My name is Nicola, this is my first ever message on here, actually it's my first time asking for information and help. Which is shocking when you think about it I'm 40 years old and I was diagnosed with cervical cancer jan 2009 aged 29 years old. I had an emergency surgery resulting in the removal of my pregnancy, and a hysterectomy.
I then had radiotherapy, chemotherapy and bracker therapy
I'm now cancer free.
I take HRT 2mg every day, I'm told I'll take this until the full age of menopause..........not really sure when this is.
im really struggling not being able to talk to someone who has gone through the same as me. The effects of the menopause is really starting to affect me. I'm feeling down and old! and the weight gain is horrid, I'm definitely the oldest 40 year old around and the biggest. My weight doesn't come of like it use to, and my enthusiasm for excercise has gone. Does anyone else feel like this? is there any help out there? thank you for reading my message x
I had a similar experience to you (see my post wide awake). I was given hrt and to be totally honest I felt dreadful. I am only 11 months out of treatment but I couldn't cope with how I felt. I hurt all over, I was so tired and I felt numb. I ended up seeing a private gyneurologist in London and she advised I was on such a stupid amount of hormones and that I should be on 100% more inc every other day testosterone. Its been 5 weeks and I feel back to my old self... OK my vagina is still on the numbish side but I get flutters of something down south rather than the dry desert it was 5 weeks ago. The gyneurologist explained that we should be on higher amounts than a normal menapausal woman as we have been blasted and had everything melted/buent/cutout all in one go. I'm now on bioidentical hormones and I feel so so so much better. Where are you based? I can give you her details. She works both privately and NHS. Inbox me if you need anything. X
I am sure so many of us can relate to your post (I am 34, 5 years post treatment, and also feel like a very old 34).
I guess it's an ongoing process getting used to our "new" normal, and also finding ways to make ourselves feel better/pep ourselves up. It can be exhausting though.
I am glad Harvitt could share that referral for you.
Please do not forget to pop back here if you just need to talk.
When I finished radiation in May 2019, I was prescribed HRT Premarin, both a pill and vaginal cream. I wasn't even having menopausal symptoms but when I'd take the pills, I started having hot flashes and began to gain weight very very fast. I even asked the pharmacist if it was the Premarin was the one causing an increase in appetite. He said yes, that's a side effect.
I was so afraid of gaining even more weight that I stopped taking the Premarin. The hot flashes also stopped. I did NOT want to have to deal with weight gain at all coz losing weight is so hard and excess weight a risk factor for overall health. I started again a few months later but after having a recurrence 3 months later, I stopped again and never restarted. I know the main reason for the HRT was for my bone health so I'm hoping I've been active enough to counteract bone loss.
It's been 2 yrs since I had radiation and now 9 months since chemo for the recurrence. I've not had any menopause symptoms except a brief period of hot flashes that lasted a couple months and then just dissapeared. I'm 47. I've maintained my weight and never allow myself to go over 125 lbs. When I was taking the HRT I shot up to the 130s very fast.
Bone health is very important so I'm wondering if you might want to consider having some checks done e.g. ask your GP for a DEXA scan, blood test for vitamin D levels etc.
I'm in my mid sixties so quite a bit older than you but I was recently diagnosed with compression fractures in 2 of my lumbar vertebrae hence I'm quite focussed on bone health at the moment. The doc thinks it's very likely that my radiotherapy treatment has accelerated the deterioration of my bones. I've always been very active and had been doing fairly serious weight training for a few years before my cc diagnsois
The Royal Osteoporsosis Society has a nurse led helpline which I have found very helpful in making decisions about my bone health: https://theros.org.uk/
Thanks for the heads up. Yeah, I'll definitely get an appointment to have a bone scan. I'm only 47 so I'd hate to cause myself bone problems and osteoporosis. I do supplement Vitamin D and constantly check my levels. My most recent one was a couple weeks ago, it was 70ng/ml (normal range is 30-100ng/ml).
Were you on HRT after radiation or were you already in menopause? What treatment did you get for the fractures and was there a precipitating event that led to the fractures? Like a particular activity or was a gradual thing? Also, from your signature, how are you dealing with the lymphedema?
Regarding the HRT, I also stopped because I had a recurrence 3 months after starting to take it again so I developed this paranoia that it was a contributing factor. And when I mentioned it to my doctor after chemo ended and I got a NED scan, I asked him if I should start taking it again and he said "don't change anything". So I didn't want to jinx my good results. Even though everything says, CC is not hormon driven, I'm still in that paranoid stage. After my PET in Aug 2021, if that's clear, then I think, if it's not too late, I'll start it again. Hopefully my bones haven't suffered too much. I remember my radiation oncologist telling me in May 2019 after radiation ended, that she wants me to take it for 2 yrs and definitely 1 yr at least. But the stage 4 messed with my head and I got superstitious about everything I was doing in the months prior to the diagnosis.
Thanks again and also for the link. I checked it out.
I wasn't on HRT after radiation; I had a natural menopause in 2007 age 51y. I was interested in HRT then but my GP was against it. My Mum had severe osteoporosis so I've known for some time that I had a risk for it.
I fractured a wrist in 2013 and my DEXA scan result then showed I had osteopaenia in my hip and spine; I decided not to take medication (as advised) but to have a diet that provided a good amount of calcium, supplemented with vitamin D and took up weight training (was very proud of my core strength lol).
November 2017 I had a CT-scan as part of my cancer follow up care and that's when the crush fractures in my lumbar vertebrae were found. A subsequent DEXA scan early this year showed I have pronounced osteoporosis in my hip and spine so I reluctantly conceded to taking medication; I'm into my second month of taking alendronic acid along with with calcium/vitamin D3 supplements. I'm not aware there was any precipitating event leading to my vertebral fractures, it seems they just happened; I couldn't even be sure when they occurred but I did have a very painful lower back shortly after my cancer treatment was completed - it took about 3-4 months and lots of physio before I was reasonably comfortable again. It seems I've lost half an inch in height over the past few years which isn't too bad but nevertheless has alarmed me (I'm quite body conscious) but luckily I'm not in pain although my back does get achey and stiff especially if I stay in one position for too long. I recently had an appointment with a Rheumatologist and she felt that because of the big change in my DEXA scan results between 2013 and 2021 that it was likely the radiotherapy had caused some damage to my bones.
On the subject of lymphoedema; I think it's possibly my worst side effect. It started in my my lower abomen/groin soon after completion of treatment then over the next 2 years crept down one leg in to my foot and toes. I've been attending an NHS lymphoedema clinic since autumn 2017; I wear a custom made class 2 flat knit thigh length stocking plus toe caps. It's now quite difficult to find a pair of shoes to fit both feet comfortably and I can't stand still comfortably or walk long distances the way I used to. I also went private and got an ICG lymphography scan at the *Oxford Lymphoedema Practice with a view to getting LVA surgery; unfortunately I'm not suitable but I came away understanding quite a bit more about my condition.
I am so sorry for all you have been through. How are you now? Reading your posts, it sounds like you had a recurrence 3 months after you were NED - is this correct? It sounds amazingly quick and I wonder how it was detected. I have a consultant meeting tomorrow morning having had scans to check for a possible recurrence 6 months after NED. I have no symptoms - I felt fine until the blood test results came back as outside the normal range. Now I’m feeling every twinge, of course….
Regarding HRT I’m not much help, as I’m at the other ‘end’ but I do think it’s hard to predict the effects of the menopause as it’s quite an individual thing. I started perimenopause at 50, and put on a lot of weight. Menopause started with the last period in 2010, and since then, until cancer diagnosis last Christmas, I struggled keeping my weight down and had plateaued higher than I would like. I briefly tangled with HRT but quickly put on more weight and my boobs were constantly ‘premenstrual’ and swollen. We switched to topical HRT for vaginal atrophy which turned out to be cancer… another story. I was still getting hot flushes. Anyway, at 64 radiotherapy would, I thought, finalise the whole process and certainly post-treatment my weight has steadily dropped and my boobs finally a normal size. I still get the occasional hot flush, which 9 months after treatment and 11 years after menopause, seems ridiculous…
So maybe for you ladies, once the menopause is complete, things will settle down. I hope so. Xx
so. Xx
