Radiation: I had a hysterectomy in June removing... - My Ovacome

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Radiation

NYClady profile image
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I had a hysterectomy in June removing 20cm tumor Grade 3 and other organs. This has been followed by chemotherapy, and I today finished 4th cycle out of 6 of carboplatin / taxol. CA-25 has gradually dropped to 18 from high in the 400s. Intermittent scans were vague saying images could be cancer or could be abrasion from the surgery. Doctor says this chemo cycle will be followed by consultation with radiation people. I have been following posts on this website for some time, and I often read here of similar conditions mostly in UK, but I rarely see anything here about radiation. My primary care doctor who is not involved with the hospital and doctors doing the chemo knows my situation and discourages the radiation saying it does a lot of damage. I am trying to research, but it is technical and confusing. When I ask the oncologist, she just says we'll meet with the radiation people. Part of me thinks I should listen to their recommendations. Another part of me thinks it's a hard sell for expensive services with them knowing I have good insurance. I would like thoughts on radiation following the chemo. Thank you

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NYClady
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14 Replies
OvacomeSupport profile image
OvacomeSupportPartnerMy Ovacome Team

Hi there NYClady

Thank you for your post. I’m sorry you’ve not had any responses to your query yet and do hope some of our forum members may be able share their experiences on this topic with you soon.

In the meantime, Cancer Research UK have some information on this which I hope may be helpful for you: cancerresearchuk.org/about-... . It’s explained here that it’s rare for radiotherapy to be used to treat ovarian cancer, with the main treatments being surgery and chemotherapy.

The Dana Farber Cancer Institute also have some information on the role of radiotherapy in the treatment of ovarian cancer, which I hope will be of interest: dana-farber.org/ovarian-can... . This resource explains that while most ovarian cancer patients are not treated with radiation therapy, it may be used for patients with certain types of ovarian cancer, those who have isolated recurrence, or to control symptoms such as pain.

If you would like to speak to a member of our support team, please don’t hesitate to get in touch. Our support line number is +44 800 008 7054 and we’re here Monday – Friday, 10am – 5pm U.K time. I note you are based in the United States; we would be happy to schedule a WhatsApp/Zoom/Skype call, if this may work better for you.

Best wishes

Annie

Ovacome Support

Harleeboo profile image
Harleeboo

Hi My daughter had daily radiotherapy after chemo and debulking surgery

I don’t think it’s always recommended but she has 56 sessions over several weeks ,it did play her up with hip pain and a leg issue .We are now weeks away from her 5 years ! So fingered crossed as she is doing well 🥰

Harleeboo profile image
Harleeboo

I remember we asked people’s opinion and were advised go for it

Clearcell-lady profile image
Clearcell-lady

Hi NYClady,

5years ago, I was diagnosed with Grade 3 clear cell uterine adenocarcinoma. Had the full works....total hysterectomy, six sessions of chemo, exactly like yours, followed by 25 sessions of radiation to the pelvic area.

It was not exactly easy, but it seemed to do the trick! Thankfully, I have had no additional recurrences to date and lead a completely normal life.

I would go for it ...aches ,pains and body fatigue will be worth it if the treatment manages to bring about remission. Good luck and hope things go smoothly.

Regards,

Clearcell lady

NYClady profile image
NYClady in reply to Clearcell-lady

That’s encouraging. Was it the internal or external radiation to the pelvic area? The internal sounds kind of frightening from what I’ve read.

Clearcell-lady profile image
Clearcell-lady in reply to Clearcell-lady

It was external radiation and totally painless. It was carried out 5 times a week for 5weeks....it only lasts a few minutes per session

Rai_Nakoa profile image
Rai_Nakoa

Some of your options being offered are likely specific to your diagnosis and surgery. I had thyroid cancer in 2001 that spread to my lymph nodes in my neck, they did surgery and radiation therapy (no chemo at all) and I have never looked back since then. At the time, they said I would only have a 13% survival rate of 5 years…so I have blown that statistic out of the water😉. I remember them saying that was the best option available to me based on I had 8 out of 13 lymph nodes that tested positive, and that was not expected.

I’m not gonna falsify that I felt exhausted everyday, and it took about a year before I felt my energy and stamina coming back. That being said, I was a single mom with 3 boys ages 1,4, and 5 and was driving myself in daily for almost 3 months. (I lived in a small town that made commuting a 3 hr round trip each day) ….so not sure if 3 hrs a day in a vehicle 3 car seats deep would have had an impact😂.

Either way, try to write down as many questions as you can think of, and weigh out the pros and cons so you are comfortable with whatever decision you decide to make. 😊

Summergold2 profile image
Summergold2 in reply to Rai_Nakoa

Oh my you are a tough Tigger!!!!!! Good for you!

K95m profile image
K95m

Hi there

I was asked by Ovaco e to respond to your query. I think there might be a bit of confusion, I had Taxol but never had Radiation. I hope you get some answers to your concerns and the best of luck.

NYClady profile image
NYClady

Thanks all of you. Your experiences put a lot into perspective.

14523ok profile image
14523ok

I had neoadjuvant chemo and monoclonal antibody treatment. 6 cycles carbo/taxol/herceptin. Then supracervical hysterectomy. Oopherectomy (bilateral) and omenectomy.

Cervix was left in because there were no clear margins to get it out both bladder and bowel had fibrous lesions so they left it in

Now, I just had biopsy of the cervix and tumor cells were present. Tumor mass at about 3cm friable lesion. We now will go for radiation to kill the bugger.

No evidence of any other tumor but will see if this does the trick.

Targeted radiation to the pelvis begins in October after the 1st.

I'm ok otherwise feeling well.

See my medical oncologist tomorrow.

Hopeful they will get it all with the radiation.

I am 16 weeks post op so this is residual tumor they say. Not recurrent.

Wish me luck 😇

NYClady profile image
NYClady

Good luck and all the best to you.

Cher96 profile image
Cher96

Hi NYCladyI'd like to know what you and your team of docs have decided about the radiation. I'm assuming they have suggested it as a treatment because of the nature of your particular cancer. That was a large tumor. My type of OC was "carcinamotosis" which are small tumors scattered throughout the peritoneum so it would be difficult to target for radiation. My treatment has been in NYC and I hope that they wouldn't recommend unnecessary treatment because of health insurance, although Cancer is a big business so it's easy to feel skeptical. Good luck with whatever you decide.

Cher 96 (Joan)

NYClady profile image
NYClady

I meet with the radiation people on December 17 for a consultation, so I will report back . It’s always a concern that they will try to advise procedures because of the insurance, but I am thankful that everything has been paid for, and I had no out of pocket costs so far other that a few $20 doctor copays and a few cheap prescription drugs.

I am not enthusiastic about having to take more weeks off work and having to travel back and forth into Manhattan daily during that time.

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