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I am feeling really down
Hello
My doctors appointment for pathology results was this morning and he is recommending chemotherapy.My official stage is 2b high grade and he thinks 4 rounds would be beneficial and help to reduce the likelihood of a reoccurence.
Everything else was fine he is happy with how my pouch is healing and I am going back in next Monday to check it has healed enough to take the catheter out so I can loose the bag and start self catheterising.Which I will be pleased about.I just feel pretty low I was hoping for 2a and to escape chemotherapy.I am being whacked by hot flushes and he doesnt want to give me any HRT because of the health risks but they are making me feel more dreadful than the surgery.Has anyone any information on HRT as I dont think I can cope without it my poor husband had to change the sheets twice last night as I was just drenched with sweat its awful.
Lisa x -
20 Replies
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Hi
yes, you are exactly right, this is the surgery that I wanted to have but the surgeons would not touch me because of their concerns of messing up the previous RC surgery and they felt they would begin messing around with scar tissue that had already formed and might cause more problems than not. When I had the RC I asked the doctor to put the bowel in that mesh sling during surgery because I heard this can happen but he said he does not do that so thats left me in this position. It is great you are having the surgery because I hear it is very successful. -
do you know there is a great surgery to correct a rectocele? i don’t know where you live but there is a doc near philadelphia who does it. they have this mesh that they weave around your body parts that are falling out – it creates a “sling” and it lasts forever because scar tissue forms around it, similar to the way they repair a hernia. if you would like more info email me. i am having the surgery in the spring for my uterus and bladder that are falling out (cystocele).
eileen
Michael
Age 58
Stage T2-T3, muscle invasive
Married to Eileen
2 sons, ages 20 and 23
Hi,
I had a hysterectomy as well when I had my surgery. I was 40, (4 years ago) My gynecologist Oncologist said he was a full supporter of HRT and that it was so important he gave me a shot on the OR table that lasted 6 weeks and then I went on Premarin daily. About a year after my surgery I decided I should not be on HRT, fear from newspaper articles and a nurse influenced my decision) and went off it for a trial, low and behold, because I have nothing inside me, courtesy of the RC, my bowels started falling forward (rectocele) and were pushing through the vagina, sounds lovely eh? they explained this is because the vagina walls start to thin out as there is no hormone to keep them strong and thick, the only cure would have been to go back in and put the bowel in a sling. of course as with anything this does not happen to everyone, but that is my story, I was walking like a penguin and in agony, so I stay on the HRT and get on with the business of living as I can’t do it any other way.Hi Lisa…i’m on a similar patch Climara..just a lower dosage of 0.025. which is also yam based.
I believe your patch is about 3.9mg which should be good for your age. It might take a while to kick in but you’ll notice a difference in about a week.
PatLisa, thats great maybe you will get some relief now and Christmas will not be a sad thing but maybe a joyful experience instead….Ginger
Hi Lisa, so pleased to hear that you are at last getting the support and meds that you need to help you through this.
Take care. Maria x
Hi
My GP arranged for me to see a gynaecologist this morning and he was disgusted that I had been left for nearly three weeks at 37 with no HRT.The bladder is effected by female hormones which is why women suffer from incontinence when they are older and no longer produe oestragen.However he said there is no evdence that HRT is related to bladder cancer.Especially when given to younger women who have had a surgical menopause.After all HRT is just replacing what my body would have been producing for the next ten years its not adding hormones or increasing the length of time my body is subjected to them.
He was the nicest man and really reassured me that it is safe for me to take HRT he even phoned my oncologist whilst I was there to ask why they hadnt started me on it and to check they were happy for me to have it.Just for a change I spent most of the appointment in tears but I am so relieved.He has started me on an oestragen patch which reduces the effects on your liver which is good because of the chemotherapy.Its called Progynova TS if that means anything to anyone and the oestragen is soya based.
Hopefully the effects will kick in soon and I will be able to stop being so stupidly emotional.
Lisa xWell i somehow don’t think it is….some places like Hopkins and Indiana are preserving the female organs in pre-menopausal women as they say there is not an indication that it spreads there. Lets ask them!! Pat
Hi! I know exactly where you are coming from, I am almost 3 weeks out from my surgery. I have never been so miserable and depressed in all my life.
Not only do you have the surgery pain, scars etc… but now this Menapouse stuff.
The hot flashes stink but I can deal better with that than the emotions. I cry at the drop of a dime. Are you having the same problem. Both my onc and uro surg said I shouldn’t take HRT, because they do not know the cause of bladder cancer, and are not certain that it is not affected by hormones.
I hope you happier days, and I hope I can get thru just 1 day without an emotional breakdown.
LizWow..i emailed Dr. Lipov and he emailed me back directly with his personal phone number. I got home to late to call him but will let you know what he says tomorrow………Pat
Lisaloo,
Here’s the thread if you are interested in reading it…it talks about Bladder Cancer and Menopause…
http://blcforum.com/smf/index.php/topic,625.msg3320.html#msg3320
I hope you feel better soon and glad you are getting some good advice from people who have gone through this.
Your friend,
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
Hey Lisaloo,
I am not Moderator for the Invasive Bladder Cancer Section, however, I just would like to say something concerning this comment….
“She said that BC is not a hormone sensitive tumour, so there was no oncological reason not to. ”
We’ve had a discussion on this subject before. I wish I could find the thread, I will keep looking for it….
But, what I want to say, is that from what I can tell by research on the Net and by our discussions here, and by asking my Urological Surgeon/Researcher from a University Hospital the point blank question, “IS BLADDER CANCER ESTROGEN DEPENDENT?” , his point blank answer to me was, “WE DON’T KNOW.” What I gather is that the jury is still out on this issue.
I’ll keep looking for that thread. It sticks in my mind.
Good luck to you. I’ll be checking in on how you are doing.
Your Bladder Cancer Friend,
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006Hi Lisaloo…..glad you’re posting. Hey i just read about a new hormone-free therapy for hot flashes and night sweats writen by Eugene G. Lipov, M.D. of Advanced Pain Centers in Chicago. Its called stellate ganglion block, injections of a local anesthetic next to nerve tissue in your neck. The anesthetic resets your body’s temperature control and allows it to function normally.
This kind of makes a lot of sense to me…tho finding someone who knows about it and does the treatment might be tricky?? I shall look into it for you. In the meantime ask your doctor if he knows anything about it.
Whether or not estrogen has any effect on developing blc who knows….I’ve posted about one m.d. who has isolated the hormone Androgen in relationship to blc…guys have plenty of it..but we females have it also.
Anyway i do the Climara patch which is just estrogen…lowest dosage 0.025..which i put on once a week…it goes directly into the bloodstream bypassing the liver and is yam based.
By the way here is Dr. Lipov’s site…and Holly he’s near you in Hoffman Estates..
http://www.painmngt.com/dr_lipov.htmlPat
Hi Lisa
Sorry to hear you’re feeling down – with everything you’re coping with at the moment it’s hardly surprising.
On the HRT front, I had an R/C and instant menopause and didn’t cope very well with the additional symptoms, in fact the effects of this type of menopause on recovery would be an interesting research subject I think. I am in the UK and after a few months of struggling I saw my GP to ask about HRT. He referred me to a (female) oncologist who said absolutely you must have it, a low dose (the minimum) to keep symptoms at bay, and to continue until I reach what would have been the time I could expect to have been through the menopause, about 5-6 years. She said that BC is not a hormone sensitive tumour, so there was no oncological reason not to. There are other issues of course, but they are not to do with BC!
Best of luck with a good recovery
SarahLisa,
Its about that time for feeling a little bit bad, the whole thing is now coming to reality, the surgery is over but more to deal with. I don’t know much about why they advise chemo as to why they don’t, precautionary speaking. Its obvious in some cases, was the path report clean?? Well your feeling bad because of this news and the sheet thing. Don’t feel guilty about having your hubby do things, I am sure he is happy to do it, maybe he could use some tips from us caregivers?? Try to remember next week will be better, and if your concerned about the chemo ask your Doctor about it,, pro’s con’s etc. Ginger
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