had a hysterectomy) in 2021 and had 28 sessions of external beam radiation and 2 sessions of brachytherapy. I had very few side effects which included the expected fatigue and occasional diarrhea. It’s been almost two years since the radiation and I’m headed for my next cancer surveillance appointment next week at Mayo Clinic.
What questions will you ask the radiation oncologist?
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