This is my 1st post - It’s funny, have been through surgery,chemo,radio,trying to explain to small children & their friends why you are bald, planning your own funeral when being told all your lymph nodes are affected etc. and all the other shit we go through, and until now, have never really needed to seek support or info from elsewhere. Am now on Tamoxifen and Zolodex implants. Silly me - I though I’d done the crap bit and the hormone treatment would be a breeze. But,18 months in, and I don’t think I’ve had a month go by without huge doses of antibiotics for persistant urinary tract & viginal infections, brought on by the hormone treatment.Is anyone else experiencing this? How are you coping with it? Have the sweats under control (Star Flower Oil - great stuff)and can cope with the hormone induced (or lack of)tearful days - but this is driving me nuts (not doing much for the sex life either - or what’s left of it!) Jan
HI Jan, Gosh you have been through the mill girl, no wonder you feel tearful…but it gets to us all at some time. I have been having treatment for a long long time and am on chemo just now. I experienced a black hole a few weeks ago and it was not a nice place to be. I wasn’t tearful on this occassion I just felt…is this it…when am I going to feel normal again. The last day or so has been better. But you need to be kind to yourself. What you are feeling is par for the course but you won’t feel like this always, I promise you. I have had BC for twenty years, bone mets for the last ten years and have had the works over the years…and you can feel better…one day at a time Jan. When you feel like this again just get back on here coz we share things here and help each other through the dark days and the good ones too. Much love and cuddles too, love Val (Scottishlass) X
I don’t post on here very often, but really feel for you with what you are going through. I was diagnosed just over a year ago and after WLE, chemo and rads was put on Tamoxifen last November. Since the summer of this year I seem to be getting urinary tract infections every couple of months for which I have needed antibiotics so I can understand why you are feeling the way you are - it is just totally miserable when all you want to do is get some normality back to life. The breast clinic suggested and dispensed a hormone cream but to date I haven’t used it because my cancer was strongly ER and PR + and I am understandably concerned about the implications of using it. I spoke with my GP on Tuesday when I went for antibiotics for yet another infection and she said she fully understood my reluctance to use the cream although it is their belief that very little is absorbed by the body - but do I want to take that risk. Apparently the infections are due to the menopausal symptoms and everything drying up - gross isn’t it? Mr husband and used to have a healthy sex life but that has almost disappeared due to this problem as sex seems to aggravate it. I have been trying some natural lubricants such as Sylk but they don’t seem to prevent the recurring infections. I don’t know that I can offer any helpful advice but I just wanted to let you know that you are not on your own. I don’t like to whinge too much as I know there are so many ladies on here with secondaries etc who are having such a tough time that my problmes just seem trivial by comparison. No one tells you about how this disease will impact your life in areas you never thought of - do they? I just keep hoping that may be this problem will settle down as I hope it does for you, Love and hugs
Unfortunately,I know exactly what you are going through! I was given Femara in October 2007 (which did shrink the tumour) but couldn’t have surgery until Jan (& Feb) 2008 because of other complications. I had WLE and axillary clearance, followed by 25 sessions of rads. The Femara gradually robbed my body of any remaining oestrogen and by about July 2008 I was having recurring thrush and suffering vaginal dryness.
It takes a hell of a lot of courage to speak about these symptoms and you feel churlish and ungrateful that hey, these guys have saved your life but left you feeling yuk! After several treatments by my GP I finally confessed ‘all’ to my oncologist and asked if I could try another hormone treatment. He changed my prescription to Tamoxifen and things improved ‘slightly’ but not radically. Next trip to oncologist I really laid it on the line and he said I could have a boost of locally applied oestrogen from a pessary named Vagifem. That was two weeks every day and then down to twice a week. It worked… but again it didn’t solve all the problems. I think he got so fed up with me he referred me to a gynecologist who again gave me a booster session of two weeks of Vagifem but it is now down to once a week. The vaginal dryness has improved but I still have simmering skin problems around the vulva and vagina which is treated with a mild steroid cream.
My oncologist (chief cheese at The Royal Marsden) has told me that locally applied oestrogen can definitely be used with Tamoxifen. Levels of lubrication will never be the same as before but it is sufficient for sexual penetration. Sylk also helps and can be prescribed on the NHS.
You may have to persist but do ask… and then ask again. Please don’t suffer in silence.
I had a mascectomy 15AUG 2005. 21 Lymph nodes removed - 17 being cancerous. I had 20 radiotherapy sessions and have been taking Arimidex for 4 years.
The joints were very painful at the beginning but started taking Arimidex at bedtime. I take painkillers when I need them but find it best to take 2-4 a day to keep them in my system.Feel very tired at times but just try to keep active without overdoing it. The headaches flushes vaginial dryness are all to do with hormones etc.ithink. I find it beneficial to plan ahead . I am 75 yrs old and my husband died 2 years prior to my getting BC.
Maybe in 12 months time I will be able to stop taking Arimidex - and then I hope to get back to bowls, gardening. If I can’t stop taking yet then I will have to succumb to granny and the knitting.
I hope thigs get better for you. -
The vaginial cream I have been pescribed is Ortho-Gynest
I,m so glad that I am not on my own. I was Dx with BC oct 08 had lumpectomy and raidotherapy. I have been on Tamoxifen scince Dec 08 and have had repeated cases of thrush. Finally this week it has all come to a head and I can not stop the tears. I know i should be being posative and I,ve done that for the last 12 months. Today is just too tricky. I have seen my gp this morning and she is going to run some repeated swabs and try too help over the next few months. It helps to know that I’m not on my own. So Thank you.
