Consultation to discuss further treatment management

Hi Letap

I understand that you would like to pursue fertility sparing treatment if at all possible. 

It sounds like because you have been on the hormonal treatment for a while (provera around 8 months and mirena for 6 months) that the consultant would like to talk to you about the ongoing management and to see if the treatment has had any effect on the cancer.

It may be that they would like to examine you or to talk to you about a further biopsy to see if the provera is doing what it should be. It may be that they would want to check the position and effectiveness of the mirena coil. 

To me further management would be to talk to you about what you want, to discuss how the medication is working or not working for you and to check whether the cancer has been treated by the hormones or whether a different treatment is needed. It could mean a change is dose perhaps. Further management could be that you stay on the current treatment and get repeat hysteroscopies/biopsies. There is also the possibility of you being offered a scan- again to see if the treatment has had an effect on the cancer. 

As far as I am aware only stage 1a and grade 1 cancer can be treated in this way to help preserve fertility. But this would normally be reviewed regularly.  It is not a standard treatment and not necessarily suitable for everyone. Normally for most ladies - where it is medically possible -a hysterectomy is offered. 

If the cancer has been effectively treated it may well be to discuss your future plans with regards to your fertility. 

Good Luck

Jane

Hi, I have a Mirena coil so understand what you are going through. Whilst sometimes the coil can be fitted well - at other times, it has to be re-fitted again and possibly have an ultrasound to ensure it's in the right place. Until you ensure it's fitted correctly, you won't know if it's working, so it would be a shame to abandon the hormone treatment until you are sure you've explored all avenues.

Yes, the 'gold standard' remains hysterectomy but it's not suitable for everyone and you've already expressed a wish to try for children. Actually 'further management' doesn't sound that bad, because my Consultant always uses the phrase 'medical or further management' to mean ongoing hormone treatment, rather than surgery for me.

So I would first make a list of questions before your appointment - and ask directly what they mean by further management, to exclude surgery until you are sure that's what you want. Pursue the matter of getting the coil fitted properly; that is, so it's comfortable and effective. With mine, it's reduced the womb lining from 14mm to 4mm in 6 months and the cancer has almost reversed so they can be effective.

As for other treatments other than surgery - I was told that early stage 1 cancer can also be treated by brachytherapy only (internal radiotherapy) but that may not be suitable if you want to try for babies! So maybe you could try again with the coil for now. I have a very competent Senior Nurse who is brillaint at fitting coils and taking biopsies, so maybe check-out getting yours removed and another refitted? Good luck whatever you choose...

Thank you so much, such a relief to hear this. And I am glad that you are recovering well