Breast Cancer Now Forum

Hi, thanks for posting, I had almost forgotten that I’d posted this! I haven’t pursued the MRI scan request as yet, as covid/lockdowns have somewhat restricted so much NHS wise that I didn’t feel I could ask again. Yesterday I had my 3 year mammogram, so I await the results - always a nervous time. But I had a mastectomy on the breast that had lobular cancer, and it was ductal cancer in my now remaining breast. The consultant was of the opinion that, as I had not had lobular cancer in that breast, an MRI was unnecessary. But I shall certainly be pursuing that option at the 5 year stage before they discharge me. And I will go for the private option if they refuse. I would still be interested to hear from anyone else who has had lobular cancer, as to whether they have been offered an MRI? ... View more

Hi Sue from another Sue i went through my second occurrence of breast cancer in 2019, both breasts, one lymph node affected on one side, had a mastectomy on recurred side, lumpectomy other plus radiotherapy. I didn’t find the 15 sessions of that too bad, had it also in 2008. I was on tamoxifen in 2008 but gave it up after 2 years, with agreement of consultant, due to continuous post menopausal bleeding. This time both cancers were very strongly oestrogen receptors, and I was advised to take letrozole. I was reluctant after my experience with tamoxifen, but I started on it. I understand that joint pain is one of the main side effects….and guess what? I’d not been aware of having osteoarthritis before, but after about 3 months on letrozole, I started to get a lot of knee pain. X-rays showed bone on bone in 2 places, and I eventually had knee replacement in February last year. Then my hip became very painful, and I ended up with a hip replacement in June last year. I know the letrozole does not cause osteoarthritis, but if you already have it, it can certainly aggravate it. I spoke to the consultant and thought about it carefully, statistically wise it gave me a 6% advantage. But life was so miserable being in such pain with the knee and hip, that I made the decision to stop the letrozole. I can’t say with any certainty that it was causing my pain, but I’m not a person who lives in great fear of breast cancer. The pain of osteoarthritis was to me far worse than going through bc treatment. I’m 69 and would rather have 5 good years than 10 in pain - quality not quantity. Everyone is different and I would never advise anyone not to take the expert’s advice, but hopefully my thoughts might help anyone to consider what is best for them. I feel fit and healthy and am enjoying life at the moment but none of us know what is found the corner. Sue ... View more

Hello Rose, long time since I logged on and not sure if you are still active on here. But to any ladies still following this thread I thought I’d do an update. I had my knee replacement in February and have recovered really well, but my hip went from bad to worse, and to cut a long story short, I am having a hip replacement on 26th June. Rose, you asked me to let you know what I decided about tamoxifen. Well, having been off all hormone therapy for 4 months, I am still very reluctant to return to it. I will see if my hip solves all my joint problems and consider again. But having had nothing but pain in my joints since shortly after starting letrozole towards the end of 2019, I really don’t want to risk causing myself further issues on that score. I just long to feel I can be active again, and enjoy a walk. I emphasise again, this is MY choice and is not right for everyone. Quality of life is just more important to me than quantity, and I can live with the risk of getting breast cancer again, as long as I am not living my life in pain, as I have now for 18 months. I would be I interested to know if anyone else has made any decisions on their hormone therapy? Sue ... View more

Greetings to Rose and Tili and thank you for your posts. Of course it’s ok to join the conversation, that’s what it’s all about, mutual encouragement and support and sharing experiences. I would say that probably the only people who write on threads like this are those who have experienced side effects with hormone therapy, there must be thousands who tolerate it well, so I reiterate, I don’t want to put anyone off taking what is recommended. But for me, the fear of breast cancer returning is far less than the fear of living in this pain which I have for over a year.  I actually felt quite fit and well whilst going through two lots of surgery in 2019, lumpectomy and mastectomy. I was even swimming in the sea within 2 weeks of my mastectomy, and was walking the Cornish Coastal path shortly after I complete radiotherapy, and building up my health and strength. So I am doing whatever I can to get through these pains. If after I’ve recovered from my knee replacement, and sorted my hip out. I can get back to some sort of active life, as before. I will personally be very reluctant to go back on any sort of hormone therapy. For now I can only live a day at a time and make decisions as and when it is right for me. If my Maths is correct, and I have a 66% chance of survival without any further treatment, but would be 87% without the breast cancer factor, then I suppose I have a 21% chance of dying from bc in the next 10 years (well  8 1/2 now) - which means if have a 79% of NOT dying from breast cancer, and I’ll be 76 by then anyway!  I wish all of you all very best and trust you’ll make the right decisions for you. Hugs all round. Sue ... View more

Thanks Moira and (virtual) hugs to you too. As I said, I would never encourage anyone to stop the hormone therapy, but sharing experiences can help one to come to their own decision. On Predict I have a 66% chance of survival for 10 years without hormone therapy, or 72% with (at 67 my survival chances would be about 87% without the breast cancer factor). Chemotherapy would have brought that up to 75% but I declined that extra 3% as I didn’t feel it was worth all the effects of sickness and hair loss over 6 month period, and with COVID now, I am even more pleased I did. I also declined biophosphonates as they couldn’t offer me the intravenous type, only daily tablets which involved too much hassle first thing every morning (no first thing cuppa, sitting upright for an hour....that’s not life!). So you can see I’m good at refusing things!  I had 11 great years after the first diagnosis and stopping tamoxifen, including welcoming 4 grandchildren into the world and enjoying their company and being involved in childcare regularly. I may have avoided a recurrence if I’d stuck with the hormone treatment, but at what cost? I’m fortunate enough to have a generally laid back and positive outlook on life, so I will accept the risks and the consequences. But I will think again once I’ve sorted my awful joints out. I was offered a change to tamoxifen, so I may try that. ... View more

I’ve not logged on for a while, but just found this thread. Had a small lobular cancer right breast in 2008, when I was 54. Lumpectomy, radiotherapy and tamoxifen. All was well for 2 years, when I started persistent post menopausal bleeding. Investigations pointed to tamoxifen, so with the consultant’s agreement, I stopped it. 2019, bilateral cancer, 46mm lobular in right breast, 26mm ductal in left, one lymph node affected. Had mastectomy on recurrent side, lumpectomy followed by radiotherapy to breast and lymph nodes on the other side. I was challenged more than once by medics as to why I had stopped tamoxifen. But I couldn’t just have carried on bleeding like that! I started letrozole in October 2019 and all seemed well. I’ve always had twinges of pain in left knee since having an accident when I was 18. By January 2020, the pain was severe. Osteoarthritis was diagnosed and I am having a knee replacement next week. By August 2020 I was also having severe pain in my right hip, which had never been a problem. Osteoarthritis was also diagnosed in that, and I am in the process of referrals.  In November it dawned on me that these problems had only risen since starting letrozole. I had a telephone appointment with oncologist and agreed to have a break to see if it made a difference. By beginning of January I couldn’t in all honesty say I’d noticed much difference, so I restarted it. Spoke to oncologist a week ago and she was pleased I’d restarted and said I should stay on it for 10 years. But now I’ve realised the pain in my hip has got much worse since restarting letrozole. Statistically, from the Predict tool, letrozole offers me a 6% benefit. But like others of you, I can’t face the thought of living like this, with constant pain, for another 9 years into my late 70s. I used to enjoy 5-6 mile walks, now I can barely manage 1 mile, and that’s with sticks and strong painkillers. I wake up at night every time I turn over. So yesterday I stopped it again. I’m going to get through my knee surgery, assess my hip (which may improve once my knee is properly aligned) and think again about the risk/benefit balance. Incidentally my blood pressure was high last week. Already that has come down, and I see high BP can also be a side effect of letrozole. But it’s too early to say, and I was a bit anxious last week (which is not normally me). I wouldn’t want to discourage anyone from taking it, but just to share my experience. After having a recurrence, it is a double whammy when thinking about stopping it. ... View more

I’m really pleased my response has helped, it’s why I posted! I was unable to have radiotherapy on the mastectomy side, as I’d had it previously in 2008, but I did have 15 sessions for the other side, where I had a lumpectomy. It is tiring, but I was able to use the bus every day to get there (centre of city, 15 miles from home, parking non existent). It left me itchy and sore for a couple of weeks, but that soon eased. I did not need chemo. I know the first time you are diagnosed it seems as though you’re the only person who’s ever had bc. But I was much more confident the next time, and I feel really fit now, and it makes you aware of how precious life is and I just value my home and my family so much more.  One thing I am looking into, but lockdown has delayed everything, is asking for an MRI scan at some point on my remaining breast, as lobular cancer is not easily detectable on mammograms or ultrasound. My consultant is happy to see me and discuss it.   ... View more

Hi Stephie, nobody can ever guarantee you won’t get a recurrence. I had lobular cancer in 2008, and then unfortunately a recurrence last year and I had a mastectomy. There was no spread to my lymph nodes that side (I also had ductal cancer the other side with one lymph node affected, but that was just unfortunate). I have recovered really well from my mastectomy and my prosthesis is comfortable and nobody would know. I was even swimming in the sea within 3 weeks of my mastectomy last July! I am 67, and am now on letrozole for the foreseeable future, and I have had no problem with that at all. As far as anyone can possibly know, I am now cancer free and getting on with and enjoying life. Just want to reassure you that even a recurrence is not the end of the world, but hopefully that won’t happen to you. Being positive is really a good way to go! Trust all goes well for you. X ... View more

Thank you Lucky1 for your very helpful reply. Interestingly I am also in the South West, and was at a major breast care centre. I don’t like (and it’s probably against the guidelines) to name it, but I do wonder if we are at the same one! The consultant offered to see me and go over my concerns, and to make an appointment with him. But that was immediately before the current lockdown, so I am not doing anything about that yet, but I think I will when this is over. I do also have this query in my mind, that as I had lobular cancer in 2008, why when I had a recurrence, did they not do an MRI which might have detected it before I went down the lumpectomy route. And why wasn’t I offered any MRI scans in the 10 year follow up. It wasn’t until this time that I realised my previous cancer had been lobular, I had always assumed it was ductal. I didn’t know so much or ask so many questions in 2008.  At 66 years old, I decided against a reconstruction, though the consultant would have done one at the same time as the mastectomy. I didn’t want major surgery and I recovered so well, I was even swimming at less than 3 weeks. My prosthesis is comfortable, and a good match, and I have quite large boobs. I couldn’t have radiotherapy that side, as I had had it in 2008. But I had radiotherapy on the other side. If the consultant will not consent to MRI, I think I will pay to have one privately at some point, and certainly by the 5 year stage. As I’ve now had cancer twice in one breast, and once in the other, I must be at fairly high risk. ... View more

Hi all I saw the oncologist today, 6 weeks after completing radiotherapy, and feeling fit and life back to ‘normal’. She has prescribed me Ibandronic acid as a biophosphonate. It’s not one of the two mentioned on this site, and she did mumble a reason for that. I know she said they did not have the capacity to give me the 6 monthly intravenous option, and then she said that this one was ‘off grid’ or something like that. But I cannot face the thought of taking a daily tablet on an empty stomach, and keeping upright for an hour. One of the biggest pleasures in being retired is having at least one, and usually two, cups of tea in bed first thing, especially when my husband gets it! And she also said that it only Increased my life expectancy for the next 10 years by 3%. It was on a 3% basis that I declined chemo. Researching ibandronic acid, it seems to indicate that it is usually given for women whose cancer has already spread to the bones, which mine as far as can be known, has not. Also my DEXA scan showed no osteoporosis, just osteopenia. So I am certainly not inclined to take it, she didn’t push me to it, but I did feel she thought I should be on it. I’ve had no side effects at all after 3 months on letrozole. Anyone any thoughts? ... View more

Thanks Joemic, I’ve just responded to your post in radiotherapy too! Thanks everyone else too for your responses. I see that all of you who’ve responded so far have been through chemo. I was offered chemo, but declined, as statistically there was only a 3% chance it would be of any benefit for me.....as I said in my post, I’ve got to know the benefits outweigh the risks. I finished radiotherapy yesterday, and I don’t see the onc again until 14th November, so I’ve got a few weeks to decide on biophosphonates, and also to know the results of my bone density scan, as to how strong my bones are currently. As I’m a second time around person (11 years ago, right breast, had mastectomy this time for right, and lumpectomy left) and this time it was bilateral, I guess I must be high risk of a recurrence, so anything which lowers that risk, I know I must seriously consider. ... View more

Hi Joemic and others. Yes, I had my last session yesterday and was called in early for the first time! There’s a bell you ring on the way out to signify you’ve finished your treatment, and everyone in the waiting room claps and cheers! In fact I’ve found the atmosphere in the waiting area so full of life and positive. I guess it’s because we’re all in the same boat and can cheer each other on. I had my final review. I do have quite an itchy rash, especially around my collar bone, which will get worse until it gets better. She said expect a couple of weeks before it improves. I’m using aloe Vera, which I find quite good. But if it’s bad, I can get a hydrocortisone cream, though she cautioned that it can thin the skin. She also suggested antihistamine tablets if the itching drives me mad. So now it’s just a follow up appointment in oncology in mid November, and I believe a final ‘holistic’ one to one at the breast care centre to go over any concerns. Then it’s back to annual mammograms. Hopefully the end of this 6 month journey - it’s my second time around, after 11 years. Best wishes to you all on this journey. ... View more

Hi Coconutbean Hopefully now, as it’s a while since your original post, you’ve been able to go swimming? I had double lumpectomies and SNBs in June and was advised not to go swimming until well healed. Unfortunately I developed a haematoma on one side, which eventually caused my wound to leak. I had to return for surgery, a mastectomy one side, on 24th July. That cleared the haematoma, and my breast care nurse told me I could go swimming as soon as I’d healed. So I was back swimming, both in the sea and pool, within 2 weeks of that surgery, with my special swim prosthesis and costume. I am fortunate to have a neighbour with an indoor pool she lets me use, which has very little chlorine, and few people so less risk of germs. But I have certainly found it excellent exercise to get my movements back. I love swimming in the sea, and have enjoyed that several times since my surgery.  ... View more

Hi all, I’m now 12 down, just 3 to go. I’m having my lymph nodes zapped too, and that’s the only area now that has a pink rash and is a bit itchy. That’s the area below my collar bone. The breast itself is fine. I’ve been using aveeno cream morning and night. I can’t say I feel particularly exhausted. I’m travelling on the bus, which I actually find quite relaxing, and it’s much easier and quicker than driving into the city centre and trying to find somewhere to park. I take a bottle of water, and often a currant bun.....I have occasionally fallen into the temptation of buying a bar of chocolate but try not to! I am dead tired by 9pm, but I think a lot of that is all the travelling, 20 mins appointment can take me out the house for 5 hours with the waiting around, and sometimes have been in an hour late. But I like to try and chat to others in the waiting room, and have met some interesting and friendly people, all with something in common and at different stages of treatment. That helps to pass the time. Best wishes to you all. ... View more

Hi, I’m currently 8 sessions into 15 of radiotherapy for my left breast, 26mm ductal cancer with the sentinel node affected, but not the second out of the two they removed. My ultrasound suggested my nodes were clear. I wasn’t given the option of full node clearance. I was told that because of the involvement of the sentinel node that radiotherapy would be extended to cover my lymph nodes. I do believe, though not sure, that the risk of lymphodeoma is slightly lower with radiotherapy than with full clearance. So that is what I am undergoing now. What I didn’t realise until I had my first review after 5 sessions, was exactly where they direct the radiotherapy for the lymph nodes. I somehow thought it was under the arm around the area if the scar from the node testing. But I’m told it’s actually just below the collar bone, and I was advised the cream the back area as far as I could reach, as they direct beams from behind. I certainly seem to spend at least 20 mins in my session, with the machines moving around and blasting from several different directions. So far I am pleased to say that I have not noticed much effect, though just a glimmer of a faint rash appearing. The tiredness is more to do with all the travelling involved I think. Hope that helps. ... View more

Hi Tinaan and welcome. I know how frustrating it is, the waiting game and it’s an unfortunate part of the process. I’m ‘experienced’ in that I went all through this 11 years ago. But this time it seems there are more and more people to treat and longer to wait. That’s been my experience all the way through with waits for scans, wait for surgery etc. I had lumpectomies on both breasts on 21 June but unfortunately had to go back for a mastectomy on 24 July, so only a day after your surgery. It is the remaining left side which is now being treated with radiotherapy, but the mastectomy delayed it all because of waiting to heal on the right.  So I am literally sitting on the bus now on my way in to my 3rd session. I started on Wednesday, which was very nearly 12 weeks after the lumpectomy and exactly 7 after my mastectomy. And even then I harassed them a bit to get it brought forward. I don’t like pestering as I’m sure there are always more needy cases than mine, but I’ve learnt that it does pay as they did manage to bring mine forward by a week. The guidelines seem to be between 6 and 12 weeks after your lumpectomy so hopefully you’ll hear soon. Meanwhile just enjoy this lovely weather while you still can...I’m spending half of every day travelling and being treated! I think it’s a cruel joke that while I’m flat on my back with my arms held up behind me and the machine whirring and clicking, they have a picture on the ceiling of blue skies and palm trees! Just remember this is hopefully the final stage. I keep checking online for holidays in November with real sun and palm trees! ... View more

I finally started my 15 sessions yesterday. I left home at 9.30am and didn’t get back until 1.30pm, so it certainly takes up a large chunk of the day. I will be leaving at 1.30pm today for a 3pm appointment, yesterday there was a 30 mins delay. After an initial mammogram in mid April, followed eventually by double lumpectomies late June, and then on again for a single mastectomy in late July, I finally feel I’ve reached the final stage and can hopefully move on - it will be 6 months by the time I’ve finished.   As for going bra less, it’s not really an option for me, as I’m wearing a prosthesis on the non radiotherapy side and need the specialist bra I’ve got to hold it! And as I’m a 38DD, I wouldn’t want to startle anyone on the bus by not wearing it! ... View more