Funding when you've got pre-cancer changes that would be helped by losing weight

[shell-]

I've been in the Choose to Change program in Manchester for the past 3 months, and I'm told I need to do a minimum of six months in their group setting (I've only been in counselling with them for the past 3 months). I'm 48 and my BMI is 58; I've been overweight or obese all of my life.

Last week, I was diagnosed with pre-cancerous changes in my uterus. The gynaecologist said that with this kind of change, frequently there is cancer sitting next to the pre-cancer changes, but they don't get picked up with the biopsy.

When I was given the diagnosis, the gynaecologist told me they'd normally have me straight in for a hysterectomy. But, because of my weight, they won't do it as it is too much of a risk. My BMI would need to be 40 or below to have a hysterectomy.

I told her about my decision to have weight loss surgery, and where I was in the journey to get it. She was very eager to do anything she could to help forward it along, and said she'd be writing to my GP. She felt this would definitely improve my prognosis.

One of the biggest risk factors for uterine cancer is being overweight or obese. (the other two big ones are having an early period - check, I was 9 when I started - and never having children - check, again...figures my lifelong conscious decision not to would lead to problems later!).

Needless to say, I'm terrified. I've got a ticking time bomb inside of me, that they're treating with hormones, but that's not always effective.

Has anyone experienced something similar? Were you able to get your funding through quicker due to a diagnosis like this?

 

[Yvessa]

I'm afraid I can't help, but just wanted to let you know that people are listening. I do hope that you get your funding through quickly - what an awful time you're having of it.

 

[sarahrob]

Hi shell, sorry to hear you're having such a rough time.

I was diagnosed with early stage but aggressive cervical cancer a couple of years ago. I was fortunate that they could remove the growths under local, as the hospital were extremely reluctant to put me through a general anaesthetic. In my last op the oncologist did explain that they were cutting as much as they could under local, if they didn't manage to remove everything I would have to have a hysterectomy. My high BMI wouldn't prevent the hysterectomy, but it would have to be an open procedure rather than keyhole, and the risk of the op would be high.

I don't know how it will impact your funding, but I truly hope it speeds things along.

 

[shell-]

I'm afraid I can't help, but just wanted to let you know that people are listening. I do hope that you get your funding through quickly - what an awful time you're having of it.

Many thanks!

Hi shell, sorry to hear you're having such a rough time.

I was diagnosed with early stage but aggressive cervical cancer a couple of years ago. I was fortunate that they could remove the growths under local, as the hospital were extremely reluctant to put me through a general anaesthetic. In my last op the oncologist did explain that they were cutting as much as they could under local, if they didn't manage to remove everything I would have to have a hysterectomy. My high BMI wouldn't prevent the hysterectomy, but it would have to be an open procedure rather than keyhole, and the risk of the op would be high.

I don't know how it will impact your funding, but I truly hope it speeds things along.

Thank you for sharing your experience, I'm sorry you went through this.

If my pre-cancer cells turn cancerous (or the cells stay the same but they pick up cancer at the next biopsy early next year), then I'm assuming they'll do the hysterectomy then. But I - and my doctor - really don't want me to have to let it progress this far!

Thanks for the kind words.

 

[sylvercraft]

Hi Shell
I was in a similar situation about 9 years ago - I had ovarian cysts and was told that I needed a hysterectomy. My local gyny dept wouldn't do it and referred me to St Mary's at Manchester. They wouldn't do it either because of my weight and put me on hormone treatment. This worked and the cysts shrunk. I didn't think about WLS until 2008 (BMI 61 & 24 stone)- went through 3 years of weight management etc and finally got my date for bypass 28 Nov 2011. On 16 Nov 2011 was diagnosed with endometrial cancer. As you can imagine my world turned upside down - I wanted the hysterectomy and to forget the bypass but they still said no.
I was under Professor Ammori at Salford for WLS. The team were absolutely fab, I couldn't ask for better care. Prof A helped so much in reassuring me, along with my gynaecologist of course, that the cancer could wait and I had my bypass on the due date and hysterectomy in April 2012.
Just wanted to reassure you, as I saw you were in M/c. I am now feeling great - no further treatment was necessary after the hys'tomy and to date I have lost just over 11 stone.
Keep your chin up. Best wishes Syl:flowers: xx

 

[Andy1968]

Best wishes Shell..sorry that you have all this worry. Fingers crossed all will work out for you hun.
Take Care

Andy xx

 

[shell-]

Hi Shell
I was in a similar situation about 9 years ago - I had ovarian cysts and was told that I needed a hysterectomy. My local gyny dept wouldn't do it and referred me to St Mary's at Manchester. They wouldn't do it either because of my weight and put me on hormone treatment. This worked and the cysts shrunk. I didn't think about WLS until 2008 (BMI 61 & 24 stone)- went through 3 years of weight management etc and finally got my date for bypass 28 Nov 2011. On 16 Nov 2011 was diagnosed with endometrial cancer. As you can imagine my world turned upside down - I wanted the hysterectomy and to forget the bypass but they still said no.
I was under Professor Ammori at Salford for WLS. The team were absolutely fab, I couldn't ask for better care. Prof A helped so much in reassuring me, along with my gynaecologist of course, that the cancer could wait and I had my bypass on the due date and hysterectomy in April 2012.
Just wanted to reassure you, as I saw you were in M/c. I am now feeling great - no further treatment was necessary after the hys'tomy and to date I have lost just over 11 stone.
Keep your chin up. Best wishes Syl:flowers: xx

Thank you for sharing this, you've put my mind at ease a bit! I was referred to St Mary's directly when I went to my GP about heavy periods, but it is my local hospital.

I'm really hoping that Professor Ammori will be the person that I end up with, I've heard such great things about him from so many people. You've just reinforced this!

How did your recovery from the hysterectomy compare to your recovery from WLS? I've been told it is a much tougher operation to recover from, but that doesn't seem to make sense to me.

Thanks again, and fingers crossed my GP and the gynaecologist can push this forward a bit, instead of leaving me on the path with the "lifestyle intervention" stuff for months and months!

 

[shell-]

Best wishes Shell..sorry that you have all this worry. Fingers crossed all will work out for you hun.
Take Care

Andy xx

Many thanks!

 

[sylvercraft]

Shell I hope that they get you sorted out as soon as they can. As far as the surgery that I had, the bypass was a more difficult recovery as I also had my gall bladder removed and had a problem with that, needing a further operation (all keyhole though). The problem was nothing to do with the bypass - I wouldn't want to put anyone off going ahead. My recovery was over the Christmas period but I was back at work in January - no problem there. The hysterectomy was just five months after the bypass, also laparoscopic. I took four months off work and did exactly as I was told ie no lifting and rested when I felt like it - I have a wonderful husband to look after me - just the two of us at home so that is easy. Don't know how ladies with children cope I must say!! Also my recovery was at the time of the Olympics and Wimbledon on the telly so any excuse as far as I'm concerned - perfect timing! For me the physical recovery has been OK - mentally the bypass is a much harder thing to do, change of life really! I wish you well and will answer any questions or help if you feel I can be of support. Love and hugs. Syl

 

[shell-]

Shell I hope that they get you sorted out as soon as they can. As far as the surgery that I had, the bypass was a more difficult recovery as I also had my gall bladder removed and had a problem with that, needing a further operation (all keyhole though). The problem was nothing to do with the bypass - I wouldn't want to put anyone off going ahead. My recovery was over the Christmas period but I was back at work in January - no problem there. The hysterectomy was just five months after the bypass, also laparoscopic. I took four months off work and did exactly as I was told ie no lifting and rested when I felt like it - I have a wonderful husband to look after me - just the two of us at home so that is easy. Don't know how ladies with children cope I must say!! Also my recovery was at the time of the Olympics and Wimbledon on the telly so any excuse as far as I'm concerned - perfect timing! For me the physical recovery has been OK - mentally the bypass is a much harder thing to do, change of life really! I wish you well and will answer any questions or help if you feel I can be of support. Love and hugs. Syl

Wow, four months off of work?! I definitely can't afford that My family lives on the other side of the ocean, and I'm divorced....if I can't work, I can't pay the rent, etc. But yes, I agree - no idea how women who've had them and have young children would cope!

I had my gall bladder out (open procedure) many, many years ago when I was a teenager, and I remember how difficult that was with the recovery.

Again, thanks for sharing your experiences with me, it is much appreciated!

 

[princess4d4]

hiya cant say i have been in this situation but i have had a hysterectomy for other reasons i had this done by keyhole when i weighed in at 27 stone all went fine no complications it is difficult to recover from and weird feeling even now as things move about as they have more room but you get used to that hope all goes well for you and you get an answer soon

 

[shell-]

hiya cant say i have been in this situation but i have had a hysterectomy for other reasons i had this done by keyhole when i weighed in at 27 stone all went fine no complications it is difficult to recover from and weird feeling even now as things move about as they have more room but you get used to that hope all goes well for you and you get an answer soon

Glad to hear your surgery went fine!

If you don't mind me asking, what do you mean about feeling weird with things moving?

Thanks for your message and kind wishes.

 

[shell-]

Well, I met with the GP yesterday. The appointment was horrific on many, many levels. I won't go into specifics, but I was told that it wouldn't matter if I waited another couple of years (!?!), and very, very, very few people have WLS on the NHS.

The GP hadn't yet received the letter from my consultant, which arrived at my house yesterday. I've scheduled another appointment with a different GP at the practice for early next week.

I'm trying to figure out my next steps if this appointment is as fruitless as the last.

 

[Mazza]

Hi Shell, I was in a similar position to you. I finally had a hysterectomy 6 years after having problems and after losing 5 stone with my band. A smear test which identified pre cancerous cells was the reason for me finally getting the op.

Here's a post I made after my op to remove everything in 2010. If you take anything from it, don't let them fob you off! Good luck xx

"Other news I have been back to the hospital today for my check up after my hysterectomy. Im pleased to be discharged but still annoyed (more so know) that they kept fobbing me off. The doctor went through the hystology to say I was gob smacked is an understatement! It turns out I had an endometrial cyst on my right ovary - the site of my pain! when I was told there was nothing there. Endometriosis not only in my abdominal cavity but also in my uterus plus (her words) multiple, multipe fybroids and more cysts!

I was first admitted to hospital 6 years ago with abdominal pain which was exactly the same as the pain I had with a cyst whilst pregnant. 6 years ago a scan would have revealed all of these things without me having to go through years of treatment and weight gain/loss plus 3 laparoscopies.

Oh well, it just goes to show you should trust your own judgement sometimes. I was categorically told there were no cysts, no fybroids and only scars (adhesions) and endometriosis."

 

[shell-]

Hi Shell, I was in a similar position to you. I finally had a hysterectomy 6 years after having problems and after losing 5 stone with my band. A smear test which identified pre cancerous cells was the reason for me finally getting the op.

Here's a post I made after my op to remove everything in 2010. If you take anything from it, don't let them fob you off! Good luck xx

"Other news I have been back to the hospital today for my check up after my hysterectomy. Im pleased to be discharged but still annoyed (more so know) that they kept fobbing me off. The doctor went through the hystology to say I was gob smacked is an understatement! It turns out I had an endometrial cyst on my right ovary - the site of my pain! when I was told there was nothing there. Endometriosis not only in my abdominal cavity but also in my uterus plus (her words) multiple, multipe fybroids and more cysts!

I was first admitted to hospital 6 years ago with abdominal pain which was exactly the same as the pain I had with a cyst whilst pregnant. 6 years ago a scan would have revealed all of these things without me having to go through years of treatment and weight gain/loss plus 3 laparoscopies.

Oh well, it just goes to show you should trust your own judgement sometimes. I was categorically told there were no cysts, no fybroids and only scars (adhesions) and endometriosis."

My god, that's awful. I'm shaking my head. Were you the victim of the "you're fat, that's the cause of every problem you have, from an earache to a broken finger" syndrome?

 

[Leda]

Hello, I'm a newbie who has just registered and your reply is my first post. I have been referred to the weight loss management centre and now await my first appointment although they told me there's a 3 month waiting list. I don't know how long it takes to the point of getting my surgery in the Wakefield area. I have hypertension,asthma, hypothyroidism and borderline diabetes. I'm thinking gastric sleeve but will decide later. Five years ago I had a laparoscopic hysterectomy for endometrial polyps with atypia hyperplasia. I weighed 19 stones at the time and felt fine after just one day, hardly any pain and no complications. A week later I found that I had had stage 1a endometrial carcinoma and was probably caused because of my weight. I was also wondering if this could help me get my surgery any quicker. I didn't need further treatment but have managed to put on a few more stones since this. Looking forward to speaking with you all and sharing my journey. : )

 

[Mazza]

My god, that's awful. I'm shaking my head. Were you the victim of the "you're fat, that's the cause of every problem you have, from an earache to a broken finger" syndrome?

Yeah I know

When I started to get problems I wasn't overweight, all of the treatments saw me put on 6 1/2 stone and then, yes - it was all down to my weight!!

 

[Leda]

Hello, almost 5 years ago I had a polypectomy that came back as hyperplasia with atypia changes. I was 49 and 19 st though was dieting and had lost 2 st at that point. The consultant told me as I had had all my children he was going to give me a hysterectomy in 3 weeks as 10% of these cases are already cancer as the polyps get their blood supply from the uterus. Because of my size he was going to do a total hysterectomy laparoscopily. I had no pain after first day and left hospital after 2 days. A week later I was told that there was a cancer inside the uterus (endometrial carcinoma stage 1a) and was caused because old my weight . No further treatment just check ups which I will be having my last in jan. I put on 3 and a half stone since then! I believe it is one factor in my medical history that my dr suggested WLS last month. Good luck, I hope all goes well, I'm still waiting for my first appointment. X

 

[Leda]

Haha, I am so sorry, I didn't realise I already replied to your post! That's another thing, memory loss after menopause lol x

 

[shell-]

Hello, almost 5 years ago I had a polypectomy that came back as hyperplasia with atypia changes. I was 49 and 19 st though was dieting and had lost 2 st at that point. The consultant told me as I had had all my children he was going to give me a hysterectomy in 3 weeks as 10% of these cases are already cancer as the polyps get their blood supply from the uterus. Because of my size he was going to do a total hysterectomy laparoscopily. I had no pain after first day and left hospital after 2 days. A week later I was told that there was a cancer inside the uterus (endometrial carcinoma stage 1a) and was caused because old my weight . No further treatment just check ups which I will be having my last in jan. I put on 3 and a half stone since then! I believe it is one factor in my medical history that my dr suggested WLS last month. Good luck, I hope all goes well, I'm still waiting for my first appointment. X

Thanks for your responses! I doubt your situation will speed things up a bit, but it might make things smoother for your journey. Good luck!