Breast Cancer Now Forum

Hi Ash, I opted to have everything removed. I was tested for all known genetic links after my diagnosis but they didn’t find anything. I had previously been tested about 17 years ago that didn’t pick out any of the known variants but my family history is so strongly linked with breast and overian cancer that they have agreed I can be treated as if I did have a genetic fault and they have suggested I get re tested every 5 years incase they have discovered the link.  I had mastectomy of cancer side and preventative mastectomy of non cancer side and then both overies, tubes, womb and cervix. This was 3 years ago now when I was 37 (I was 36 when I had BC) I was sad because I hadn’t had children but the chemo and my age had probably ruined those chances anyway so I decided to go for it so I could give myself every chance of it not coming back or getting overian cancer down the line. Im also taking tamoxifen.  3 years later I do not regret my decision. I was so worried leading up to having it worrying if I was doing the right thing. Reading and getting horrified with all the menopause stories but I can honestly say it has been a lot easier than I’d thought it would be but I was a half empty glass I had prepared myself for a life of misery and it hasn’t been.  I hope you manage to make a decision. Message me if you have any questions I’ll see if I can help. X ... View more

Hi Sue, thank you for lunch reply. I do have Epsom salts I’ve used them since chemo I love them. I’ve not used them for 8 weeks now because I had my Diep reconstruction and I have a small section on my tummy that isn’t healing so can’t soak at the moment. I do have a magnesium spray I should get that out. X ... View more

My mum has BC young not sure age she was diagnosed but died from it at 34. Her mum my Nan died from Overian cancer I think at 61 my nan was one of 8 girls a number of them had ovarian cancer.  I was checked for genes about 15 years ago but nothing showed Brac negative. I was supposed to have mri from age 30 but when I reached 30 was told wait until 35 then I never got called up so chased them at 37 had my first MRI and there it was already. I now had BC  I was referred back to genetics who run more tests against I think about 36 known mutations and still nothing. They said they will offer treatments as if I was found positive as such a strong link and they will re-test every 5 years and see if it has been identified yet they learn of new ones all the time.  I have had double mastectomy cancer side and preventative other side and overies removes. I have a twin sister she has had double mastectomy as we have same DNA and my younger sister of 4 years has had preventative double mastectomy. They will look into overies but once they are 40.  ... View more

I am a bit older. Diagnosed at 37 April 2007) had chemo, mastectomy, Rads, hysterectomy and overies removed and finally 5 weeks ago preventative mastectomy on other side and Diep reconstruction on both sides.  I was originally put on Tamoxafen and was on this relatively symptom free for a year. I did have some hot flushes but not loads. I was put on an antidepressant and this helped with the few hot flushes that I hardly noticed them.  Then I had my overies out and because I was now post menopause I switched and started taking Anastrozole and omg it was not pleasant my hip started hurting and I was stiff all over it was getting worse so after six months my oncologist said she was putting me back on tamoxafen.  So it hasn’t been 5 years but I can say it’s tolerable and actually better than other options. I wish you well and hope you are one of the lucky ones who do not overly suffer when you start taking it. Xx   ... View more

Hi Evie, thank you for your reply.  I agree quality of life cannot be ignored the last 2 years have been awful really being diagnosed, chemo, radiotherapy, breast surgery, lymphnodes, hysterectomy it has been one thing after the other the only part of my treatment I found tolerable was the Tamoxafen and after the horror stories I had read before starting this pleasing so swapping to the AI was a shock and having this hip pain constantly reminding me bothering me at work and stopping me doing fun things at weekends just as I was starting to feel free from all the dreaded C treatments.  I am a big worrier and reoccurrence does keep me awake at night but I do believe the hip and heaviness would send me into a depression. I am giving the tamoxafen a go I just hope I can shake my paranoia over it not working so well. Bone health is a big plus I am at high risk of poor bones just from having overies our before age 40 so knowing tamoxafen is kinder on bones is a good thing. X    ... View more

Hi, I was on tamoxafen for almost a year with minimal SE’s I had some hot flushes but not any worse than the chemo had given me but I am on an antidepressant that is known for helping with hot flushes. I then had my overies removed 10 months ago and because I was now post-menopausal I was switched on to Anastrozole since then I have suffered with a terrible hip pain and feel stiff and old (I am 39 years old)  i saw my oncologist today and she has taken me off the Anastrazole and putting me back on Tamoxafen. She said that quality of life is important and on tamoxafen I was more active and keeping weight down and exercise can also help prevent reoccurrence so if I have a healthier lifestyle and feel better on tamoxafen then that is better. She said Anastrazole makes a person feel old. I also have start of osteoporosis and because I. Now have no overies this can get worse. Tamoxafen is kinder on bones.  ... View more

Hi, I’ve not had this yet as I’ve only just had my Diep (1 week ago) and hysterectomy plus overies 10 months ago. But from what I understand and this isn’t a lot tbf but I think they take fat from thighs????  I am wearing an abdominal binder now after my Diep that is supposed to support lower back while not standing straight.  I think it would be a shame if you didn’t have the final tweets after you have gone through so much but perhaps not just yet. If you turn down the date would they still offer again in maybe six months time?  ... View more

Omg my BMI was 29 so close!! I’m provisionally booked in for the DIEP on 4th July !!!!!!  ... View more

Hi May 17 Starters hope your all doing well. Thought I’d say a quick hi 👋 can’t believe it’s been two years we all started this thread nervous and worried about what was ahead.  Mom doing alright I have my preop-op on Tuesday for my Diep surgery so all being well (my bmi is at 30 now so could be a problem?) but fingers crossed they will still do it. I hope then I’ll have it sometime over the next 2-4 weeks.  Take care - love 2 you all xxxx ... View more

Hope eveyone has a good Christmas. And Happy New Year xxxxxxxxxxxxxx 2019 here we come. ... View more

Hello Lilly, thank you for replying. My hysterectomy and overy surgery was 11 weeks ago now and physically healed very quick I was back at work after about 3 weeks even though I had a six week sick note. My sleep has never been worse I’ve never been a great sleeper but do wonder at the moment If I ever sleep longer than an hour at a time. I feel so heavy eyes at 8:30pm can’t keep eyes open end up nodding off then wake up 10pm feeling like it should be morning and can’t sleep all night. I’ve tried forcing myself through the 8:30 thing stay up later but it’s hard. The hot flushes I think are better than a lot of people have so I can’t complain but they are now starting to get s but more frequent is it possible I have delayed symptoms can they take a couple of months to fully surface? My mood is very low and I’m struggling with concentration and short term memory but again could this just be lack of sleep?? My Dexa scan results shockingly showed early osteoporosis 2.5 on my hip and spine so I’m taking a weeekky tablet for bone strength thankfully this doesn’t cause me pain yet I was shocked already to have this i must have been heading for it prior overies coming out?? I’m thinking I may ask my gp for amatrptaline also but worry I’ll feel groggy or up late for work in the mornings. Oh and weight just creeps up and up. My surgery was also preventative safe guarding from overian in future and bring eastrogen levels down for bc reoccurrence. I get very snappy and short tempered with my boss I hate myself for it. ... View more

Thanks Mai. Is this IGF carbs from food? ... View more

Tatyana, that’s so encouraging so maybe I can reverse this bone thing? Yes I’ve been reading that it’s so important that you take on an empty stomach. Oh my!!! Early morning Emma without that 1st cup of coffee ☕ ️ Watch our nicky, postman or any other human that may cross me on this morning each week!!!!!!!! Hahaha I’ll take it then jump in the showers hopefully by the time I’m out and dry the 30 mins will be almost up!! ... View more

Is like some custom insoles. Don’t think anywhere on Milton Keynes does them???? ... View more

Alendeonic acid 70mg. One per week on empty stomach before eating or drinking first thing in the morning and then you must stay upright for half an hour so ot doesn’t agitate your food pipes ... View more

Jay do you have groupon app on your phone. They have special heel pads and socks on offer. We have just ordered them. I had a dexa scan a few weeks back it was supposedly to see how my bones are now as a starting point so they can monitor going forward any deteriation going forward because of the early menapause from having overies out and not being able 2 take HRT It was a shock to find I already have it. I had an email from my gp saying a prescription for bone strengthening weekly pill has been sent to pharmacy for me to pick up. I can’t take them though until my troubled tooth comes out at the end of the month. (I think the medication can weeken your jaw and it. An break when having a tooth out) The pill they are giving me is called something acid I’ll quickly check and post the name in a sec after googling I think it can help prevent spread of cancer on bones or it might be used once it has?? ... View more

Oh no I’ve now got osteoporosis!!!!! ... View more