Hi Custard, replied to on other thread. But I can't cope with copy and paste stuff....I leave that to do when my daughter is around coz nomatter how much she reminds me I cannot retain just how to do it....I put it down to chemo but I really think it is old age and a general tiredness. Anyway good to have you back on board. Be kind to yourself, love Val Xx
Been out of hospital for a week and a half now and apart from the tiredness feel so much better.
Phil moved out just before I went to Spain so my Mum moved in to help me post op which has been challenging to say the least but she is going home tomorrow so can get back to some sort of normal (whatever that is these days).
For those of you who read my "another one bites the dust thread too" a quick update so you dont have to read it twice.
Phil moved into a flat in Manchester about a week before I went to Spain. He seems much calmer now we are living apart and to be honest I can see us being friends. The house is on the market, obviously not the best time to be selling but fingers crossed.
Have been for a joint pedicure today with Mum(to thank her for all her help) and took her and my sister out for Lunch (to say thank you in advance for all her help too) Still walking a bit like a sailor/weeble (a bit of rolling side to side) but managed to get home on foot from the hairdressers yesterday along the tow path with only one bench break on my own so onwards and upwards. Having a good day today. Off back to Mums tomorrow as we are going to watch Grumpy Old Women (on tour) and for a girlie night in at my other sisters in Stockport on Friday night.
Got to go now, have to pack and tidy up a bit. I have been camping out in my bedroom like a teenager so it looks like a bomb has hit it. My Mum has been fab but after 23 years of living on my own its had its moments. LOL
Love to all and thanks as ever for the love and support. I coildnt have done it with out you.
Hi Custard, Glad to see you are well enough to get back posting again. I am glad you op went well and looking forward to hearing how you are going over the next few weeks. Keep well love, and well done you. LOve Val XX
Long time since we exchanged chit chat, glad your op went ok, its been over a year since I had mine and it was the best thing I have ever done.
Just a quick one to say hello and I made it. Had to stay in a bit longer as the cut was from belly button to pubic bone but still here and alive to tell the tale. Will catch up properly when a bit more settled. S x
I emailed you earlier - hadn't realised what had been going on then remembered you were thinking about ooph and found this thread. So sorry for what you've been going through. Am thinking of you and sending lots of cyber hugs.
Nicola (from radiotherapy waiting room)
Hi Custard, Glad you had a good holiday in Spain. Also just wishing you all the best for tomorrow. I hope all goes well and we will ne thinking of you. Life is not fair. You look far too young to have to go through this op. Lots of love and hugs of support, love Val (Scottishlass)
Just a quick one to say Spain was Hot and its not here. Checking into hospital today for op tomorrow. GULP!!!! thanks again for all the support and if I cant log on in hospital will see you on the flip side.
Love and luck to you all.
Hi Ladies this is an update from Custard who as we speak should be on her way to Alcudia.
"I am booked in for my full hysterectomy including ovaries tubes, uterus and cervix on Monday 14th Sept. I am as Stepping Hill Hospital Jasmine Ward. I will hopefully be in touch on line or using my phone on face book as soon as I am in the land of the living."
Custard,Sorry the results are inconclusive,more waiting and worrying,what a nightmare,but look on the bright side it wasn't obviously cancer.
Just to reassure you,the rod in your back (?Harrington) will be fine with mri (I am a radiographer in MRI)but do tell the staff.
Any idea when appt will be?
Hi Custard and all ....going in hosp on 27th Aug ,for hysteroscopy /biopsy ....bloody tamoxifen ...pos oophrectomy /hysterectomy as she will not let me stop taking the Tam x
Just a quick update,
OMG what a difference a week makes. Very long story short (if you want the long version check out the "another one bites the dust" thread. Basically my husband of 5 years, partner of 15 is leaving.
Enough of that though just to say the CT scan results were a bit inconclusive so have to go back for an MRI which is scaring the pants off me as I have a 2ft metal rod in my spine for scoliosis and have always been told the two dont mix but now its all ok according the the chief of radiology.
Will let you know more when I do.
I didnt have the chemo track that was what the zoladex was for but hey ho hindsight is a wonderful thing.
I was in shock I think when they gave me the news so I'm not sure what the options are. I dont know if you remember but a couple of pages back I had an appointment with a doctor who couldnt do the keyhole as he doesnt do that well he is the one I am going back to. That will teach me to make demands!!!
On a lighter note did some excercises the other day on the the Wii Personal trainer called the plank. Basically supporting myself on my forearms and toes in a horizontal position fo 15 seconds. Blimey Charlie!! talk about aching. OUCH!!!
Glad you are getting your head round it - great news on the bloods.
I didn't think I could get keyhole as I've had a C-Section (albeit 14+ yrs ago) and I was nervous of not knowing what to expect, so I fully understand you are happier knowing what you are up against. Can they give you a vaginal hyster or is that also out of the question?
I do know the cut you have will be smaller than that which I had for my c-section, and can I just say I was up and walking round the shops in just over a week. You seem like a toughie to me - just get those painkillers in you and you will breeze it
I have also decided it's time to get myself back on track. I lost about 20lb following the end of chemo but got aa bit complacent again prior to going for the ooph. I am off to joing slimming world again this morning....no more lard-arsing. Let's face it, dieting has got to be easier than what we've just come through?
Thanks for all the support as ever.
I was a bit shocked to say the least last Friday and am feeling more reassured by the day. I got my CT scan date (17th) which is also the same day as my next BC check up (with the surgeon who didnt recommend the ooph...this should be interesting!!!!)
I'm a bit p****d off that its going to be full surgery now as its a hard mass that cant be aspirated and will mean 6-8 weeks recovery but at least I'm pre warned and not waking up to the news. The first lot of blood tests came back as negative for ovarian cancer so fingers crossed for the next lot and the CT scan.
Will keep you all up to date.
Pheebster, glad to hear you are doing well, I am now on a fitness regime to get myself in shape, hopefully they will still be looking at November so I can go on my hols in October.
Love and Luck. Shonagh x
Sorry to read your posts Custard. Can I just reassure you on something. I had CT Scan pre-chemo and was told there was a 3cm cyst on my ovary...but not to worry!! Obviously this stayed in the back of my mind and when my surgeon came ro see me after my op, I asked her if the cyst was still there. She said no, they were totally clear, and that chemo probably zapped it out.
It could be the same in your case. I had a mirena coil up til this year, and I know they are renowned for causing cysts.
I'm hoping you will get a good result from your scan...
I am nearly 4 weeks post-op now and apart from feeling tired am fine. I have noticed the hairs on my legs are growing really slowly though and the flushes have returned, but no worse than prior to the op. So far, so good
So sorry to hear your ooph news.
I wasnt given a scan before my surgery, so its a good job you were.
All the best
Yes you are right tamoxifen can thicken the endometrias (spelling!!?)
it was one of the things they were checking before my oopherectomy...see my last post on this one....
My original gyne surgeon suggested having it all out because of the tamoxifen/ endometritis issue but i opted for the keyhole just ovary removal as I have had no problems with spotting or bleeding. That seems to have all changed now and I look like I am on the route to the full hysterectomy.
I may be wrong on this but in the light of what has happened to me I dont l think just removal of the ovaries would stop the thickening but please dont just take my word for it. I'm no expert and can only go off what is happening to me.
Hope you get the answer today, there will be someone in here who will have the answer.
Love and luck, let us know how you get on.
Hi All sorry for intruding but it i need some advice ....
I am on Tamoxifen am 54 ....Recently have been experiencing back pain and daily bleeding ,my GP sent me for a scan that has resulted in the fact that my uterus is looking spongy and thick ? and so therefore I am to have the internal scan and biopsy on 20th of this month ...of course I instantly thought omg ...secondaries ! but after a bit of a wobble I now not going down that route ..for now e I did read somewhere that Tamoxifen can cause Endometriosis so if this was the case have anyone of you ladies had similar ??? Would that mean ovary removal ?
Thanx Maz x
Well had my ultrasound yesterday to make sure my ovaries are where they are supposed to be. Talk about pulling the rug out from underneath me!!!!
Long story short I have a hard 6cm mass on my right ovary so now its a CT scan (waiting for the appointment) more blood tests and no keyhole surgery. Its going to be a full cut and shut and its looking like they are going to suggest full hysterectomy as I am now going back to the original doctor.
I think I'm in shock, am numb and to top it all my husband has gone on a stag night. Was supposed to be calling me at 8ish to pick him up from the station (itstarted at lunch time) he has now rung me to say hes staying out playing poker and will see him sometime tomorrow. STUNNED isnt in it. I'm still reeling from the ovary news and now I'm on my own too. Dont think watching soppy films is a good idea so I am going to take a couple of nytol and go to bed and sulk.
Its so good hear your doing well ,it is realy good to hear when someone has a good result well done you ,keep it up
hi i was dx last may no node involvement but tumour was grade 3 aggressive and hormone reseptive, however i got away with no chemo as i have chest problems i had radiation and was put on the change by having radiaton on my oviaries and i have been great no side effects really only hot flushes which i was experiencing any way with tamoxifen, i am now on arimidex,before i had treatment i was given a bone scan and it showed that i have osteoporosis in my hips and now im on weekly tablet and high dose of calcium every day.i just had my yearly mammogram and results were ok so everything is looking good physically but mentally its always there in the back of my mind. take care everyone x
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
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.
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?
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.
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
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!!!!!
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.
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....
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.
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 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!!!!
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.
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.
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....
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.
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.
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.
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.
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.
I had bilateral salpingo ooph just over 2 years ago. It was planned for keyhole method but they found a lot of adhesion so opened me up like a can of sardines! I had to stay 4 nights instead of one but I cycled 15m round trip to my checkup 15 days after the op so I'd say don't worry about driving, lifting etc. for perhaps 2 weeks.
Just wondering how soon after the ooph you could drive? What about swimming?
Were you up and about very quickly after the op?
I have this op next month and am looking for any advice people can give.
Hello - This is the first time I've contributed to this site (if it's any help to anyone out there.) I am 43 now (diagnosed at 41) and have had everything - L mastectomy (oestrogen positive, grade 3), axillary clearance (2 nodes affected),8 cycles of chemo (TACT2 trial), 3 wks radiotherapy - then a very surprising stroke (yes!) which was quite a shock. So with hormone treatment planned: no Tamoxifen allowed as it has an increased risk of blood clots apparently. I was therefore put on Zoladex and then Arimidex tablets once my oestrogen levels were shown to be low enough. I was unhappy with having to have both drug applications indefinitely, so was given a laparascopic oopherectomy last month. I have to say that it went totally without incident and I am really pleased to have had it done. No discomfort at the time, quick recovery (in fact I went on holiday, flying abroad for the first time in 6 years 3 wks after the op.) No new menopausal side effects at all since the oopherectomy and at least I know that I am "properly" (surgically) menopausal now (not just halted with Zoladex.) My situation was a little bit complicated, having had a stroke, but I was keen to have my ovaries out from the start. Had something of a wait but that was also because I had a DIEP (belly) breast reconstruction at the end of last year. Am happy to share any of these experiences with anyone interested. Next check up with the breast clinic is tomorrow morning. Good luck to all.
I think the worry is at your age that the chemo (if you had it) and tamox can give you all the menopause symptoms but then periods can return years later.
I was surprised ooph patients stay on tamoxifen but I was told by my onc that even a year of arimidex can improve percentages of a recurrence. But as I said earlier, I think the consultants all have different ideas...and I am sure age has a great deal to do with it.
I will add one thing though - the cost of tamoxifen is around £2 to your GP whereas Arimidex is around £90 and that is per month!
Makes you wonder.....