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Steph10
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01-05-2012
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21-05-2015
02:08
Hi again, thanks for replying, I've since spoken to my local breast care nurse and the helpline here and basically both have said the advice of extending hormone treatment is still recommended since it was advised for me in 2013. Of course I was hoping the advice would be that further studies since have been carried out and extension of therapy was of no benefit, but no such luck! Sounds ungrateful! I am in fact, lucky to have meds that will hopefully destroy the cancer! So, it looks like I'll stay on exemestane for another 3yrs otherwise, if it came back, I'd never forgive myself. Bye ladies! 🙂
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20-05-2015
04:58
Hi all, just wondered if anyone had any info... I had a lumpectomy in 2010 followed by chemo and rads, then 2.5yrs tamoxifen changed to exemestane for another 2.5yrs. The last onc. I saw said that latest research recommended another 3yrs of hormone therapy after the standard 5 and wanted me to go back to 3yrs of tamoxifen after finishing the exemestane (due Aug this year). I said I was reluctant to go back on the tamoxifen as it gave me a persistant non-infected vaginal discharge, so she said staying on the exemestane would be ok. What I'd like to know is (and I will speak to a breast specialist nurse), what have other patients been told - does latest research show there's no benefit being on the meds for another 3yrs? I'd just like to be free of the meds, but obviously not if it'll definately keep the cancer at bay. Would appreciate any input! 🙂
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14-02-2013
05:45
Blondie - haven't heard of Relactagel but will have a look into this, thanks x
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13-02-2013
01:17
Hi, my sore bits and horrible vaginal discharge started whilst on chemo and I put it down to that, but 2.5yrs later it still persists. I had a swab taken but no bugs found so I reckon it's the lack of oestrogen. Just started exemestane so I don't expect it to get any better. My oncologist did prescribe vagifem when I started tamoxifen as she stated that it's absolutely safe as a miniscule amount gets into the blood stream, but it didn't work. I'm not aware of any soreness until sex is attempted so I suppose that's slightly better than some of you ladies here. Out of desperation to have sex (to please poor hubby and to keep some normality to marriage - I'd be happyish to never do it again as have no libido whatsoever), I've resorted to purchasing some ky type gel that has benzocaine in it on line. Just stick some up using a syringe prior to the act, and Bob's your uncle! it numbs the vagina somewhat to enable you to put up with a brief sexual episode.
Far from ideal, but that's the bottom line I think.
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02-02-2012
06:33
Hi Angelfalls 🙂 My onc was prepared to prescribe it as she says the amount of oestrogen that gets into the blood stream is extremely small. A friend of mine who lives in a different area was also prescribed it by her gynaecologist who said the same. Although the friend does not have breast cancer, ovarian cancer is in her family and so she doesn't want to take HRT, despite having sore bits. Both have said it's completely safe. One of my gps was horrified and would not prescribe it as that's who I asked first for it just over a year ago. I drove home in tears. I'm still getting hideous hot flushes so I can't see that a great deal is getting into my system. I had to do something, even wiping myself with loo roll caused bleeding. At least it's not that bad now. I still drink wine too, sod it, live isn't gonna be worth living otherwise!
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01-02-2012
10:01
I know what you mean with sore lady bits! Since chemo and now tamoxifen, sex is painful. Things have improved slightly since being prescribed vagifem by onc, but still not the same as it was before. I only hope things can improve further when the hormone therapy finishes.
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01-02-2012
09:44
I'm the same too. I thought this symptom started when I was on chemo and put it down to that causing a low haemoglobin count, but it has continued due to the tamoxifen effect. I also break out in a sweat when doing ordinary chores like you. I'm thinking of joining a gym to get fit, but am put off by the thought of sweating like a pig at the gentle-list of exercises.
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01-09-2011
09:45
Hi, I had my nodes removed in Jan 10 and recently, have finished a reflexology course that I'd started before I was diagnosed. I found that during the case studies I had to do which entailed doing 2-3hrs reflexology a week for about 6 weeks, my affected arm started to swell slightly. Since I've finished the course, I haven't done any reflexology (didn't like doing it tbh) my arm has returned to normal, thankfully.
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07-03-2011
08:15
I haven't tried it, but it was suggested if they got unbearable to try it by the breast care nurse.
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09-02-2011
10:47
i have the same problem after chemo and tamoxifen. I asked my GP to prescribe vagifem and the stupid woman was horrified. Fobbed me off with Replens which was crap. Saw oncologist recently and prescribed vagifem no problem. GPs really aren't up to speed with this.
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13-01-2011
02:51
Just wanted to say hi to rozita! Our ops and treatment about the same time last year. Can't believe how quickly last year went (thank God!)
Hope your knee is nothing to worry about, but I know what you mean, every ache and pain becomes possible mets.
Keep us informed. X
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31-12-2010
11:30
I was on E-CMF and hair started to grow back after I'd finished the E part, and was on the CMF. I think it seems to be the E (epirubicin) that munches hair. When my bald patches did grow back (I had the cold cap), the hair was the same as before, not coarse or curly.
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27-12-2010
08:50
Great news! I got great news on the 22nd, and it's so lovely to have a stress free Christmas!
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22-12-2010
07:53
Soooo relieved! Lump found to be scar tissue that had changed and appeared like cancer on ultrasound after radiotherapy. Surgeon was very sympathetic and offered a future op to have lump removed anyway for my peace of mind. I'll see how I feel in the next 6 months and then I go for my next check up. Christmas is on!
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15-12-2010
02:06
Hi Teresa, I'm in a similar position (my history is on my profile). I'm awaiting biopsy results of 'scar tissue' on my lumpectomy scar. I get the results next Weds 22nd. I just hope there isn't a nurse in the room. I'm currently paralyzed with fear. After having a load of E-CMF and rads, what's next? A Mx and taxotere?
Definitely bringing back memories of same time last year when on Xmas eve, told that cancer was in the sentinel node meaning another op and chemo, so Xmas was off.
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15-12-2010
10:43
I've been on Replens for about 3 weeks now and the white lumpy discharge still persists since using it. I think it's a mix of dead rehydrated skin cells and the Replens itself. I find it totally revolting and won't be attempting sex with this going on! Do others have this problem with Replens?, does it eventually go when all the old skin cells have cleared?, is Sylk any better? Has anyone with oestrogen positive cancer been prescribed vagifem? If so, who by? Sorry for all the questions, but I have to get this sorted 😞
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15-12-2010
10:20
Bumped up for anyone else to comment hopefully with good news...
I've had my 'scar tissue' lump near my lumpectomy scar ultrasounded and biopsied this week, as although the surgeon and radiographer feel that it is just scar tissue, there have been 'changes' since the ultrasound in July and the lump feels bigger. Don't get the results until middle of next week, so I am trying to cope with feeling worried sick. It's all happening the same time as last year, and I'm beginning to really hate Christmas.
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08-12-2010
01:17
I'd signed up to donate blood before I was diagnosed, but never actually got around to donating. Now I can't, but I accompanied my son when he donated back in the summer and I felt a bit emotional. A pity as my blood group is a relatively rare B.
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