Woo Hoo!!!
Cant believe I’m happy about another hospital appointment but got my appointment date with the consultant for the ooph this Thursday.
So not so annoyed now.
S x
Good luck for Thursday let me know how you get on
Love and hugs
Karen
I am in on the 16th July for my ooph… fits in with my schedule.
After reading the last few posts am extremely optimitistic.
Good luck ladies.
Hi Pheebster
Blimey the 16th July, thats quick. Got my appointment tomorrow so will hopefully get an idea then. Am hoping for late July or August to tie in with work. They were so great over time off for the ops and radiotherapy so would prefer not to mess them around.
Good luck with it all and to everyone who replied with suggestions, stories and info, thank you, thank you, thank you.
S x
hope all goes well tomorrow…
I’d be interested to know how long they suggest you stay on Tamoxifen once the ovaries are out. From memory I think I was told 1 month then over onto something else.
Hi there
Well what a waste of time that was, they were running an hour late and when I saw the surgeon he at first tried to talk me into a full hysterectomy and when I said I would rather not he said he doesnt do the keyhole surgery and would have to be referred to someone who does. He said he would try to get me on the list that was the shortest so I am now waiting for another appointment. The most annoying thing is I now have to make up 2 and a half hours with work.
Ah well never mind, I suppose it will happen sooner or later.
I’m not sure about the tamoxifen issue, some people seem to stay on it and other change over. Like everything in this journey there doesnt seem to be any standard answer. As soon as I know I will get let you know. I have a check up in August so I presume it will be talked about then.
S x
what a pain in the backside. These people have no bloody respect for our time or our lives come to that.
I hope you get on a list soon…I will stay in touch with this thread and see how we go.
Have a nice weekend…
Hi Doodle32
I am having ooph next month and today seen onc.
He said I will stay on tamox until I have been on it for 2 years (9mths time) at which time I can move to arimidex. Thought you would only need tamox for 2 years as thats when they consider you menopausal.
Hi Lolly,
Good luck with your op, im due to see my onc next tues it will be interesting to see whst he has to say as i havent seen him since last August when my rads finished he’s just sent for me. Then on wed i finally go in to have my ports removed yippeeeee.
So sorry Custard that your app didnt go as planned its so fustrating when youve siked yourself up for it only to be told they cant do what you wanted. Fingers crossed that you get another app soon and the list wont be to long.
Take Care
Leslee x
Hi there all and good luck to leslee, Doodle and all and as ever thanks for the information.
Just a quick update, I got a letter advising that my appointment on the 9th July had been changed to the 16th. Two questions, 1. what appointment on the 9th (hadnt heard about that one) and 2. why was my appointment on the 16th with the same man who I saw in June who couldnt do the keyhole ooph. Needless to say I rang up the hospital appointments line who said ther is another letter on its way for a different appointment on the 17th July with another surgeon.
Well enough on that. We have just got back from a weekend in Yorkshire where we did the Ribbon Walk at Harewood House.
We had a fantastic day, met some lovely people and have raised nearly £700.00 between us. We are very tired and ache cant describe how we feel but really enjoyed it.
Love and luck to all as ever and will keep you posted on my next chapter in the great OOPH saga!!!
S x
I find it interesting (and a little disturbing) to read how different oncologists prescribe different drugs at different times following surgery.
I am wondering if I’ve misunderstood that I will stop Tamoxifen after 2 months and move onto another drug.
Nothing is ever straight forward with BC!
Hi Guys
Just to let you know, had my appointment today and am on the list. It looks like it will be in November but no problem at least I’m on the list.
Thanks everyone for the input and advice.
S x
Good luck…had mine a week ago today and haven’t felt better since before chemo. I now believe doctors when they tell you so many things are hormone related… Early days I know, but other than feeling groggy for a day or so following anaesthetic (which I am never good with) I have no complaints.
Keep us up to date…
Hey there Pheebster,
Thanks for that and glad to hear all went well, I know what you mean about the hormones, the sliver lining in all this is no more periods. I wonder if I can talk them into a sneeky tummy tuck while I am under.
I have an ultrasound appointment on the 7th August so will hopefully know more by then.
Keep well Hun and be good to yourself.
S x
7th August…only a couple of weeks away! I could have had mine earlier but I wanted to lose some chemo weight and give my poor veins a chance to recover (which they haven’t)!!!
I had keyhole. Went down to theatre about 9.00 a.m. and was back in recovery well before 11.00. They kept me for the night, which I think was a good thing, as I was puking badly and apparently bled quite a bit from the belly button (which I would never have known). I had only 3 teeny tiny cuts - one in the belly button, one on my c-section scar and one on my left hip…for whatever reason they didn’t cut on the right side??? By about 4 p.m. that evening I had strip washed, put my own PJ’s on ate dinner and had visitors.
My Consultant popped in around 8.30 that night (weel impressed) and told me everything had gone well, my ovaries looked totally healthy (big sigh of relief) and just said I should expect some abdominal bruising, which kicked in a couple of days later and is now fading quickly.
I slept and was discharged at 9 a.m. the next day…and not one hot flush!!! I’ve had a couple since but nothing compared to pre-ooph. My skin is better and I am supple in my joints again. No tears or tantrums yet…but watch this space!!!
Go for it sista!!!
Hi Custard
Just wanted to let you know I had my ooph 2 wks ago and am feeling fine now. I went in at 8am, down to theatre at 11am and was home by 3pm. My flushes are no worse than from the zoladex, just a handful of warm flushes each day. Will change from tamoxifen to femera or arimidex next april when I will be 2yrs menopausal from treatment (im 35).
All the best xx
Hi Pheebster and Lolly
Thanks for the low down and thank you for taking the time to explain the op. I’m really glad it went well for both of you and it makes me feel even better about the decision. I’m expecting the actual op in November. I would love to have it tomorrow but its a 12 to 14 week waiting list so I have to wait until after my holiday in October. I’m really excited now at the thought my aches and pains may be going. I thought this was it for the rest of my life so its made me more hopeful too.
I was 40 6 months after DX and a bit annoyed to say the least…not how I expected my 40th to be!!! so I am going to put it on hold until all the treatment has ended and declare 45 the new 40.
Thanks again ladies, I dont know what I would do without you.
Shonagh x
Hi ladies, I’m after a bit of advice. Last week my onc took me off tamoxifen because it was making me feel terrible. She confirmed that, despite being 53, I’m still premenopausal, so she’s started me on Zoladex and I’m to start taking Arimidex later this week, once the tamoxifen has left my system. I asked the onc what would happen if I struggled with this drug regime and she said she’d want to remove my ovaries.
I’ve spent the last 4 days thinking about this and decided that I’d see if they would consider agreeing to do the oophorectomy now. My ovaries are no use to me at this stage of my life, going for injections every 4 weeks seems like a pain in the butt, I don’t generally respond well to medication and so I feel I’d just like to get it all over and done with now.
I spoke to the bcn this afternoon and she spent ages trying to talk me out of it. Her reasoning is this. The SEs I was experiencing from tamoxifen are not so much SEs from the drug, but from the effect of my body being deprived of oestrogen and effectively these were just menopausal symptoms. She was saying that I’m probably one of the unfortunate 20% or so of women who would go through hell and back on a naturally occurring menopause. On that reasoning, I’m going to struggle with Zoladex and Arimidex too aren’t I? And if that were the case, why would the onc suggest an oophorectomy, which would put me into an immediate, permanent menopause, and therefore would give me the same SEs as the drugs? I’m confused.
Have you ladies been on Zoladex and Arimidex or Tamoxifen? If so, what was the reasoning behind you having the oophorectomy?
Sal x
Hi Sal,
I am 18 months into a two year course of zoladex and 19 months into a 5 year course of tamoxifen. My reason for oopherectomy is that I am was 39 when DX and my choices were chemotherapy with rads and tamoxifen or rads, 2 yrs zoladex and tamoxifen with the oopherectomy due to being quite young and being possibly miles away from menopause.
I seem to have managed with the zoladex menopause ok, hot flushes and aching joints are my main gripes but on the plus side I no longer have migraines, get spots and the obvious no periods. The 4 week thing is a pain in the backside and trying to organize holidays has been problematic but its a small gripe and one I am just glad I am around to gripe about. I am hoping that the oopherectomy menopause will be the same as the zoladex one but without the peaks and troughs. I never suffered from PMS so asume thats why I’m not suffering with mood swings now (although I’m sure my husband would beg to differ).
Sorry no words of wisdom on this, Good luck with whichever you decide to go for.
Shonagh x
Hi Sal
I was dx at 34 so my onc put me on zoladex and tamoxifen but said at any time I could stop the zoladex and have ovaries removed.
I had my ovaries removed 3 weeks ago after 15 months of zoladex. I will change from tamox to arimidex or similar next april.
The only side effects I have ever had are a few warm flushes, and nothing has changed since the op.
If you have keyhole its a very simple op, I was out the same day, and its much easier than being tied to having zoladex every 4 weeks.
I am happy with my decision as my zoladex would have finished next year when I would only be 36 and therefore not menopausal. Also I have removed the risk of ovarian cancer too.
Obviously if you are having bad side effects of the menopause then its a harder decision, but then the menopause is going to happen to us all sooner or later.
Good luck x