Breast Cancer Now Forum

Hi Jaynemc Thanks for resurrecting this thread and lovely to hear from you. No changes for me. I am coming up for my 5 year and final review in the summer so it will be interesting to hear what my consultant says in respect of hormone treatment. My understanding is that tamoxifen is suitable for pre and post menopausal women. I am not keen to take an alternative AI as my Mum has very bad bone issues. The only other thing I stumbled on is that the "Predict" website has been updated with the findings from staying on Tamoxifen for a further 5 years (total of 10 years). Interestingly, based on my personal details, it reports that there is zero benefit for staying on Tamoxifen for a further 5 years. I will update you when I see the consultant in August. Michele x ... View more

Hello @AnnieV  Thank you for your post and it is a question I was going to ask in a couple of months, as I will be due my 5 year (and final) check. Did you know that the tamoxifen results (ie you can see the benefits for staying on it for an additional 5 years) are on predict now? However, when I entered my details in predict it says there is "0% benefit" for staying on tamoxifen for an additional 5 years so I will discuss this at my surgical review. I am not really keen to switch to a different AI as there is a strong family history of osteoporosis and scoliosis. I would say that as you appear to no longer be under the care of your breast unit then ask your GP or maybe speak to the lovely nurses on here (number at top). I would be interested to hear what you are advised. Kind Regards. Michele x ... View more

Hello @Kibo I was diagnosed with BC in 2017 and was accepted onto the OPTIMA trial and like you managed to avoid having chemotherapy. I can maybe answer some of your queries. I was older than you at diagnosis and peri menopausal. Part of the protocol for the OPTIMA trial is they want all participants to have the same "hormonal status" so a condition of the trial is that if you were pre/peri menopausal then you would have to have zoladex injected monthly. I received no additional checks whilst on the trial. Just annual mammogram and surgical review. I took zoladex for three years together with tamoxifen. At the end of three years I asked both my GP and consultant if my menopause status could be tested and I was refused. You could ask your oncologist about changing to tamoxifen but the OPTIMA trial protocol will still insist (my understanding) that you have the zoladex injections. Let me know if I can answer any other questions. Michele x ... View more

Hello @Hadley207 You have been through a lot and don't have much time to make a decision  I was diagnosed in 2017 and had a lumpectomy with clear margins so haven't gone through what you have been through. I remember reading a post from a lady who went through four surgeries and thought this would be useful for you. I am not computer savvy but this is the subject heading if you put it in the search bar. Re: Close margins following second surgery I  also think your decision may depend on your breast size? How will three surgeries impact on the size/look of your breast  I was lucky that my incision scar is under my breast and I just have a bit of irregularity to the side. From "face on" you probably wouldn't know I have had surgery.  Also, is there plenty of "margin" to take? How close, for example, is the incision from the skin or chest wall? i would encourage you to speak to your Breast Cancer Nurse who maybe able to answer any questions you may have. Or try the nurses on here (number at top) i am the type of person who likes to do a lot of research before I can make an informed decision. I wish you well for your decision and surgery. Michele      ... View more

Hello. My circumstances are different to yours. I had breast cancer (right side) in 2017. Last month I felt a lump on the left side. It was swollen and painful. I managed to see my consultant and she said it was a cyst, not suspicious, but she would put me forward for surgery to remove. So I just wanted to offer you my support and let you know you are not alone as I am on the  waiting list to have surgery too.  Michele x ... View more

Hello ladies. Just been seen by my consultant. She said I have a benign cyst, so not suspicious, but I will need surgery to have it removed. But at least I can breathe a sigh of relief. Michele x ... View more

Hi Ladies. I was pleased with my clear mammo result however I felt a lump this week under my left armpit (opposite side). I saw my GP and she didn't know what it is and offered to refer me under 2WW. I managed to speak to the breast unit at the hospital I am still under and they have brought my appointment with the surgeon forward (annual review) to Monday. So not long now until someone looks at it. Of course I am anxious. Michele X ... View more

Hi Blackcat. I thought I would share my experience if it's of any benefit to you. I was diagnosed with BC in 2017 and had lumpectomy, radiotherapy and I am on hormone treatment. About 6 months after my operation I noticed swelling in my arm (same side) and was referred to the lymphoedema clinic. They confirmed that I have lymphoedema in my fingers, hand, lower and upper arm, breast and back. My breast is very lumpy and firm with no obvious swelling in the breast but I can see swelling to the side/back. Unfortunately the only treatment I am given is a compression sleeve for my arm. I see that Jobst (USA) do JoVi pads that are inserts for your bra but cannot see a UK site that offers them. Maybe you can ask your Breast Cancer Nurse for a referral to the lymphoedema clinic as this is the only way for sure to see if you have lymphoedema. I am sure the specialist nurse would also be able to give you advice on compression bras (I would have to fund myself) if appropriate. Michele x ... View more

Hi @Cath9090. Thanks for your update. I think its good news that you can stay on Tamoxifen and good news that they are still keeping an eye on you. It seems you have had good advice from your oncologist. I was signed off from oncology after my operation and get seen by the surgical team yearly (except last year) and next year will be my last check. I hope you enjoy your break from work. It sounds like you need it. Michele x ... View more

@MrsHutt  I have sent you a private message. Michele x ... View more

Hi Cath/Delly I had trouble finding this post but thought I would give an update. So today I received a letter from the hospital. I put off all day from opening it but it was to tell me that my mammo was clear. Hurrah. I wish they would make their policies clear at the hospital as I can't be the only lady suffering from post mammogram nerves. Wishing you both a lovely Bank Holiday Weekend. Michele x ... View more

Hi Cathy My situation is similar to yours. I was diagnosed in 2017 and had positive nodes and was put on Tamoxifen (I was perimenopausal) and monthly zoladex injections for 3 years. There seems to be conflicting advice on how long someone should take zoladex I have heard 2, 3 or 5 years so I think you have done well to go 2.5 years. I haven't noticed any difference in side effects since stopping Zoladex (November 2020) apart from my hair seems to be a little thicker. My experience is that Tamoxifen is doable. Yes I get side effects (hot flushes, irritability, cramp etc) but I will persist with the medication for as long as I can. Sometimes changing brands can help with side effects.  As you have had a heavy period and feel dizzy I think you should contact your breast cancer nurse/team to see what they say? Regards Michele x   ... View more

Hello Cath Glad you have had your scans and that you were reassured by them although it sounds like you will have a change of hormone treatment. As you said Tamoxifen is "known" for its issues with the womb. It sounds like you are being well looked after by your team. Are you post menopausal? It sounds like you needed the breather from work and change of scenery. Delly, that was a good guess.......I am a surveyor Michele x   ... View more

Hi Delly/Cath I had my mammo only on Thursday just gone so I'm on edge thinking will I get a recall phone call/letter and then I only get to hear the actual result in October. Its just a bit nerve wracking. I was only aware of one of my lymphodema flare ups - I caught my finger in a step ladder - hazard of my job! The others were all unexplained. I have noticed tiny "paper cuts" on my skin and apply antiseptic cream to these and they usually settle down. I always have cream in my handbag! I have lymphodema in my bust, back, hand and fingers as well and would benefit from say a compression bra but I have been told I would have to pay for these items. Michele x ... View more

Hello Delly. Thank you for your message. Regarding my mammo they only get in touch if there is an issue. Otherwise results are at the surgical review. This is their policy at my hospital and I keep asking for quicker results but they won't budge. I have had lots of issues with my lymphodema arm. In the last 18 months I have had cellulitis twice, five courses of antibiotics and a surface thrombosis. I am under the care of a lymphodema nurse but they don't have any funding for preventative treatments/managing symptoms and the only help I get is two compression sleeves every 6 months. My rib pain was thoroughly investigated and all tests clear. They put the pain down to adhesions on my ribs from radiotherapy. Michele x ... View more

Hello Cath Sending you a virtual hug. I can totally understand your anger/concerns. I am four years since my diagnosis and have had scans for unexplained rib pain and thrombosis (in lymphoedema arm). My tests came through very quickly as they usually refer you under the "two week wait" rule. I hope your scan goes well.  I had my mammogram Thursday and I am upset that I won't get my results until I see the consultant in October. It seems an agonising long wait. Especially as last year, during pandemic, I didn't get to see the consultant and had my results in 2 weeks. In addition I have a relative who has been diagnosed with terminal cancer after only just being given her 5 year all clear so I can empathise with what you say about mammograms. I still have good days/bad days 4 years on and I live alone and am self employed so have the worries about work/money. I find having a drink can be relaxing and it sounds like you had a mixture of emotions on Thursday. So please don't be hard on yourself. Please take some time out to pamper yourself and have some "me" time. We have all had a lot to deal with in the last few years. I go to Yin Yoga once a week (I have had to have a little break due to illness) and I find this helps my Tamoxifen induced aches and pains and finds it helps to clear my mind and relax me. Or perhaps you could try counselling? We are all here for you and to support you. Michele x ... View more

Hi Meg. I thought I would tell you my experience. I was diagnosed with BC in 2017, 15mm, with two lymph nodes effected. I consented to chemo and was told about the Optima trial. I did a lot of research and looked at the results of the first phase. You are probably aware that it is a blind trial and half the participants get randomly tested so your outcome could still be to have chemo. I was selected to be tested and my result was no chemo required and I went straight to radiotherapy and hormone treatment. I was peri menopausal so I had to participate in having zoladex monthly too. I remember at the time talking to two other ladies who both decided against joining the trial. One wanted to "crack on" with chemo without any delay (the trial added about a two week delay). The other chose to have chemo as like you would worry about her decision if she didn't have it. I would be happy to answer any questions you might have. Michele X  ... View more

Hi Jacqu. I had similar recently with different medication and I found that the manufacturer's name was on the blister pack. Worth a look. Michele x ... View more

Hi Rhiann, You are a life saver. I managed to get Tamoxifen (Wockhardt brand) from my local Tesco pharmacy. This is why I love this forum! Thank you for your recommendation. Regards. Michele x ... View more