After a recent diagnosis of stage 1a2 adenocarcinoma I have been advised to have a hysterectomy. This will be an abdominal incision and tubes, ovaries will be removed too. I have been given the general information from the hospital but I have now made the mistake of googling and have scared myself half to death!!
I've found stories of links to Alzheimer's, Parkinson's, poor eyesight, heart disease, osteoporosis etc etc. when I asked the consultant about risks of heart disease and osteoporosis he was very matter of fact and said excersise will help with bones and they can check cholesterol and treat if required.
what I would to know is if there are ladies out there that are a few years post surgery and can give me a bit of feedback. I'm 40 so will be going through a surgical menopause
I am 53 years old and three years post radical hysterectomy. I was probably in the early stages of natural menopause when my journey kicked off but it's hard to say, my symptoms may have been related to the cancer and not the menopause. Probably a bit of both.
There is heaps and heaps of blurb out there about what the menopause does and doesn't do, and we are all different. Fact; men in their later years also get Alzheimers, Parkinsons, poor eyesight, heart disease, etc, etc. These are more likely to be symptoms of living to a respectable age and not symptoms of menopause, be it natural or surgical. I am more inclined to believe that there may be a link to osteoporosis but if you take yourself for a decent brisk walk every day you should be very low risk. If walking really isn't your bag then just get off the bus one or two stops early.
It's possible, though I couldn't say for sure, that with a surgical menopause you get through it from start to finish more quickly than people who's ovaries just fade away slowly. You may or may not be offered HRT. I am not allowed it and to be perfctly honest, am very glad to have the excuse not to go down that road, but as I said earlier, we are all different and you and your doctors will work out together what is the best route for you.
Google is a great temptation but a glass of wine is probably better for you ;-)
thanks for the reply, I'm liking your thinking re. Glass of wine!!
I think I'm just getting pre op wobbles but was really scaring myself last night with all the bloody horror stories, perhaps people are not interested in telling nice hysterectomy stories becasie I can't find much out there. I was worried about the actual surgery but not now, my main concern is the post op hormone-less recovery.
I told myself not to google when I was waiting for my diagnosis but stupidly went down the google path again. Thanks for the tips and take care
I have been googling this weekend too, all about recurrance rates! NOT a good idea! Let's just say that I think I might beg for chemo now whereas before I wanted to avoid it if possible.
i don't know anything about long term hysterectomy effects, but about half of all the ladies I know seem to have had a hysterectomy, for various reasons, and all of them are glad to have had it done.
i think we just need to take all our health issues into account and work out how to proceed now in order to give ourselves the brightest futures possible.
im sorry that you are worried about recurrence, hope that it is not based on news you have received. Google is an absolute nightmare, I'm a nurse and should know bloody better but I can't stop looking!! The more I find the more I am dreading my surgery. Ultimately I know I am in a very privileged position, they are sure my cancer is removed and the hysterectomy is the drs being extra careful. I am very aware that others are not is such a good position. However I'm still very nervous and can't stop 'researching' although how much is actually based on proper evidence remains to be seem!!
I hope you are ok and the MRI situation is just them being extra cautious. Good luck, stay well and stay as positive as you can. If all else fails drink wine!
Just to say that my hystercetomy went far better than I thought it would. I was petrified and had googled like crazy but afterwards I wish I hadnt wasted so much time worrying like I did. I still get concerned about recurrence but its not an all consuming thought like it used to be. Time is a great healer to the mind as well as well as the body.
I get a few aches and pains now but nothing more than what I had before the op.
The one strange thing that happened to me, lol, was that I went off wine!!!! I LOVED wine prior to my op and strangely wasnt bothered about chocolate. Now I LOVE chocolate and don't like wine! At least it's saved hubby some money and I'm an incredibly cheap date now!!
I have had my treatment plan and it's the same as yours I think, Anne. Abdominal radical hyst. No lymph node involvement so far, although will have second MRI, and they will remove the lymph nodes to check them. Still freaking out slightly about the possibility of recurrance, despite surgeons reassurance.
so, keep the tips coming everyone!
Cheryl, not sure I'll ever be put off a glass of red!
I have no date yet, the hospitals are rushed off their feet at the minute, and my doc says he had EIGHT new cases yesterday! Blooming heck.
glad you finally have a treatment plan sorted, now you can go ahead and kiss some ass!!
From what I have been told they aren't removing any lymph nodes as my original biopsy didn't show lymph vascular involvement but I'm right there with you with the abdominal hysterectomy. They told me to pack for a 2-3 night stay but I suppose it will depend how things go. Like Cheryl says, don't google I did and worried myself to death. Thankfully Cheryl gave me some much appreciated advice and calmed my fears.
That's good you both have your treatment plan now and hopefully you will soon be on your way. I felt so much better after my op, for some strange reason I became a lot more positive then. I had nearly 40 lymph nodes removed but thankfully there was no cancer in any of them. Don't let the number alarm you, it varies so much and loads of ladies have had only single figures removed.
We all worry about recurrence but this does get better with time and the worries do ease. In the meantime try and do some nice things before you go in and have some treats. We'll all be here to support you as your journey continues, please don't hesitate to ask us anything you want to know.
jumping on this thread again! When is your hyst? I have pre op booked for next Thursday but no date for op yet.
ive been googling again and now am completely overwhelmed by the thought of what's going to happen, esp instant menopause. Have you got any further in your quest for info, or made a decision about post op treatment? should we be asking for/given things like hormonal tests/ bone density scans before hand? I think I would prefer to go down the herbal route rather than the HRT, but surely this is something that should be discussed before op? I feel kind of like I'm being thrown to the lions! This is a BIG thing, nobody has even talked to me about it!
Or is it a case of asking, again? Should I go to my GP?
gah!!!! Lovely ladies who have been through it all, help!
My surgery is scheduled for 17th, my pre op is Tuesday.
I had a bit of a wobble the other day thinking do I really want my ovaries removed. I emailed the gynae cns just to run things by her and she said because mine was adenocarcinoma there was an increased risk of ovarian metastasis compared to a squamous cancer. She told me it was ultimately my decision whether they were removed though. However after actually reading the info it's just common sense to have them removed too especially as they would end up failing at some point anyway. I knew that really but wanted reassurance that it was the right decision.
My consultant skirted around the issue of menopause and hrt so have been trying to find some info myself. He did say he could prescribe it for me when I was discharged or go and see my gp for it. He suggested a couple of herbal things to try like red clover (although not much evidence to say it works! and also soya as contains plant oestrogen. I've stocked up on omega 3 and evening primrose oil tablets so far.
As far as osteoporosis goes, he said there are supplements you can take but also said about using weight bearing and non weight beating exercise to keep the bones strong. I work at a hospital so plan on quizzing the physio and the dietitian for advice when I'm next in - will keep you posted if I find out anything of any use. The dr also said that they would keep an eye on my cholesterol too as oestrogen protecta the heart but againhe didn't seem too concerned by it all.
There are a couple of my work colleagues thati have since found out had a total hysterectomy with ovary removal at a similar age to me and 10-15 years later they have said they have not had any lasting side effects that they are aware of. Both had hrt for a few years but ended up stopping out of personal preference. It was good to see people that have had the same surgery that look and feel ok, gave me more confidence than just reading google!!
I met my cns again today when she came to review one of my patients, that was a weird moment!
Ive spoken to the dietitian about food post op, she said as they only recommend things that are evidence based she couldn't give me much positive feedback on soya/red clover but she did say it would not cause any harm if you wanted to try it. She said a balanced diet with plenty of calcium will be fine. The physio had told me to start doing some pelvic floors prior to surgery. She said 5 reps of 5 seconds is enough and try and do them regularly through the day
Any more tips I find out I'll pass on. Only awake at that ungodly hour becasie my fiancé was having back spasms and needed assistance lol
i have talked to two friends of mine who both 'had it all out', if you know what I mean! One had a HRT implant straight away, and is now on tablets, one had patches that she's still using. They both said they've felt wonderful ever since!
I think we have to be a little more careful as we have cancer, but I don't think I'm going to leave it to chance. I still can't believe how little information we're being given though. It's kind of a big thing! I might try to see my GP this week before pre op.
pre op all done, not as in depth as I thought. Was in there about 20 minutes! I've been given 2 bottles of pre op drink to make sure I don't dehydrate and also been told that after surgery fri I will probably be home Sunday.
