• Has anyone ever been through a similar experience?

    Asked by caralyn on Monday, June 10, 2019

    Has anyone ever been through a similar experience?

    I was told by my surgeon at my post op visit that I only had a 10% chance of the cancer coming back if I did nothing further. The percentage dropped to 2% if I had 5 treatments of brachytherapy. I said I would think about it and let the office know if I wanted the brachytherapy. I got on every website possible which was not a good thing because I did not know there was a difference between high dose therapy and was reading women's experiences who had to spend time in the hospital. my husband agreed with me that the odds were so low it would not be a problem. Noone at the surgeon's office told me my choice was risky. I didn't see my surgeon at the 3 month checkup nor the 6 month checkup. I saw a NP the first check and another woman at the 6 month check. I told them what I had decided and neither one said anything to me - just listened. Now cancer is back and I am doing 25 external radiation and 5 brachytherapy. My surgical report 0f 6/29/18 says "at least a stage 2"

    2 Answers from the Community

    • carm's Avatar
      carm

      Hello, I am an oncology nurse and I specialize in gynecological cancers. It is always suggested to have the brachytherapy according to the NCCN guidelines. There are some cancers where the watchful wait can be beneficial but, this is not one of them. However, most oncologists feel that a patient should be given that choice but should explain the risks and benefits of the treatment. And most of all, you should always get a second opinion. Best of luck to you.

      3 months ago
    • Ivy's Avatar
      Ivy

      I had IIIC emdometrial cancer, and three sessions of high dose brachytherapy were prescribed. I went ahead with it because my odds were much higher for recurrence. I also had chemotherapy after original surgery. The original cancer, the surgery, the chemo, the bracytherapy--all made for a pretty bad year. It has now been 7 years without cancer, except for unrelated skin cancers. So it was definitely worth it after all.

      The info above from Carm is excellent. A second opinion could be a great help--it might reinforce what is already planned, or it might provide alternate avenues. A map of the special cancer hospitals across the country can be found at https://www.nccn.org/members/network. If you don't live close enough to have treatments at one of these locations, you could make the second opinion there and then have all the treatments administered at a closer location. It usually isn't necessary to stay at a distant hospital for a long period as local treatments can be prescribed in most cases.

      There are several things that I suggest:
      1. Insist that you want to speak with the actual specialist doctor instead of all the others, such as NP or other trained helpers in the doctor's office. Let them know ahead of time that you want detailed information about everything that might affect your treatment and recovery. Make a list of your questions ahead of time, and take someone else with you to listen and ask questions, too. I have a lot of sympathy for the doctors and their staff, but this is your life, and you deserve lots of attention and lots of detail. I'm surprised anyone quoted a specific, small percentage for recurrence, because lots of doctors go to great lengths to avoid doing this. There is info online about survival statistics, but be forewarned that even doctors can't guarantee which part of the statistic you'll land in--the good side, or the bad side. That said, we always need to hope for the best while doing everything we can to avoid the worst.
      2. When I was treated in 2012, only 3 sessions of high dose brachytherapy were prescribed as post-surgical adjuvant (preventive) therapy. One question to ask may be whether 5 sessions is the standard now or whether your case in particular needs 5 instead of 3. I would err on the side of treatment, but is there now any proof or recognized guideline for numbers of treatments, as well as having both external and bracytherapy radiation? Also, has the radiation dosage prescription changed? Are 3 treatments for those without a recurrence so far and 5 treatments for those with recurrence?
      3. You might ask your doctor for sources so you can read about this issue for yourself. Most of the places on the web where you might get such information are pretty technical, but perhaps more information is out there for the rest of us.

      What I'm really trying to say here is that doctors are very busy, and they are pretty much required to fit in a high number of patients per day. However, your surgeon is your main cancer doctor, and he/she, I think, should see you for every followup visit. The others, the radiation oncologist, the medical oncologist (if you ever need one), the NP--all are a circle of care around the surgeon. You deserve a lot of attention, but sometimes you have to make sure you get it. The more questions you ask, and the more you know about the cancer, details about the recurrence, location of the recurrence, details about how the proposed radiation will affect the cancer as well as how the treatment will affect the rest of you--both physically and psychologically, and exactly what to expect during actual brachytherapy treatment, the better informed your treatment choices will be.

      If that makes you a bit anxious, prepare your questions and have an appointment friend go with you with a list, to ask questions, and to make note of all the answers. My helper was my husband, and he was not the best at asking questions or putting everything together at the appointments and meetings with doctors. He was a bit intimidated. Your helper should be whoever is most likely to follow detail in the conversations and who won't hesitate to question. However, my husband was absolutely terrific in helping me through the treatments, managing effects of treatments, and all those associated issues. You need both types of assistance, so you may need to assign different advocates for various roles.

      On a related issue, my treatment center required standard scans every 3 months for the first year after treatment, scans every 6 months for the second year, and annual scans for years 3-6. This schedule increased if any of the scans showed questionable results. Your question didn't mention whether you've been getting scans. This is another important area to discuss with your doctor. Recurrences are scary, so it's important to catch them immediately. Again, you need this discussion with your doctor in person.

      I suspect you'll weather this setback better than you expect, and I sincerely hope your results are even more positive than mine have been. Do let everyone know how it all goes for you. We'll all be sending positive thoughts for you.

      3 months ago

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