Cancer-free, but still in the in-between

Hi , I have just been diagnosed and am waiting for scans and surgery. I'm really worried about after as I have suffered with anxiety through meapouse and had HRT which helped . I'm now starting sertraline as had to come off HRT. 

So glad to hear your cancer free . But it must be tough finding your feet again 

I got way too close to my doctor, and he became kind of a lifeline for me. We traded family & travel pictures and I felt really "seen" -- *except* he didn't like me doing HRT for some inexplicable reason. I sent him a stupid email in January with some AI content in it about how I was under-medicated and he dropped me as a patient on the spot and now says my aftercare is fulfilled, and I have to pay for future check-ups. I find that experience more devastating than the surgery, and I feel unmoored. It was brutal to me.

Are you in the UK ?

yes. At the moment.

Strange that you have to pay for follow ups . 

What did he suggest instead of HRT ?

I thought I was covered for 2 years, but I can't find it in the paperwork.... 

I feel sure that my aftercare was covered but am going through paperwork to prove it now… I think he’s being vindictive.  So on top of grief & crazy hormones, I’m facing the financial confrontation.

Initially he told me I didn’t need HRT since my ovaries stopped producing hormones years ago. I did research (I’m a academic researcher) and produced articles proving him wrong and documented it all. He conceded, but didn’t prescribe hormones anyway. (I don’t know if he just couldn’t let go of being “right,” even after one of his gyne colleagues corroborated my research. Maybe he thought I should just tough it out....?) Well, I know nothing about any of this….

Eventually I pushed for a prescription and he gave me the lowest dose patch available – and had me cut them in half! I maintained an HRT journal that showed what a rollercoaster that put me through with no warning. He basically refused to discuss it, and wanted to chalk it up to mental health instead.  I got him to double the dose to a full patch in December (another rollercoaster), and then I stupidly sent this email with AI observations in it that had him drop me out of the blue.

I got a woman gynecologist and she switched me to gel + progesterone. When she invoiced me for the visit, we sent the invoice to my former doctor, who suddenly said I wasn’t covered for follow-ups (even though he canceled my appointment with his office for a follow-up that seemed to be covered).

January was like one shock from hell after another. (Although the follow-up showed I was cancer free, yaayyy!)

I got a “clinic letter” from the woman doctor that reported all my symptoms and her prescription, and I made a point of adding that documentation to my former doctor’s files on me to go on record about what I was going through – I feel somewhat smug about that, and it positions me to file a complaint if I want to go there. But honestly, it's all just been a nightmare.

I'm assuming you have private healthcare then ? What did you struggle with meapouse wise ? I'm really worried at this as I have had terrible anxiety for two years and my HRT kept a lid on it . They have now started me on sertraline instead so I'm hoping that helps . Are you being monitored on your HRT?

I paid Nuffield hospital cash on the barrel for my surgery (and, I thought, 2 years of aftercare anywhere within their chain, including treatment if the cancer returned).

Menopause was hardly a blink for me... Frankly, I think my ovaries must have producing significant hormones for me to go over the cliff as badly as I did when I lost them. It was quite a shock, and I felt like a crying, languishing woman chained in the cellar at times.

I'm maintaining an HRT journal and am in dialogue with the woman gynecologist, so I guess that counts as "monitored"...?

Hi VickyJo

Welcome to the Womb group.

I am sorry to hear that you had a diagnosis of endometrial cancer last summer. Having a diagnosis can feel a bit of a roller coaster and even after treatment it can still feel overwhelming. I know for me things didn't just get back to normal straight away. Good to hear that you are now cancer free. 

I am sorry to hear that your patient/doctor relationship has broken down and that things have become difficult. It sounds like you looked to him for support and it must have felt hard when that support ended. 

What is important now is that you can access the support you need from elsewhere. 

With HRT it is not routinely prescribed after endometrial cancer as it is a cancer that is often affected by hormones. I was told by my consultant that any HRT could effectively feed a cancer and risk a recurrence. I wonder if that may have been part of the reason the doctor was reluctant to prescribe it. There are certain circumstances where HRT can be offered but it is very much dependant on the type of cancer, post op results and certain genetic information. My own cancer was hormone positive. It is also a benefit/risk decision and ultimately an individual informed decision. However I know that many ladies can find menopausal symptoms very challenging. 

It sounds like your new gynaecologist is listening to you and keeping the diary of any menopausal symptoms does seem a good plan. Some people do find a surgical menopause, where the hormones drop suddenly more challenging. It sounds like she is monitoring things for you. Is she doing any follow up check ups with you? Most ladies seem to have check ups for a while after a cancer diagnosis although some may be put straight on to patient led follow up. My own appointments were every 12 weeks for 2 years and I remain on patient led follow up for 3 years. Although there can be a variation it is important that someone- whether NHS or private is responsible for this and also have explained to you the signs of recurrence that you need to look out for. 

I have not been through the situation with private healthcare that you have so not sure what to suggest, however keeping any paperwork seems wise. With NHS there is a complaints procedure that you can go through however I do not know how it would work with private care. I can understand that this is putting extra stress on you and extra concern financially. 

I wonder if it would be worth you giving the Support Line a call and talking all this through with someone. You have been through a tough time and the main thing now is that you get the support you need. 

I hope this helps a bit but if there is anything we can do to help, please do ask.

Jane

Hi Jane,

Lovely to hear from you, and thank you for the generous, supportive message.

The Support Line might be a good idea, thank you for the suggestion. I have felt pretty isolated and grief-stricken after being dropped by my doctor so abruptly, and am having jags of weeping. It's crazy that my cancer surgery was so brilliant, but the other side of it has been an unexpected nightmare.  "Grief" was not on my BINGO card.

You write: >> I was told by my consultant that any HRT could effectively feed a cancer and risk a recurrence. I wonder if that may have been part of the reason the doctor was reluctant to prescribe it.<<

I have often wondered about this myself, and wish my doctor and I could have had a frank conversation about it. It literally seemed to me like he was judging me from a moral standpoint for going on HRT, and I couldn't understand why. If he thought I was undoing all his hard work by putting the poison back in my body that he had taken out, I wish he would have said so. It would have been nice to clear the air. In my heart I didn't think he wanted me to suffer.

He told me during an initial phone call following my histology report that I should have follow-ups every 3 mths the first year and every 4 mths the second year, and the implication was that it was all included in my cost. But he's singing a different tune now, so I'll have to challenge Nuffield's accounting department or whatever. It may have been verbally conveyed and never formally put in writing. I haven't finished researching what contracts were in place yet, so I'm not sure where I stand. I just hate that I even have to hunt them down. It's just gruesome when a professional relationship turns sour. In my case, I felt like I was forced to make a choice between getting HRT to relieve my suffering OR remaining friends with my doctor. That seems terribly unfair.

-Vicky Jo