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Vaginal Surgery? And Radiation question related

CancerFree4ever's picture
CancerFree4ever
Posts: 8
Joined: Sep 2019

I am 63 now.

In 2017 I was diagnosed with Endometrial Adenocarcinoma. I had been spotting and bleeding for quite a while prior to discovering this news, and appeared, even at sixty, to have period aches and symptoms. My life marched on, as I was overseas caring for my Mum, so my health, while in need of attention, as a good old Irish woman I plodded on.

When I went for a very needed physical, I told my GP about my symptoms........as she walked out the door after the physical and said, "Is there anything else you need to share with me about your health." It was then I remembered the spotting, and clotting. And to her shock, sat down to inform me of the abnormality of that symptom. This led to my seeing a Gyno, who after an ultrasound declared that the lining of my uterus was at 20, as opposed to a normal much lower range for my age. She didn't pull any punches, and insisted I needed a biopsy. I almost refused, because I was about to move overseas to be with my family. 

A friend encouraged me to do the biopsy, which I dreaded, as I knew there would be no sedation or anesthetic for the procedure. I dreaded it, but went, and it was not bad at all. In fact, it was very tolerable. Some days later, I received a call from my Gyno, it was cancer. This led to a consult with the best Gyno Oncologist in the field in my area. I went through Robotic surgery, total hysterecomy on Nov 15, 2017. God brought me through that, and I awaited the pathology report. It was a stage 1, and the whole area around the surgery area came back as totally clean. No lymph nodes removed showed any spread. My recovering was very good.

Since then I have had 3-6 month checkups. All has been clear. But, this last month, they discovered a small lesion in my vagina, a ways down from the vaginal cuff. I went through another biopsy, and sure enough, after waiting 2 weeks for the results, it is the same type of cancer, and still considered a Stage i recurrence. I had a PETscan, waited for the results for just a day, and it came back no spread. Two of my lymph nodes on the left side under my jaw however are inflamed, and being questioned mainly for infection. I have had sinus problems, thick drainage at times and a bad taste in my mouth in the mornings. I have been to an ENT a couple of months ago, and he gave me the all clear, except he felt I may have a deep sinus infection. The scope down into my throat, to my voicebox showed nothing wrong. He said he didn't see any ENT problems. I will see another ENT in the following weeks.

My Oncologist decided against any surgery. My spot, now called a tumor, is in the vagina near my bladder. If he did surgery it would mean the removel of my bladder and bowel. Does anyone know why others receive surgery with vaginal cancer tumors and don't have their organs removed?

The concern is due to the fact that the tumor is down from the vaginal cuff.......not the normal place to go. I think even my Oncologist is somewhat surprised since I was all clear at surgery. I have never had any other tests run for this type of cancer after surgery, received no treatment etc. I did have a CT scan over a year ago to make sure I was not someone who would get Anal/Colon cancer. This was due to the fact that last year my Dad was diagnosed with stage 4 anal cancer. My test came back clear, and I was not genetically affected by the cancer I had surgery for. I had the test done to confirm this, so that my brother and my daughter would know to be attentive to their health, as Endo Adeno can spread to the colon and of course the female organs. 

Sorry this is long, but I wanted to share my history of successful surgery and recovery.

Now I am facing what my Oncologist feels is the best plan. That being 25 rounds of pelvic radiation. The Radiologist also suggested Brachetherapy, but I am questioning that second treatment, not because I am unwilling, but because I do not want to take on unnecessary radiation if it is not truly needed.

Questions:     Why would vaginal surgery be out, and what has been your experience in relation to this, if you have been faced with a similar situation?

                     I was told about the side affects of Radiation, both now, and in the future, and many things that can go wrong with the side affects becoming bad later. What have you done to build up your immune system, and not only prepare for the radiation, but also for future days? I have been on probiotics anyway for some weeks, before I knew the news, also natural things such as vitamin D for the bones. Does anyone have more suggestions for how they made it through this, especially like me if they had a low immune system going into the treatment. This is due to losing my two parents overseas in the last three years and my own surgery.

                     If you are stage 1, has anyone NOT done suggested Brachetherapy , but obviously done the other radiation? My Oncologist never mentioned Brachetherapy to me, so I will have to discuss this with him, prior to that time the Radiologist wants to do ut. I guess I would want to know if it should have been done after my surgery, rather than playing catchup now when I have a recurrence of the disease? 

                     After your total hysterectomy, did anyone have a PETscan on your first 3 month checkup or thereafter? Or are only pelvic and pap normal for consistent follow-up with no blood tests or scan?

I am sorry this is long, but I know there is a wealth of knowledge out there from cancer survivors, and while I was told there is a 80-90% cure rate on my situation, I want to make sure I am not adding further damage to my body down the road, at least unnecesary ones.

God has been so good to me. He is my strength. I pray you are all knowing His peace today.

Donna Faye's picture
Donna Faye
Posts: 255
Joined: Jan 2017

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.

 

CancerFree4ever's picture
CancerFree4ever
Posts: 8
Joined: Sep 2019

Thank you so much, this is extremely helpful.

All the best in your journey also!

MAbound
Posts: 874
Joined: Jun 2016

Hi Cancerfree4ever,

welcome, but sorry you had need to find us. You ask a lot of good questions, but unfortunately because there are so many variables to this cancer and how it gets treated, odds are that you are going to get a lot of different answers and you have to bear in mind that none of us are doctors here. We all bring unique circumstances to the table and different doctors have different philosophies and approaches to combating cancer, so while we can share what's happened in our own cases, they won't necessarily provide difinitive answers for you.

First of all, did you ever move to Europe or are you in the United States? What makes you say that your immune system is compromised? Low white blood counts? Taking probiotics now and during radiation is very helpful, especially as regards the diarrhea it causes for many, but also being up-to-date for vaccinations for flu, pneumonia, and shingles helps, too. Consult with your oncologist first if you haven't had them yet. There should be no problem getting the flu vaccine because they don't use a live virus, but I can't remember about the other two. Also be sure that you are getting enough protein in your diet as that is important to immune system health, too.

What kind of testing gets done following front-line treatment is going to vary from one doctor to the next. Some are minimalists, some cover their behinds, and sometimes what insurance will cover dictates what gets done.

Given that you are having a recurrence of your original cancer in the vagina, it does sound like having brachy is indicated for you as the direct means of treating it. It's easier to target that location that way. I'd look at the the pelvic radiation as back-up insurance for the brachy just in case the cancer has had a chance to spread from that vaginal tumor, but chemo could be another and maybe even better option for that purpose. It probably depends on if you are talking to a medical or radiation oncologist.

You are right to want to keep radiation exposure to a minimum, but as much as the potential side effects scare you, it would be a mistake to try to talk your way out of it with your doctors. Your life is at stake. It would be better to go and get 2nd and even 3rd opinions to see if there is a consensus that would reassure you that you are following the right path. We all struggle with having radiation because the side effects have the potential to be life changing, but you have to remember that they don't all happen to all of us. Many get through just fine, but some develop issues that vary in severity. What you read on this site is a bit skewed from reality because women who've suffer from bad side effects still come here for support while many of those who didn't have moved on with their lives. You have to be informed of all of the possibilities, though, because of how litigious everybody is if all the i's aren't dotted and t's crossed.

If you do go for additional opinions, be sure to ask if some of the tumor could be taken before radiation for genomic testing. This wouldn't be possible to do after radiation. You'd need to be prepared to pay for this out-of-pocket because most insurances don't like to cover it, but it could help to save your life should you need more than radiation. Genomic testing can point the way to which treatments would be most effective over others and aid in eligibility for some of them. Given that you now have a metastatic cancer, you really need to put your battle armor on and fight this with all you that you can.

I can't say why you are being told vaginal surgery is out. Getting additional opinions or asking your current oncologist to explain that would be the thing to do.

Good luck and feel free to ask about anything else.

 

 

CancerFree4ever's picture
CancerFree4ever
Posts: 8
Joined: Sep 2019

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.

 

MAbound
Posts: 874
Joined: Jun 2016

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. 

Forherself's picture
Forherself
Posts: 231
Joined: Jan 2019

To answer some of your questions a little more information would help.  Did you have Grade 1 or 2 or 3 on your first biopsy?   And did you receive any treatment after your first surgery?   Are you familiair with the terms endometrioid and serous carcinoma?   Can you tell us if you had either of those?   Do you know the size of the recurrence in your vagina?   Answering those questions will help get better answers.  And do you know if it was 1A or 1B stage.   It seems odd to me they would say surgery would require the removal of your bladder and bowel.  If that is the case, a second opinion would defnitely be a good addition.

 

CancerFree4ever's picture
CancerFree4ever
Posts: 8
Joined: Sep 2019

Hi Forherself

I had grade 1A Stage Grade 1 on first biopsy. Received no treatment after surgery. 

Yes, I had endometroid adenocarcinoma.

Size of recurrence, tine...... .4

No surgery because the tumor is right beside the bladder, in the vagina.

:)

 

Forherself's picture
Forherself
Posts: 231
Joined: Jan 2019

Gosh that is frustrating.  You have the least aggressive kind of cancer at least.   I think the reason they do EBRT first is to eliminate the possibility that cells have moved into other areas.  They can move but not be tapped in to your blood vessels or lymph system but left untreated can create those connections.  I think they want to kill off any stray cells with the more general treatment first.  They are trying to make this your last recurrence in my opinion.

There are other women who have faced this dilemna.  Zsa zsa is one.  You could read some of her posts.

Kathy G.'s picture
Kathy G.
Posts: 210
Joined: Dec 2012

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's picture
CancerFree4ever
Posts: 8
Joined: Sep 2019

Hi Kathy,

Thank you for your input.

I won't be doing surgery, due to the fact that the very small tumor is in the vaginal wall side of the bladder. 

I had a full hysterectomy, so no uterus or anything.

So so glad you are one of the success stories of 6 years out. Thank God for that.

Stay vigilant. That is the key. I would not have known about this, but I had a gal who did a thorough exam, and found it. She was the PA to my oncologist. He even found it hard to see after she had found it. It was that insignificant.

All the best.

 

MoeKay
Posts: 217
Joined: Feb 2004

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's picture
CancerFree4ever
Posts: 8
Joined: Sep 2019

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 

CheeseQueen57's picture
CheeseQueen57
Posts: 815
Joined: Feb 2016

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

MoeKay
Posts: 217
Joined: Feb 2004

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. 

CheeseQueen57's picture
CheeseQueen57
Posts: 815
Joined: Feb 2016

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

MoeKay
Posts: 217
Joined: Feb 2004

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!

 

 

 

Denise66
Posts: 58
Joined: Aug 2018

I’m sorry you are going through this again.  Initially you had grade 1, stage 1A endo.  Did you have LVSI or a positive pelvic wash?  Was your tumor tested for P53 or P16?  With this new tumor what grade is it?  Hopefully it is still a low grade - grade 1 or 2.  I would def recommend Brachy. Have You sought a second or third opinion?  Also, I would think if your Pet is clean your nodes are not related to this cancer?  Did your doc conclude thus? 

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