Recurrence in pelvic lymph nodes (radiation treatment)

edited March 21 in Treatment
I was diagnosis sept/17 with stage 3 high grade serous carcinoma. I underwent a radical hysterectomy 9 days after my diagnosis (HUGE tumour). I lost most of my abdominal wall to the tumour. They put me back together with mesh, which developed a life threatening infection and I underwent a second major surgery in Nov/17. I began carbo/taxol in Dec/17. 7 rounds. I finished in May/18 and my CA125 immediately began climbing. Aug/18 I underwent a CT and it was discovered that it was back in my pelvic lymph nodes. Stage 4. I am about to begin 30 treatments of radiation. I am married with 4 teenagers. This is HARD. Has anyone else had a similar experience? Chemo made me desperately ill. I am wondering what I should expect from radiation. The Rad Onc tells me I should only experience diarrhea and fatigue, but I’d love to hear from my sisters...

Comments

  • Hello @mother42275- so sorry to hear what you are going through.
    Yes, please connect with your DR team to get a handle on how to prepare for the side effects so you can try to be as comfortable as possible. Hoping those who have experienced radiation can offer you some tips.
    Welcome to the chat site and we hope you will view the other topics and find much support here.
  • Hi @mother42275.  Have you received a By Your Side book? This is a guide that Ovarian Cancer Canada publishes and it has an extensive section on dealing with potential side effects of treatment.  As always, side effects can be different for each person with greater or lesser intensity.   I am also tagging a few women who have had radiation treatment -   hi @Anicel, @ErinB, @Elsie13 and @cdot! Are you able to share some tips and advice for @mother42275

    Here is the link to order By Your Side and/or Still By Your Side, which is geared for women dealing with a recurrence.
    https://ovariancanada.org/living-with-ovarian-cancer/support-resources

    Your health care team should also be able to provide a handout or information about radiation and what to expect.    If not, you could ask your nurse or the patient library at your cancer center.  Did you receive anything in writing?

       
  • Hi @mother42275 - yes, I also went through radiation. My suggestion would be to speak to your pharmacist or nurse about a soothing cream for your... err.... backside. The pain was intense from diarrhea (sorry, this might be TMI) so I would try and combat that by using the cream after each bathroom trip to try and prevent the burning. That would be my tip to myself if I could go back in time. If you want, I can find the name of the cream I used? Good luck to you, I'll be thinking of you. xxxx 
  • In my case, @mother42275, I had stage 2 ovarian cancer and was extremely tired after chemo treatments, especially around day 5 and 6. So when I had radiation, I wasn't really tired, just having to go to the hospital 5 days a week was a bit  depressing.  However, you see some of the same patients, and they're walking in and out of the hospital as if they've just been for a dental hygene visit. It's very normal, after a couple of days, and you generally get the same technicians, and they become your friends. After around 10 radiation sessions, I developed diarrhea, but the technicians know this is quite likely, so they scheduled two sessions with the dietitian for me.  The diet really helped. 
       Anyway, it seems to me that a few months after the radiation was all finished, I had a bit of food poisoning or something, which caused diarrhea, so I had that burning that @ErinB mentioned, so I used Penaten Daily Clear Protection, which they sell in the baby products section of the pharmacy. 
  • Thank you so much Erin B, I REALLY appreciate the tip! If you are able to get me the name of that cream, it would be very helpful! You girls are the best!!
  • Thanks for tagging me Marilyn. Yes, I had 25 rounds of radiation. I started having diarrhea almost right away. I started radiation about a month after chemo. I don’t have kids so I can’t speak to caring for anyone but myself during rad. I have a very supportive partner that does most of the cooking and we hired cleaners while I was sick. 

    I found that eating a bland diet was helpful but didn’t eliminate diarrhea. Leafy greens, fried foods, and dairy will not be your friends. I would also use unscented baby wipes instead of toilet paper when I felt very sore. The cream sounds like it would be helpful but I didn’t use it. I drove myself to and from radiation so fatigue wasn’t so bad that I couldn’t do that.

    I did find morning appointments better for me and I would go into the rad appt without eating. I’m not sure why but if I ate before rad I would feel more nauseated. 

    I became sensitive to eggs and even more lactose intolerant after treatment ended. Still have those sensitivities. I also still have fatigue 2 years later but it was most intense about 2-4 weeks after treatment ended. I was not expecting that! 

    I wouldn’t say it’s worse or easier than chemo, just different. Please feel free to tag me if you have any questions now or during your radiation treatment . 💓 
  • @mother42275 see above :) 
  • Hi @mother42275.  Just an FYI...... if you use the "@symbol before the person's name they will receive notification that they have been tagged in a discussion.

    You are getting great feedback - hope it helps!  Thank you to @ErinB @Elsie13 ; and @cdot for sharing your thoughts and tips in dealing with radiation.... :) 
  • That's so funny @cdot - I now have the dairy thing too. I never did before and now I can't tolerate it at all! 
  • @Marilyn...THAT’S what I was doing wrong! LOL Thank you so much!! 👍🏻
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