Breast Cancer Now Forum

Please arm yourself! Go on balance-menopause.com  Click on Explore the Menopause library , scroll down below the search box to Subject box. In that list click on Genitourinary Syndrome of the Menopause ( GSM)  You will see a box to click on for the booklet Position Statement for Management of GSM. Print this to take with you .    Good luck , don’t take No for an answer. Remember the warning on the GPs screen will come uo saying there is a BrCa risk with this product. This is out of date and factually incorrect. It says this also on the booklet in the section at the top of Page 6 on prescribing info  Best wishes. Love this sisterhood. Thinking of you x ... View more

hello Becko, sorry to hear you are having a tough time. Don’t forget that topical Oestrogel pessaries (Vagifem) are safe even for hormone receptive BC patients. I’d recommend getting info on the ‘Balance App’ The data sheet the GP will have on their screen is out-of -date. There is in fact no risk if used as a topical pessary. This should be a massive help. Good luck. You may need to advocate strongly to get this. Liz O’Riordan also has info for specific help on her Instagram page.  ... View more

Hello LittleGorton, sorry to hear you are having problems. Have a look on Menoupausedoctor.co.Uk Look in the menu for Resources, then the Leaflet Menopause and Cancer. read on down, Page 9 is relevant   You can safely use Oestrogen pessaries (Vagifem)  even if you have had hormone receptive BR Cancer. The oestrogen only acts locally. The leaflet which is inside the packaging is out of date and says not to be used for Br Ca patients but it is completely safe to use. But your GP may/will be reluctant to prescribe because warnings flash up on their screen for drugs. You may need to fight for this drug. Good luck     Re lubricants the Brand ‘Yes’ is supposed to be brilliant stuff according to a Tamoxifen buddy. Their website is   YesYesYes.org     There are a couple of options.  All organic and non-irritant.  if you are on Instagram, Helen Addis @thetittygritty  talks to Breast Surgeon and Cancer advocate Liz O’Riordan @oriordanliz They have recorded the most amazing Live chat ( Aug31 2020) about Sex, Libido and all things cancer related . Essential watch. She talks about many options to help us. Highly recommend. I don’t have the dryness problems but need to wee often  it’s a real nuisance and I’m trying the pessaries to help with this.  Hope this helps x        ... View more

Hello Rabbit.  The only thing I think could help with some of your intimate issues  is to get Estradiol pessaries on prescription. Yes it’s Oestrogen but is not absorbed systemically. My understanding is that it’s better to address the problems rather than let skin become really dry and sore.  Did a huge amount of reading around this. Lot of info from Dr Louise Newson Menopause Clinic website for women struggling with low hormones. Specific Resources and info for women with hormone receptive Br Ca as we are more limited in what we take. Some of the Instagram Live videos are worth a listen about this.  Saying that, my GP was reluctant to prescribe even though the evidence base says no risk for this topical application.    I’m with you in feeling the aches are limiting my exercise but trying to keep going. I understand weight bearing exercise is really important to protect our bones as we age. Doing some teeny tiny weights which I quite enjoy. I’m struggling to get out running. Maybe more of a mental thing but my limbs feel so heavy. Again I’m sure it helps when I eventually venture out. Just need to be better motivated.  Beat wishes, S    ... View more

Hello Apricot, thank you for info re different Tamoxifen brands. I started Reblochem in July, latest script was Tillomed, taken for about a month.  Can I ask - have you noticed any improvement or worsening of  joint paint with any particular manufacturer? I’m so stiff, horrid achey mainly legs, arms and sometimes major leg cramps at night. GP didn’t have any suggestions.  I’m struggling on this drug but scared to come off it. Feel so aged. Thanks,  S  ... View more

Hi, I’m new to this forum. Aged 49 and feeling perimenopausal,  I was reading all about the benefits of HRt But then was diagnosed Invasive BrCa in March. I’m ER+ so can’t have HRT. However I have read that 70% of women can get Vaginal atrophy when oestrogen is low. Plus risk of UTIs. Have looked into this when starting Tamoxifen. My info comes from The menopause doctor ( Newson Clinic). Their advice is that topical vaginal oestrogen is safe in ER+ve women as only locally absorbed. Asked my GP and she was not keen but agreed to prescribe it. I’d do your own research. There’s resources on their website free to use. They also run teaching for GPs as there is little or no training in med school re menopause/ hormone deficiency in women. After all that is what Tamoxifen is doing to hormone receptive women.   Best wishes,  SAA ... View more

Hi Mx and thank you for the advice. I finished the ‘Fast’ 5 sessions Radiotherapy a month ago. I too really loathe the smudge of blue ink on my chest. It’s visible easily with most tops, a constant reminder. It looks nothing like a mole or freckle and I really want it removed. I phoned the nearest NHS hospital skin clinic which does tattoo removal. The senior nurse I spoke to wanted a written statement that the marks would not be needed again. She also said it was risky to have the mark removed now as the dye molecules are actually metabolised in the liver and there is a risk of an allergic reaction If done too soon. She said I could get in touch in 6 months. A bit frustrating but they also do scar revision so I’m thinking they can possibly improve the dark edges of my WLE scar where it is bumpy in places.  I need to look into the picosure laser you mentioned too if that is supposed to be good for blue colour removal. To be honest I’d be keen to get it removed sooner rather than later.  Best wishes and please update us on how you get on.   SAA     ... View more

Hello Claudia, hope you’re doing ok today.  Have you heard of ‘Life Kitchen Cookery’? Really lovely guy set up that charity. They have recipes specifically for pts going through Chemo with altered taste. Apparently all to do with umami flavours? (Found them on an episode ofYou,Me,BigC podcast). Best wishes,  S ... View more

Hi Jo,  So sorry to hear you need the 2nd surgery. I really feel for you. I had the same with about a month between surgeries (May, June) as my tumour was at the edge of the path sample. It felt like a backwards step to me at first but the best & brilliant news is your nodes are clear.  So I tried to think of it as a really rubbish side-step having already climbed a mountain and made awesome progress. My understanding when they go back to do a ‘shave’ is that it is a tiny amount and if it is DCIS that doesn’t increase calculated tumour size or make it more likely to need chemo.  Like you I was offered mastectomy at that stage but also offered another WLE. And a definite mastectomy if the margin couldn’t be cleared a second time. The surgeon said I could change my mind at a later date if I couldn’t live with having breast preserving surgery and if I was very concerned with recurrence. My breast unit only does the implant reconstruction without other options ( they told me that there are different options available at larger centres) Such an individual decision and I’m aware how one can’t always self-check for Lobular BC.  At this point I needed to trust the multi-disciplinary team and decided that they wouldn’t have offered the 2nd WLE if it didn’t have a good outcome.  They offered the OncoDx Test but refused to do it until after the 2nd path report was in.  I didn’t know what the second surgery would involve. The surgery was shorter in duration and at least I knew the hospital set-up. I found physical recovery was easier as they didn’t touch the armpit so I could keep better mobile. Mentally I found it much tougher (am thinking of that 3rd picture in the cartoon!) and I wasn’t as physically active ready for the second surgery, totally my fault.  I made a massive effort in the small window between surgeries and self-isolating to catch up with my closest people (in the garden, at a distance) but clearly was very cautious as the last thing I wanted was any delay due to Covid.  Again there was no firm decision about the benefit of chemo throughout all of this. It felt to me that my whole life was on hold and I had a lot of anxieties about expectations to return to work. I sought counselling at this point which has helped me stop darker ‘What if’ thoughts but also has let me go with my feelings when it feels right. (I used Breast Cancer Haven for counselling, who do sessions by Zoom). I honestly think with little steps and support, you will get through anything.  My understanding is that in NICE guidelines for follow-up of Lobular disease there is a recommendation for annual MRI (in addition to mammograms) which should be reassuring.  My surgeon has not agreed to this yet so if it is not available next year then I will ask for a second opinion referral. The OncoDx score came back low-ish so they didn’t offer chemo. The adjuvant treatment is our future protection so I’m working hard on the half-full. Started Tamoxifen and RadioT starts this week.   Sending best wishes and thinking of you x S           ... View more

Hi, I’m new to the forum. Reading your thread and thinking of all the hideous waiting and results. Isn’t that the toughest thing?  Re being without your partner for appointments and results, do you FaceTime or Speaker-phone them in? I was diagnosed very early in lockdown and it was never suggested by my GP or Br Ca Unit. A medic friend ( who works at a different hospital) suggested it as she has done this for years and said she can’t see why every clinician wouldn’t want their patient to be best informed, be able to retain information and be comforted.  So I have hubby ready in the carpark or at his work &  dial just as I go into the appointment.  Prop the phone on the desk. He takes notes and goes through questions I had incase any weren’t covered. He sometimes asked for clarification of a point. My surgeon is fine with this but I get the feeling I’m the only patient she has who does this.  I don’t have him ‘on’ when chatting afterwards to the Br Care nurse, but it was a game changer for the consultant appointments.   Maybe other units already do this? I just haven’t read anywhere about it being used.  Best wishes to you,  S.  ... View more

Hi Tricia,  Also diagnosed during Covid. I agree 100% Hideous getting diagnosis and appointments on your own. Have you thought about using FaceTime so a friend/ partner/ relative is ‘with you’ during your appointments? Or just your phone on speaker? It wasn’t given as an option to me by the GP or anyone in my Br Ca Unit but a medic friend ( who is an Oncologist at a different hospital) says she has always used it to allow relatives and friends to support the patient. So now I have my partner ready and I dial in as I get called in to the appointment. Prop up the phone so he can see the clinician. He takes notes and checks that we have covered any Qus I might have. It’s been a huge help as there is no way I could have retained the information.  I read this thread as also have Lobular Br Ca. 2 surgeries for WLE, starting shortened 5fractions RadioT next week. Almost every step has been delayed and I really empathise with the uncertainty of waiting. Isn’t that the hardest thing? My understanding is that Lobular disease is slow growing so the delays are not significant to the outcome.  Still trying to get my head around it as I think the powerless feeling of this disease isn’t helped by having disease which you can’t self-check? Would recommend counselling sessions, early days but that is helping me to take one step at a time, feel some sense of control and understand that it is normal to feel changed.  There have been some beautiful rainbows in this storm that is Breast Cancer.  So many generous, compassionate strong women sharing and supporting each each other. Thank you & Best wishes,  S       ... View more