Adjuvant brachytherapy or observation only?

Hi Everyone, 

I've been lurking and reading for a while but haven't posted yet. However, I'm now having to make a decision that I'm finding tough and I'd really value some help.

Long story short:
Age 48
Diagnosed with Stage 1a, grade 3, endometrioid endometrial carcinoma.
I'm just over 6 weeks post surgery.

I saw the oncologists (another hospital, another 2 Drs!) on Thursday and she said it was my choice as to whether I had brachytherapy or not.

The statistics seemed to change between the two doctors I saw and the consultant said I was borderline as to whether I was offered further treatment or not.

The consultant said that grade 3 was my only risk factor and because she knew I would be diligent about follow up appts etc, I got the impression she was fairly unconcerned and she certainly wasn't pushing for me to have the treatment.

So my question to all you lovely peeps is did anyone else go down the observation only (i.e. no brachytherapy) route and if so what were your reasons?

  • Hello Blueskies and welcome to the group.  

    My cancer was also stage 1a but grade 3 serous. Cancer was all removed but ? of possible LSVI? So I was recommended 3 sessions of brachytherapy but given an option whether to also have chemotherapy.  After reading some helpful posts on this group and also my own research I decided to have everything thrown at it because Grade 3 is high risk for recurrence. In my personal opinion I would rather live with the after effects (and no recurrence) than wish I'd done everything regrettably. 

    Hope this helps in some way but I'm sure some other helpful ladies will be along soon and have some input to help you decide. 

    Xx

    Mad 
  • Hello Bluskies, welcome to the forum! I hope you are recovering well from your op.

    What you’re asking is a very tricky one. After I had my op and histology results in 2020 - I was Grade 1 Stage 1b - I was very disappointed when my surgeon recommended three sessions of brachytherapy. He said it was a belt and braces approach that should reduce the chances of recurrence from 15% down to about 7%. With these odds he said some women choose to have no further treatment.

    I spent a couple of weeks in turmoil, wrestling with what to do. Apart from the womb cancer I was a fit and healthy person. I’d read the warnings about side effects and agonised over if it was worth making myself possibly worse off for a small gain. Eventually I had a chat with the oncologist who reassured me that brachy is a very targeted treatment and you have to be very unlucky to get side effects. In the end I decided I would do anything to get rid of this horrid disease so agreed to have the treatment. Honestly, once I’d made the decision I felt a huge weight lift off my shoulders.

    I didn’t get any side effects, but do use the Dreaded Dilators ( see the other thread! Actually they are the worst thing about the treatment! ). It’s very difficult when the medics leave you with the decision, as generally we are guided by their expertise. I don’t know if this is of any help to you! Our circumstances are slightly different as I was a higher stage than you are and also  I was 69 then, whist you are still a youngster! Good luck with whatever you decide to do.

    Viv x

  • Hi BlueSkies, I’m due to have brachy this coming Tuesday and then the following Tuesday. I’m honestly less concerned about it side effects wise than from the external radiotherapy I’ve had. If you have any questions about my experience of brachytherapy I’d be happy to help.

  • Hi Blueskies.  I have just finished my 3 sessions of brachytherapy and found it far less of a problem than I had expected.  It is certainly undignified, but the nurses are so kind and reassuring and they put you at ease completely.  I have had some side effects - some cystitis type problems, a couple of bouts of diarrhoea and a bit of a dull ache, but nothing unbearable and the nurses were very confident that any side effects, if they happened, would be just for a couple of weeks.

    I had my hysterectomy in November and was stage 1a, grade 3 after the operation, with no lymph node or LVSI involved.   My oncologist also gave me the Option of chemotherapy and brachytherapy, but gave me the impression that she would be quite happy if I chose not to have it.  I agree that making that decision is really difficult - we are just not qualified!  Fortunately my consultant who had actually carried out my hysterectomy was much more forthright when he phoned me with the results of the histology - he wanted me to have both the chemo and brachytherapy as my tumour had been a particularly aggressive type.  He told me not to worry at all about the brachytherapy as it was nothing to worry about!   Not sure I would completely agree with him - but I am glad I have had it.   If you look on the radiotherapy thread, there are more details of what happens with brachytherapy which might help. Good luck with your decision 

  • Hi Mad, 

    Thank you for replying. 

    I totally get your decision to have chemo given the type of cancer you had. Serous hasn't been mentioned in my case so chemo isn't even on the table for me. 

    I'm struggling to find much about my stage and grade of cancer online and having now seen 6 or 7 different doctors I really don't know who to turn to for advice. I really don't feel qualified to make this decision!

    At the moment, for me, the cons outweigh pros but that's based on the 5% risk reduction I was quoted by one of the oncologists last week and not on any concrete evidence. I can't find much evidence for that statistic on google scholar.

    The oncologists kept saying that the cancer has gone, you don't have it any more, so I can't really understand why I need any further treatment but up until the oncologist appt last week, all the Drs had said you'll have brachytherapy 6-8 weeks post op, no question. 

    So to now be handed the choice is very unnerving! 

    Arghh!! 

  • Hi Jigsaw, 

    Thank you for your reply.

    The oncologist did mention my age as a risk reduction factor. Plus the thought of having to use the pesky dilators twice a week for the rest of my life was a bit depressing. For the first time in a very long time I'm not bleeding and I don't have to worry about contraception - gotta take the positives where you can ;) 

    I'm actually not overly bothered about the procedure itself, it's more the ongoing issues that are affecting my thinking.

    The oncologist also said that if I have brachytherapy now, it should reduce the chance of recurrence locally from 10% (this number changed between doctors!) to 5 %, but it would limit my options if a recurrence did occur in the future. Feel a bit dammed if I do, dammed if I don't!  

  • Hi Marmite fan - I love marmite too! 

    Good luck with the brachytherapy, hope everything goes smoothly.

    Thank you for your offer, I'll definitely come back to you if I decide to go through with it.

  • Morning Blueskies. It’s interesting the different attitudes/information the docs give us! My oncologist said that having brachy wouldn’t affect any further treatment if it was needed, ie chemo or radiotherapy. He said that if future radiotherapy should ever be needed it was often a lower dose.. I think he said you can only have external radiotherapy once, brachy is not counted in that factor so you can still have external radiotherapy.

    Also, if you read the dilators thread you can see we have all been told  to use them for different lengths of time. And if you still are sexually active you may not need to use them at all! Hope that doesn’t add to your confusion, I remember when I was weighing up the decision I got myself so wound up I had my first ever panic attack!! Take care,

    Viv

  • Hi again BlueSkies, just to say that my brachytherapy nurse and my patient information leaflet have told me that:

    - sex or using a vibrator does the same as the dilators, ie so is an alternative, ie the provided utensils don’t need to be used if the others are 

    - dilation of any sort should only need to be done for about a year 

    Could I suggest perhaps that you ask your CNS if a brachytherapy nurse could phone you or see you to chat about it? I’d say it may be better to talk to them as they do it every day and are also often a bit nerdy about it re info and also can have a more helpful manner when talking about it. A brachy nurse phoned me pre my decision and was brilliant about it, and again after my decision. 

  • Hi  and welcome to the group. I was stage 1b/grade 3 serous and was offered 3 x sessions of adjuvant Brachytherapy as a Belt and Braces to prevent recurrence. I had regular quarterly check-ups with internal digital and camera examinations.

    About 8 months after my brachytherapy I noticed I was having shortness of breath and abdominal discomfort. I mentioned this to my gynae team but they said it sounded more Thoracic and suggested I speak to my GP. I did, had an X-ray, all clear, ECG, all normal and a CT scan.

    The CT scan showed my cancer had metastasised with lesions on Spleen and liver and masses in my peritoneum, pelvis,omentum and top of vaginal cuff. I've just completed 6 cycles of chemo. Had a scan after cycle 3 showed cancer had regresses to 50%. Will have a CT scan on 24th May and meet my Oncologist on 31st May.

    To be honest I feel well, except for peripheral neuropathy in hands and feet so I think the chemo had worked. But I know I will have to have treatment, probably at Christmas as I've been told it will come back as I'm now classed as stage 4 incurable.

    I don't want to depress you, that's not my intention but please have another chat with your Oncologist as Grade 3 serous has a high risk of spreading. My stage was 1B which means confined to the womb but spread more than 50% into the muscle. My Oncologist said due to the sizes of my masses it was unlikely to have followed the hysterectomy but already been present. I was gutted as no-one in my biological family has ever had cancer.

    I'm attaching a link from Cancer Research UK womb cancer/types grades which you might find useful, just click on the link.

    If you've any more questions, fell free to come back and ask.

    Big hugs, Barb xx


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