Radiotherapy and biopsies

This sounds complex, so I am not in a position to advise overall. I can say that I have a mirena coil but am not in the same position as you at all. I have biopsies on a regular basis, even with the coil in place - and it has not been an issue. However, in your case there are other considerations, so it needs expert handling to answer your queries. What about talking to your medical team OR your GP about your concerns? Failing that, Macmillan have a web chat that might help you work through your issues. The fact that you are not a good candidate for surgery now doesn't necessarily mean you can't have it at a later date, so hang in there. Get the information and work from that point. 

I have had the coil in for 18 months now and was given the all-clear a few months ago, so maybe the coil will work for you too. There must have been a good reason they fitted the coil and maybe it's only a holding mechanism until you are fit enough for surgery...

Thanks for the input.  I have written to the gynaecologist for some clarification and the fact that I am unsure if the coil is the best way to go in the long term. It looks like my letter and the latest mdt letter have missed each other. But if they are requesting biopsies that regular I am sure I can get answers to my questions either way.  Just not liking the 3 monthly biopsies now that my cervix and uterus have become sensitive since radiotherapy. 

But as you say I am a little complicated and need to be patient with my gynaecologist and give him time to digest and reply to my queries. 

Think you have done the right thing writing to your gynaecologist on this. Hope you get some thorough answers back.

Hi Tick

I am sorry to hear that you have had to deal with rectal cancer and also endometrial cancer. It does sound like your circumstances are quite complicated medically and that is affecting treatment choices. 

The best person to talk to is your consultant who has all your medical details. 

Whilst a hysterectomy is the normal first line treatment for endometrial cancer there can be circumstances where it is not suitable due to other medical issues. One treatment that may be used is the mirena coil. 

I can understand your concerns and realise it can be tough to deal with more treatment. I can understand why you would prefer to have the hysterectomy. Having gone through chemo and radiotherapy myself, I know it is not an easy thing to do. 

I would consider writing a list of potential questions for your consultant and to go through them one by one. You could also give the Macmillan support line a call and talk to one of the nurses who may be able to help.

The sort of questions I would consider asking (you may have different ones)............

1) If the treatment needs to be hormonal- does it have to be the coil or could I use oral progesterone instead. What would be the risks vs benefits. 

2) Would I be able to have surgery in the future and in what circumstances. Would the surgery be open surgery or would it be key hole. If I had the surgery what would my recovery look like.  Would reducing my BMI help and would I get support to do this. 

3) Would the chemo and radiotherapy treatments for my rectal cancer have had any effects on my endometrial cancer. Would a CT/MRI be a good idea. 

4) If the endometrial biopsies show that the cancer is not being helped by the mirena, what would be my options. 

These are only ideas but may give a starting point. 

Jane

Thanks for your reply.  I have written to my gynaecologist to ask some of those questions. 

I have previously taken oral progesterone but side effects where horrible including screaming at my husband at any opportunity and a feeling that stabbing him might just make my life a little better. Poor man, he has had such a lot to put up with.

Every visit I have had to gynaecology so far has resulted in people who poo poo my questions and say oh that's not an issue l, or don't worry about that for now.  So I am now in future writing my questions and sending them so I have a record.

I just want the question of whether my already inserted Mirena coil should stay in considering my uterus, cervix and vagina have been in the radiation field.  All are showing signs of atrophy which could mean a very painful removal of the coil if left in too long.  Also due to radiation other organs can also stick to other organs making any abdominal surgery very complex in the future. 

All these questions and more are constantly going round in my head.  I also cannot find any info on radiation and Mirena coil being used other than in terminal cases. I'm not terminal, the cancers aren't even metastatic. 

Sorry about the rant but no one is explaining anything to me, which just increases my anxiety and anger.

Can understand your anxiety and frustration. I know it’s not the same thing, but potentially being close to same thing. When I had my 3 months end of treatment CT scan, there was something that showed up in colon, they thought caused by radiotherapy, and wanted me to have sigmoidoscopy, which I had. The guy doing the sigmoidoscopy stopped the procedure quite quickly as he said he was concerned about continuing as I had fixed loops caused by the radio. He also said if I needed a colonoscopy in future I couldn’t and it would have to be done via a scan.

why am I saying this, because you are so right in terms of what the radio can do to your insides, and knowing the impact on my colon I think you are right to raise your questions. I also think Jane’s suggestion re CT scan or MRI is a really good suggestion.

I think it’s really good to get your answers down in writing, and really hope you have some answers soon.

Thanks for your reply.

It's just so frustrating as I thought it was supposed to be an MDT.  I am infact having pelvic MRI every 4 months for the next 2 years due to my rectal cancer, so surly those scans can be used by gynaecology to monitor my uterus. Like I say so many questions that need to be answered. I mean how cruel are they, making me have biopsies every 3 months after having radiotherapy in that area. Either they are concerned there maybe cancer still there in which case give me a hysterectomy, or they think there is none there now and just want to prove it.