What if I refuse surgery

Hi Cheryl, could you possibly say a bit more about your situation please and say why you are thinking of not having a hysterectomy? You say “the more I read” - what is it that you’ve been reading?

I have grade one endometrioid cancer, diagnosed 24.12.25. I had no symptoms and had visited the GP about a re-curing  urine infection. She wanted to do a smear test but I explained that this had always been a painful experience - which she realized when she attempted to try one. I was sent for a transvaginal ultrasound which revealed a thickened womb lining. A hysteroscopy followed in which a polyp was removed in which was found the grade 1 cancer. At the same time a coil was fitted to try to oppose the excess oestrogen causing the thickened lining. I also embarked on a healthy eating and exercise plan (and have lost over 24lbs since diagnosis). I was offered a complete hysterectomy with additional removal of ovaries and tubes but opted to continue with the coil and healthy eating in order to manage the cancer and slow any potential growth. I have since had a further hysteroscopy and D&C which showed some beneficial effect from the coil but also that all the cancer was not removed with the initial polyp removal.

I have another hysteroscopy in June just to check to see how the coil is doing.

I feel really well, fit and healthy with no symptoms and I have read so many lived experiences of women who have had the operation and have been left with chronic pain or urinary/bowel problems and I really don't want to risk that. I've decided that trying to slow any progress would be the best option for me. I'm 67 and have had a full life and have no desire to beat any longevity records - quality of life is more important to me.

Neither do I want to take the risk of my voice or teeth (I have a couple of dodgy crowns)being damaged during intubation and they will not perform a laparoscopic under spinal block - which is what I have for the hysteroscopy.

Then there is the risk of them finding out that it is worse than they thought and I have no intention of undergoing chemo or radio therapy. I don't want to spend the rest of my days going back and forth for invasive, draining treatments. I'd rather not know.

Obviously I can't expect the NHS to keep giving me a hysteroscopy every few months, and I wouldn't want them to but wondered if they would continue some sort of monitoring  eg blood tests or yearly scans or if they would just discharge me because of my refusal to accept their "gold standard" treatment.

Thanks for replying and for any info you can give regarding monitoring.

Hi Cheryl

Welcome to the group.

I am sorry to hear that you have had a diagnosis of endometrial cancer and I understand that the treatment can feel scary to go through.

You mention that your cancer is a grade 1 and that is positive as it is the lowest grade. Have you had a CT/MRI to say what stage the cancer is? This is important in influencing treatment. If your cancer is of an early stage and grade there is every chance that the treatment would be curative. 

For some ladies with very low stage and grade cancer the hormone coil may be used as a treatment. This can be for circumstances such as fertility, where surgery is not an option for medical reasons etc. It sounds like the coil has had some positive effects but that there is still cancer present. It is normal to have repeat hysteroscopies to see how it is working. 

The normal first line treatment that is advised is a hysterectomy. This will hopefully remove any cancer that is left. Mine was in 2022 and was done via keyhole and I recovered quickly. There was little pain and I was in hospital for one night only. 

No one wants to have surgery that is not necessary and for me it was my first big surgery however endometrial cancer is a very treatable cancer and I felt relieved to have the cancer removed. You say that you are fit and healthy and that is great as it means that if you did have surgery, it would help with the recovery. Well done on the weight loss too- not an easy thing. I understand about quality of life but you are still young- many ladies on here of your age and older have had successful treatment. 

My surgery did not leave me with any long term pain or other issues. I do not have any dental issues following being intubated. In my time on here I have not heard of anyone's teeth being damaged during surgery. 

I understand that it can be scary to face surgery and that you are worried in case the cancer is worse than is thought. I can also understand that the thought of radiotherapy and chemotherapy is frightening. I felt the same, but I had both.  However the treatment was still preferable to the alternative. If you did have surgery- and it is your choice- and if it did show that you needed further treatment- then that too would be your choice. However this surgery has the potential to save your life and give you many more years ahead. 

If you decide not to follow the advice of your oncologist then you would likely stay under oncology and have further monitoring. I do not know whether this would be repeat hysteroscopies or whether it would involve scans. 

You mention a repeat check in June and I would perhaps have a think about any questions you may have before then so that you can bring them up. It is ultimately your choice whether to accept the recommended treatment or to decide on alternative or no treatment, however I would urge you to get all the information and to talk it through with your oncologist to make sure that it is an informed decision and that you are clear on all the facts. I know it can feel scary to face treatment after a diagnosis and we are here to support you in any way we can.

If it would help to talk things through, why not give the Support Line a call. 

Hope this helps a bit.

Jane

Thank you for your reply. I really appreciate it but I am not young. I'm an OAP, even if the govt did make me wait 6 years for my pension!  My own mother was dead by the age of 68 and I've never had any illusion or desire for a long life - just a pain free, quality one .

I was told that the cancer can't be graded until after surgery although the scans (CT and MRI) seemed to confirm the initial diagnosis of grade 1 endometrioid cancer. Low grade and slow growing. My thought is that if I can control the growth with coil and diet it will not cause me any problems for the rest of my days. 

It's good to know that if symptoms ever actually appear that bother me I will still have access to oncology.

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Hi Cheryl, thanks for your reply. I have to say I’m about the same age as you (67 this year) and I certainly don’t consider myself old! I had my laparoscopic hysterectomy 4 years ago, and had no damage to my teeth (including crowns), have no urinary or bowel problems, and didn’t need pain relief from the morning after my op, but took paracetamol at night for a couple of days just in case. I wonder if you’ve been googling and scaring yourself with extreme stories, which hasn’t been my experience at all. I hear what you’re saying in your post, but even grade 1 can turn up elsewhere in the body if untreated. When I was diagnosed, my team did a chest X ray as well as MRI as they said lungs are a common place for it to turn up too. And even if it “just” stays in the uterus, it came become painful too, especially if it spreads to the ovaries. For me, having a hysterectomy literally saved my life. 

Hi Cheryl, it sounds as if the coil  has had some effect but that the cancer is still present. If you opt out of having surgery, there is nothing to suggest that the hospital would simply discharge you without further care.

 In my case, I opted-out of having surgery for grade 1 stage 1 EC, due to having complex medical conditions that would have made surgery risky for me. My team agreed and thankfully have been very supportive of my decision and continued monitoring me with the coil. I too am in my 60's.

Fortunately, in my case - after a full year of having the coil, the results of the MRI and biopsy came back totally clear of any sign of cancer. I was very relieved and my consultant has now agreed that if the next biopsy returns clear/normal, I will go onto annual monitoring. My consultant has also agreed to consider my having the coil removed at some point in the future, once I have lost more weight and my diabetes is in remission. 

Generally though, most women do have surgery - even after treatment with the coil - but everyone is an individual and there are times when surgery is not suitable for everyone. I suggest talking your options through with your team and even your GP about your future options. It all depends really on the results of your current treatment. Many women have suggess with the coil, insomuch they can try for a baby or for older women, continue with the coil or alternative treatment such as radiotherapy etc...

It's your body and your choice at the end of the day and it sounds as though you are making positive changes - but there has to be a balance. It's not always just about the surgery but ongoing quality of life. In my case, my consultant agreed that even I got through the surgery OK, there might be complications, due to my complex medical history ongoing. It's not always an easy decision - but the starting point is to work with your team and consultant, as they have your case history and best interests at heart. Many women here have had positive experiences with surgery and got through it all very well, which is encouraging. In my case however, I felt that less would be more and opted-out of surgery to continue with the coil - but only on the basis that my test results were completely clear of disease.