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Radiation instead of surgery? Hoping for input by Sunday 3-19-17

Efte
Posts: 2
Joined: Mar 2017

It started with high platelets in 2014 and about the same time I started having minor abnormal discharge and a little spotting between periods. I went to an oncologist who ruled me out for one of the genetic variants for essential thrombocythemia and decided it was an iron deficiency. I told him about the discharge and spotting, but he said it was normal. The discharge and bleeding have progressively gotten worse over time. My doctor's P.A. kept testing me for STDs and finally ordered a transvaginal ultrasound in August. I bled all over that table, but they said it came back normal. By November I was having nearly constant bleeding that when it stopped occassionally was replaced by massive discharge. I finally went to another doctor who referred me to a different gynecologist who did more pap smears that also came back normal. He put me on Provera day 18 - menses to fix what he thought was a hormonal imbalance. He gave me misoprostol to reduce heavy bleeding and that helps somewhat. The Provera didn't stop the bleeding and I had a few significant bleeding episodes, where it was bright red and gushing out in pulses, cups at a time until the misoprotol kicked in. At the next office visit, he did a biopsy, about 3 weeks ago, and that came back as malgnant adenocarcinoma. I went in for a PET/CT scan last week. As I was leaving I could see that various parts of my uterus and cervix were lit up. 

He referred me to a gynecological oncologist near San Jose (I live 7 hours away) and her office set a tentative surgery schedule for April 13, 2017.  He called to check on me yesterday morning (which I have never had a Dr. do before) and I mentioned having very heavy bleeding the night before and we went over what to do if it wasn't stopped by the misoprotol. I asked about the PET/CT results. He said parts of my cervix and uterus are affected, but it doesn't seem to have spread beyond my uterus. Which, so far, seems like pretty good news. I'm so grateful and glad he did the biopsy.

My local gynecologist called back about 30 minutes later and said that he had spoken to the oncologist and arranged an appointment for me for this coming Monday. He also mentioned that rather than do surgery the oncologist is leaning toward just doing radiation. How he managed this, I'm not sure. I'm grateful, of course, but I'm a little worried about how and why I just got bumped to the front of the line.

I have a mitral valve prolapse and arrhythmia, which is usually not a big deal, except that during 2 surgeries I had, for a broken leg in the 90s, they had to resuscitate me during general anesthesia. They made me do an EKG after the last surgery, which is why I know I have the MVP and arrhytmia, and they said to never have general anesthesia again. I had 2 C-section births afterward with, I beleive, epidural on both. Feeling them rooting around and tugging on things inside you is definitely not a pleasant experience, but it's over pretty quickly for a C-section. I can't even imagine what that would be like for a hysterectomy. I'd be willing to do it if it's my best option, includng signing an unqualified release of liability waiver in the event I died as a complication of the general anesthesia.

Everything I've read suggests that surgery is the first and best choice for this sort of cancer and that seems to be the specialty of the gynecological oncologist I'm supposed to see. I am concerned that they are steering away from surgery because of my MVP and history with general anesthesia. 

Is a hysterectomy of this type something that cannot be done under an epidural/spinal?

Is using radiation only, and no surgery, a viable approach for this situation? (The nearest hospital with a radiation treatment center is about 70 miles away)

Should I try to find an oncologist willing to perform surgery?

What else should I know or consider that I haven't thought of or don't know about yet?

What questions should I be asking Monday?

Thanks for reading all this and please don't be shy about responding. I will really appreciate any input or experiences you may have to share.

Kaleena's picture
Kaleena
Posts: 1980
Joined: Nov 2009

I think I would go for a second opinion from a different doctor.   Usually a hysterectomy is the best way and I believe it is only done through anesthesia.   Where I am located, you must have a EKG prior to any surgery, unless you had an EKG within several months of your surgery.   Radiation can be ok, but just be known that once you radiate an area, it cannot be radiated again easily.  They usually say it cannot be radiated again.   

Given your previous history on anesthesia, I would suggest speaking with the doctors on all of your options.  Remember, it is what is best for you and what exactly what you want to do.   Get all the information from the doctors and then make your decision.

After you have your hysterectomy, what kind of treatment will you be on?   Or can you start chemo prior?  

I hope you can get some answers.

abrub's picture
abrub
Posts: 2130
Joined: Mar 2010

They don't like to do that, but I was so terrified of general anesthesia that my dr agreed to it. (If they can do C-sections with spinals, no reason they can't do hysterectomies.)

It's worth getting another opinion.  You want to find out how radiation will impact quality of life, and make an informed decision based on what you want as well.

I've subsequently had several surgeries with General Anesthesia without issue, but I don't have your history.  My cancer is quite different from yours (metastatic appendix cancer that was found on my ovary during said hysterectomy.)  A recent recurrence was found in vaginal tissue, and as they couldn't get all the cancerous cells, I've opted out of radiation.  For my particular cancer, they don't know if it would be effective (it hasn't been used for appendix cancer) and I was at hi risk for permanent bowel, bladder or sexual problems.  With no assurances and a very slow growing tumor type (it took 9 years to grow back) my drs and I agree that watchful waiting is right for me.  I do go to one of the world's top cancer centers, Memorial Sloan Kettering in NYC, and my dr had me meet with several types of radiation oncs before we agreed that it was not right for me.  The emphasis is not right FOR ME.  You need to be informed and work with a trusted dr to make the best decision FOR YOU.

Best wishes,

Alice

JanuaryDaybreak's picture
JanuaryDaybreak
Posts: 20
Joined: Nov 2016

Is using radiation only, and no surgery, a viable approach for this situation? (The nearest hospital with a radiation treatment center is about 70 miles away)

     From what I was told at my gyn onc office, the approach depends largely on how severe your case is.  Radiation is sometimes used instead of surgery.

Should I try to find an oncologist willing to perform surgery?

     Not before you find out why your oncology/gynecology team is considering radiation instead of surgery.  The answer may inform your decision.

What else should I know or consider that I haven't thought of or don't know about yet?

What questions should I be asking Monday?

     1.  What are the advantages of radiation over surgery in my case?

     2.  What stage is my cancer?  How is it usually treated?

     3.  What risks are involved if we use radiation instead of surgery?

     4.  How likely is my cancer to come back?

     5.  Why are you not considering surgery?

 

I wish you the best.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2715
Joined: Mar 2013

Efte, how are you doing?  What did you decide?

Efte
Posts: 2
Joined: Mar 2017

Thanks from me to each of you for your information, warm thoughts, and encouragement, Kaleena, abrub, JanuaryDaybreak, and NoTimeForCancer!

abrub, I hope that your cancer grows very, very slowly! I do appreciate the extremely individual nature of treatment options and approaches. It sounds like you have had a wonderful team working with you.

It turned out I am stage 3B endo-cervical adenocarcinoma, which, without getting too graphic, means it has spread so that surgery is no longer an option. I'll be starting weekly chemo and daily radiation for 5 weeks, followed by more chemo and 3 internal brachy radiation treatments. It seems like the standard approach. If there are alternatives to this approach, aside from doing nothing, I haven't come across them yet.

The gynecological oncologist I saw clearly knew her stuff and I have no question about the competence and experience of my radiation oncologist. He was forthright, thorough, and walked me through the full PET/CT scan. The PET/CT scan also showed increased activity around my thyroid, which was interpreted as possibly being thyroiditis and I had activated marrow, which goes a long way to explain why the long bones in my arms and legs have been aching for a few years. The rad. onc. said that because it has not spread to my lymph nodes yet it probably isn't metastasis in my bones, that it's rare in the absence of lymph involvement. I read that it may be excess cytokines causing it, along with fatigue. I feel so exhausted all the time. I get out of bed and immediately feel like I worked hard manual labor the day before and need a full night of sleep. I guess we'll find out eventually.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2715
Joined: Mar 2013

Efte, it does sound like you might have found doctors you are happy with.  I always think that is important - you are putting your life under their guidance so you should be.

I know everyone is different, but for me, I found the faitgue - especially during radiation- was incredible.  I worked throughout treatment - fortunately I had a desk job, but found I would crash out about 7 pm.  I only mention that since you said you are already experiencing fatigue.

I say rest is restorative and gave in to it.  Be sure you eat protein and maybe you can request meeting with a dietician who works with cancer treatment patients.  Sometimes that is included in insurance and sometimes not.  Mine was not and it cost me $18.  It was worth it to me but am always happy to share what was told to me. 

JanuaryDaybreak's picture
JanuaryDaybreak
Posts: 20
Joined: Nov 2016

I'm glad to know you got the answers you were hoping for.  

As NoTime mentioned, radiation affects everyone differently.  My radiation oncology nurses said that some patients don't notice any side effects until near the end of treatments, but that some notice those effects right away.  For me, fatigue set in around halfway, and the radiation oncologist started examining for skin effects around that point.  Fatigue was the most noticeable side effect, but I also have problems with tanning/sunburn on the radiation area.

Rest is important.  It's part of your recovery.  So never feel guilty about resting.  Right now, your greatest responsibility is to cooperate and communicate with your radiation oncology team.  If your team is like mine,  you'll have access to a nutritionist and a social worker, in addition to the doctor, the nurses, and the radiation therapists.  They're all there to help you through this leg of your cancer journey.  The nutritionist on my team told me to avoid eating too much fiber, and eat protein for energy.

Good luck!

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