Gaynor, I wasn’t even offered chemo - even though when first dx bc nurse insisted I would have chemo because of my age, so I sometimes wonder should I have insisted? I suppose we just have to be more aware of our bodies, (although think I’m neurotic at times!) And report anything we’re not happy with.
MG and alis, hope you have minimal SE with your rads, I had 15+5 boosts way back in Nov, my skin held up pretty well, just looked sun tanned, although my nipple peeled after the rads had finished (ouch!) And I seem to have developed lymphodema in my breast, which I believe can be a SE of rads 
Take care all x
Hi all,
Mine was 7mm IDC ER+ with sentinel node clear, diagnosed March 2010 when I was 65. It presumably took at least 3 years to grow as previous mammo was clear - they showed them to me side by side. (It couldn’t be located with ultra sound.)
I was supposed to have rads but they couldn’t start for 3 months because the machine was being replaced and by that time I was a nervous wreck and decided not to have them. I was terrified of losing arm function as I am the main lifter in the house. I seem to recall the onc said not having rads would increase the chance of recurrence by a tiny percentage. I then had a temporary artery blockage behind one eye - probably due to tamoxifen - and I would have blamed rads. So a load of tests at another hospital department, fortunately no other cause could be found and I’m now on arimidex and supplements to stop the joint and leg aches and pains caused by that as well as adcal and protelos for osteoporosis.
The worst part has been the effect on the inside of my head and it took about 11 months to return to a new kind of normal.
Margaret
mary grace
just a wee quickie reply as i need my beddy byes…
with two members of the family (you and mum) developing bc at at young age would mean that any sisters or daughters would be eligible for early screening as your family would be deemed moderate risk and that means a slightly increased risk of developing BC than the general population.
as ofr it being genetic it would seem unlikely but not impossible, however only those in the high risk category would be eligible for genetic testing through the NHS… it is available privately but is very expensive although may reduce in time as it becomes more readily available (currently it can cost a few thousand although there is somewhere in south of England that does it for about £600 but it may not be such a rigorous test).
CCL and gaynor… i was also told id prob get chemo as i was 37, however it wasnt needed and quite glad i never as i ended up getting a new primary 3 years later in the other side so would have felt even more cheated to have gone through and still to get BC again… chemo only treats the cancer you have now (and kills off any particles which may be else where in the body from developing into cancer later on) but it wont stop one you havent got yet from developing further down the line… for most people its unlikely they would get a second cancer but as i have a gene mutation further new cancers are more common.
lulu x
hi crazycat. my bc nurse said i would need cemo because of my age. but onc said there was only 3% benefit for me, and that the tamoxifen would do just the same with less se.
margaret, i agree 17 months on and i can still struggle some days. i think a lot of its to do with side effects. early menopause. some days i justs can not function and cant wait to go back to bed. i think the worst thing for me that it has change my sex drive. fed up with thrush and water infections xxx gaynor
gaynor have you tried replense or sylk or other lubricants… they need to be used regularly over longer periods of time talking months not weeks before you see any difference but worthwhile if you can… if they are no help ask about vagifem which is very low dose oestrogen comes in 25 and 10 microgrammes and again takes a while to work but is very helpful for many…
there are 3 dedicated menopause after cancer clinics too… in liverpool, london and birmingham and i know the london one in northwick park hosp takes out of area referrals… dont suffer in silence.
Lulu x
thanks lulu34. went to my gp this morning and he has given me sylk. do i use this everyday or just before sex. he said if i was dry down below before sex that could be causing the thrush. also had white cells in my urine. thanks for your advice.you have helped me out on a few things xx gaynor
Thanks Lulu, That is pretty much what two surgeons told me… that it is possible there is a genetic link but unlikely. One said that she thought they were two random occurrences. The other that as I only have one female relative with bc or ovarian on either side that he thought that I did NOT have a link or there would have been more of a pattern (I have an older sister, mother’s sisters, female cousins, grandmother on the maternal side none of whom had bc).
It was only when the onc sighed and said that he “wouldn’t rule out a genetic link and that it was a discussion we should have down the line” that it made me wonder. I have sons, but may hopefully live to a ripe old age and have granddaughters. Who knows by then they may isolate the rogue gene so it may be worth considering in the future xx
Thanks lulu for that info, it wasn’t really explained to me, just that onc felt he didn’t want me to have it - therefore I didn’t!
Gaynor, glad your gp sorted you out with the sylk, hope it does the trick for you 
Hope everyone else is well x
Hi Gaybar, I noticed that you are on Zoladex as well as Tamoxifen & just wondered why both were necessary? I have queried Zoladex for me ( I had Grade 2 Stage 1 a year ago & had a mastectomy & implant, I was 39). Would love to hear from anyone else re Zoladex too. Rosie
Hi Gaynor, I am 47, diagnosed at age 43, in September 2007. I had grade 1, stage 1, node negative, ER+ tubular BC. I had a lumpectomy (the lump was only 8mm), and 15 rads. I was worried about burning, as I’m very fair skinned, but mainly due to the aqueous cream I think, I was fine, just very tired. I am on Tamoxifen until 2012. At the moment, I am having yearly mammos, and six monthly visits to the breast care nurse. I have been given a really good prognosis, and thank God every day that it was caught early.
Wow LynnB snap, I am also grade 1, stage 1 8mm tubular, node negative er+ WLE, rads plus tamoxifen. Sounds very similar in type, treatment and - thankfully - prognosis xx
hi roise. i was just on tamoxifen at first. my periods was still like clock work but became heavy. when i went to see my consultant he suggested zoladex because my bc was er positive and was feeding off the oestrogen. he said it would be best for me to stop my periods and to shut down the ovaries xxx gaynor
Hi Mary grace - what a coincidence! We are both very lucky to have a good prognosis. When I was first diagnosed, my son, who will be 19 on Wednesday (15 at the time) said ‘my dad left, does this mean you’ll be leaving me, too?’ It broke my heart. I was divorced in 1996, and he hasn’t seen his dad since he was eight. Thankfully, I was able to reassure him that I wasn’t going anywhere any time soon!
Thanks Gaynor.I’ve been on Tamoxifen for 9 months now & my periods continued monthly for 4 months then missed 3 months completely then 6 wkly cycles.My breast surgeon doesn’t think I need Zoladex but as I am 6/8 ER+ I don’t feel very safe just on the Tamoxifen. I think i’ll discuss it with my oncologist next time.Rosie
hi,
let me know how you get on rosie98. all the best with it xxx gaynor
NICE guidelines do not recommend the use of zoladex except in cases with a higher risk of recurrence… ie those who would normally require chemo but decline it or cannot have it may benefit from zoladex but its debatable whether it improves out come and whether having periods makes a difference or not… it used to be thought that this was the case however more recent evidence suggests its not necessary and the majority of pre-menopausal women who are on tamoxifen and didnt have chemo continue to have periods.
after chemo frequently women become post-menopausal although for many this is just a temporary thing… however for these women zoladex is sometimes given to protect the ovaries during the treatment…
this is the except from NICE (nice.org.uk/nicemedia/live/12132/43413/43413.pdf )
"Do not offer adjuvant ovarian ablation/suppression to premenopausal women with ER-positive
early invasive breast cancer who are being treated with tamoxifen and, if indicated, chemotherapy.
Offer adjuvant ovarian ablation/suppression in addition to tamoxifen to premenopausal women
with ER-positive early invasive breast cancer who have been offered chemotherapy but have
chosen not to have it. "
hope this helps.
Lulu x
hi lulu34.
does this mean there is no need for me to be on the zoladex?. just read the NICE report and my head is more mashed then it was before.sorry i no you cant answer this question, but iam so confussed. i need to speak to my bc nurse xxx gaynor
it means its unlikely to make much difference but it probably isnt gonna do you any harm if you can tolerate it…
this was from a study into using zoladex (goserelin) as an alternative to tamoxifen or as well as tamoxifen from 2008…
“Two years of goserelin treatment was as effective as 2 years of tamoxifen treatment 15 years after starting therapy. In women who did not take tamoxifen, there was a large benefit of goserelin treatment on survival and recurrence, and in women who did take tamoxifen, there was a marginal potential benefit on these outcomes when goserelin was added.”
and from another study around the same time
“the effect of goserelin was greatest among node-negative patients and in those with estrogen-receptor-positive tumors, and that their results were “consistent with the observation that the effect of goserelin may be greater in younger women who had prior chemotherapy”.”
the study only compared 2 years of tamox with two years of zoladex and tamox is given for 5 years and if they had compared this the outcome may have been different.
Lulu xx
thanks for that. you have made it much clear for me. xxx gaynor
hi.
just bummping up the thread x