Vaginal Surgery? And Radiation question related

You can read my info and my posts but I had UPSC 1A in 2017 - chemo and 4 Brachys. Recurrence in 2018  - lesion on side of vagina - not usual! Had 25 pelvic rads, then 4 more Brachys. Did well for so much ( am 79) but Oct.1 CT showed golf ball mass of fluid in posterior of vagina. Just had exam in OR, the blood sac removed and vagina clear. I would go for radiation anytime over removing or operating on bowel or bladder. I am older than you and this may impact your decision but that is how I feel.

Hi & welcome!

The varied treatment strategies different oncologists use always amazes me, but there does seem to be some standard treatments used for your type, grade & stage of cancer.

I was stage 1 & grade 1. Cancer only penetrated 11% of omentum. Only surgery & follow up appointments were required like yours: 3 month intervals the 1st year, 6 months the second & yearly the 3rd, 4th & 5th years.

I have read where some ladies were recommended for short term brachy treatment with a similar diagnosis to mine, but it was not ever suggested to me.

They told me chances for reoccurence were during the 1st 2 years, but also pointed out that because my cancer was so early stage and invasion of the cancer so minimal that my chances were very minimal.

Thankfully they were right as I am 6 years out.

However, I agree with the suggestions to get other opinions regarding your treatment options and look for common threads in advice. Then go with your gut. You are now experiencing a reoccurence so you want to be thorough in researching your options.

And personally I would avoid bowel or bladder surgery unless 100% necessary. I have read too many stories on here & elsewhere about complications with these areas due to how close they are to the uterus. Sometimes treatment affects them...sometimes not...or the cancer spreads. I had a relatively early recovery except for the worst bladder spasms! I can't imagine dealing with surgical side affects from operating directly on my bladder or bowel.

Best of luck with the decision making process. Come back and let us know how you are doing.

CancerFree4ever said:

Clarification and opinion

Hi MABound......I so appreciate your input, it is very helpful.

The radiologist plan, for this small tumor is 5 weeks M-F radiation, THEN Brach. And that is where I am confused, since the PETscan shows no mets anywhere else except that tumor. My question to myself is.....Would Brach not be the least damaging first, and see what that does, then as you say FOR INSURANCE, I would have the Full on radiation 5 weeks treatments. Instead, the Radiologist is suggesting Full on radiation to the pelvic area, then Brach.

I mentioned about my immune system, not because of blood count, but because of the stresses I have been through outside of cancer, and I knew I was wearing down......normally a very vibrant individual. So, I am on some things to build my immune system, ready for the additional fight.

No surgery because te tumor is right beside my bladder, opposite side of the vag wall.

Already had the testing, and waiting results of that in the event I need it. Just happened to be a free research going on at the time when I was diagnosed of recurrence.

Thanks for responding with such information that is helpful and knowledgable. 

All the best to you.

 

Doing any external radiation (pelvic) before internal radiation (brachy) is done in that order as standard practice. I'm not exactly sure why it is, but I suspect it has something to do with dosing and allowing the body to recover as you go through it all. It would be an excellant question to ask your radiation oncologist and come back to share the answer with the rest of us. I'm surprised that question has never really come up in the three years that I've been here, but it's a really good one and I'm sure I'm not the only one curious to know the answer.

Here's  a really helpful link about the different types of radiation therapy and ways it can be delivered:

https://www.cancer.org/treatment/treatments-and-side-effects/treatment-types/radiation/external-beam-radiation-therapy.html

You usually get a good instructional sit down with your radiation oncologist to discuss your plan before radiaition starts and this link may help you to know questions to ask ahead of time and understand the answers you get. Maybe you are past that already, but there's nothing to say that you can't ask for another consult to get it all clear in you mind before agreeing to treatment. It is a big, scary decision, but it's also a big scary recurrence for you. You've got to do what you've got to do before it gets out of hand.

I also had endometrial adenocarcinoma at diagnosis. Stage 3a, grade 3. After chemo, I had 5 1/2 weeks of pelvic radiation delivered by 3D-CRT followed by an external vaginal boost (I had clear vaginal margins and no tumor in the vagina needing eradication like you do). I was 59 and the side-effects for me were fatigue, constipation (because of rectal/colon inflammation and swelling), and a steadily dropping white count. My other blood counts dropped, too, but it took until 6 months after radiation for it to get back to normal. I was pretty much housebound during that time to avoid a bad year for flu. I couldn't even travel for my dad's funeral because he died from Norovirus just as I finished treatment. Most people seem to get diarrhea from RT, so my issues with constipation were more the exception than the rule. 18 months after RT I developed a late occuring side-effect of diarrhea that was terrible for about 6 months, but I've slowly improved to where it's not too much of a problem for me now. We all react differently to treatment because we are unique from each other, but your younger age should be a point in your favor for how you get through this.

You don't mention here what you are taking to help your immune system, but I would make sure that your doctor's are aware of every little thing that you are taking whether it's prescription or OTC.  It's surprising what can help or hinder treatment and if you are going to go through with any of it, you want it to be as effective as possible. Save things like anti-oxidants for aftterwards because, like chemo, radiation is designed to target cancer cells when they are at their most active. 

Hi CancerFree4ever,

Have your gynecologic oncologist and radiation oncologist had a discussion about their differing views on your radiation treatment plan?  When I was diagnosed with endometrial adenocarcinoma, my gyn-onc explained the various post-surgical scenarios to me.  He advised that some women need no radiation, some need external radiation, some need internal radiation, and some need both.  After my surgery, my gyn-onc told me that I fell into the category needing both internal and external.  Due to the distance of my gyn-onc from my home, I consulted with a rad-onc at another facility.  At my consult with the rad-onc, she only discussed my need for external radiation. I told her that my gyn-onc had recommended both types.  My rad-onc said that she would speak with my gyn-onc and discuss their seemingly conflicting assessments of my case. 

After the two oncologists spoke, it was decided that it was in my best interests to have both internal and external radiation.  The reasons my gyn-onc felt that I needed the internal radiation was due to the fact that my fairly large tumor (approx. 4 cm.) was very close to the cervix, having arisen in the lower uterine segment.  Therefore, I was at an elevated risk that any local spread might occur in the vagina, and that the internal radiation would provided added reassurance that the vagina was being effectively treated.  I also had a deeply invasive tumor (approx 80% myometrial invasion), extensive lymphvascular space invasion (LVSI), and my tumor was a grade 2. 

I think you need some guidance from your treatment team on their thought process for the conclusions they reached on your radiation treatment.  I would think with a vaginal recurrence, that brachytherapy sounds reasonable.  However, I think you need more insight on how and why your two doctors reached differing conclusions.  If I were in your situation, I would also think about getting a second opinion to provide me with reassurance that I was making the best-informed decision possible. 

One final note, has there been any mention of chemotherapy in your discussions with your gyn-onc?  I know when I was treated 20 years ago, chemo was not the standard of care for early-stage endometrial cancer.  However, chemo has become more common in recent years.  The reason I ask about chemo is due to the fact that you said your tumor is not near the vaginal cuff, but further down in your vagina.  I'm wondering outloud whether the tumor could have arisen not from spread from adjacent tissue, but rather through the lymph or blood system.  Given that open question, I would think I would want to have a discussion with my treatment team on the benefit (or not) of chemo in your particular situation.

Wishing you all the best.

CancerFree4ever said:

Thanks

Hey Moe

Thank you so much for your great info.

I don't think it was that the Dr's didn't agree, it's just that my Oncologist never mentioned Brachy. And, I have since heard that for my size of tumor, unless they discover on the MRI that is is a lot bigger, it seems Bracky would be a good start, and reserve the full on radiation for IF I need it. I will be talking to my Radiation Oncologist tomorrow for further claroty, and asking my Oncologist for confirmation of this Brachy after the heavy radiation. I have CT Simulation tomorrow, a CT for my two lymph nodes on my neck on Monday, and trying to find an open MRI location for next week.

By the way......how long did your Pelvic MRI last for the time they tried to determine size and thickness of the tumor you had? Being claustrophobic.........to the highest level, I am trusting I cam able to have the open MRI. 

All the best to you too in your journey 

I was told by my doc that open MRIs aren't as accurate. Maybe some Zantac?

CancerFree4ever said:

Thanks

Hey Moe

Thank you so much for your great info.

I don't think it was that the Dr's didn't agree, it's just that my Oncologist never mentioned Brachy. And, I have since heard that for my size of tumor, unless they discover on the MRI that is is a lot bigger, it seems Bracky would be a good start, and reserve the full on radiation for IF I need it. I will be talking to my Radiation Oncologist tomorrow for further claroty, and asking my Oncologist for confirmation of this Brachy after the heavy radiation. I have CT Simulation tomorrow, a CT for my two lymph nodes on my neck on Monday, and trying to find an open MRI location for next week.

By the way......how long did your Pelvic MRI last for the time they tried to determine size and thickness of the tumor you had? Being claustrophobic.........to the highest level, I am trusting I cam able to have the open MRI. 

All the best to you too in your journey 

Hello CancerFree4ever,

I never had either a CT scan or pelvic MRI before my radical hysterectomy.  The specifics about my cancer, such as tumor size and depth of tumor invasion, were determined interoperatively and confirmed by pathology.  That also reminds me of another point I wanted to mention.  I sent all my slides to another institution for a second pathology review.  I'm wondering whether you might want to think about getting a second pathology review by a gyn pathologist  just for confirmation purposes.  I remember reading an article years ago stating that gyn pathology has one of the highest error rates of all types of pathology.  The way I feel is that it can't hurt to make sure there is no question about what you're dealing with before undergoing invasive cancer treatment. 

Keep in mind that I was treated in 1999, when not as many scans were being performed as they are today.  However, early last year I had MRIs of the abdomen and pelvis, with and without contrast, for urologic issues.  My urologist had wanted CT scans, but I persuaded him to order the MRIs because I didn't want the additional radiation if I could avoid it.  I was so happy to be able to get the MRIs that I can honestly say they were not bad at all.  And I'm somewhat claustrophobic myself.  Also, as CheeseQueen mentioned, you can certainly request medication to help you get through the test more comfortably.  

Good luck and good health!

MoeKay said:

Maybe you mean Xanax?

Hi Cheese, Zantac is for heartburn, maybe you were thinking of Xanax for anxiety?  The other anti-anxiety medication that comes to mind is Ativan. 

Yes.  Or Ativan. That's what I used. Sorry.