Breast Cancer Care Forum

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

Welcome to this thread crossbar, and please relax and don’t worry. Well done Leonie for reassuring you already, we’ve been comparing notes for a while. You may note that I went through all this before 11 years ago. Surgery is really no problem, are they testing your lymph nodes too? I had double lumpectomies and lymph node testing back in June. My surgery was late in the day, and unusually for me, I felt quite sick, so stayed overnight but was home by 8am the next morning. Make sure you do your exercises. Unfortunately I had to go back and have a mastectomy one side, but even that surgery was not too bad and I had the surgery at 11am, no sickness, and was home by 4pm.  I’ve had 11 good years since my original diagnosis, enjoyed welcoming 4 grandchildren into the world in that time. I intend to go on enjoying life to the full, I’ve just got 3 weeks of radiotherapy to go, and hopefully then I’m free again. Easy to say I know, but please try to relax. I worried a lot more the first time round than I have this time, because I learned that it was not the end of the world. Best wishes for Friday 13th. X   ... View more

I have just had my planning session with CT scan. But just to reassure everyone, this is my second time as I was treated for my right breast 11 years ago. This time I am having radiotherapy on the left side, and it will also cover my lymph nodes, as the sentinel node was affected. I did not suffer too much last time, and am not anticipating too many side effects this time, though I know I am likely to be sore. i think the fatigue is as much the emotional drain of all we’ve been through to get to this stage, and also the daily travelling. I plan to use the bus as long as I can, as there is hardly any parking and it’s in the centre of a big city. jewels46, please try and relax and not think too much about it. I’ve tried to have some fun myself whilst waiting, which has included a couple of mini vacations and some day trips, whilst there was still some summer left. I start next Wednesday, and I managed the 20 seconds breath hold quite easily in my setting up this morning.  I’ve been there before....honestly, it’s not too bad! ... View more

Hi Libby03 I’m pleased to report that I now have all my appointments, and they have managed to fit me in earlier than expected. I have my planning appointment next Tuesday, and then treatments start the following Wednesday 11th, go on until 1st October, with a final blast and review on 9th October. So I will be starting 2 days before the 12 weeks that I was told it should start. I had a really kind and helpful radiotherapist ring me, as I was originally down to see the doctor to sign consent etc on Thursday next week, and when she spotted that, she arranged for the doctor to see me next Tuesday at my appointment with her, so that I didn’t have to make the journey twice in one week. And she then brought forward my planned appointment by a week when I pleaded! Common sense and joined up thinking, a rare quality! It is a relief when you know where you are, and I know that I will be well able to join our family holiday together. Just hope the grandkids don’t wear me out! Beat wishes to all of us going through our radiotherapy in September, let’s keep our chins up! ... View more

Hi everyone, I’m also due for radiotherapy in September. I have bilateral breast cancer, and the right side was a recurrence after 11 years, so I had radiotherapy back then, 15 sessions and can honestly say I didn’t affect me too much. I can’t have radiotherapy again that side, and I initially opted for a double lumpectomy, as it was thought the recurrence was very small. But it turned out to be an invasive lobular cancer which had spread so I returned nearly 5 weeks later for a mastectomy.    I saw the oncologist on Monday and am now waiting for an appointment to get set up and then start, probably 15 sessions. They will go up into the armpit to cover the lymph nodes. What is concerning me is that I have been told several times that radiotherapy must start between 6 weeks and 12 weeks after surgery. The lumpectomy, with sentinel node involvement, was performed on my left side on 21 June. Oncology are telling me they are so busy and short staffed that there is no appointment for a month. They will try and fit me in with a cancellation, but I’m already 9 weeks down the line, the delay being my further surgery. And we have a big family holiday at the end of October which I’m determined not to miss. I think I’m going to ring and start hassling, though I am reluctant, as there are plenty of people worse off than me.   As for travelling, our oncology department is in the centre of a city with virtually no parking. I’m old enough to have my bus pass, so I intend to use that, and then 10 minutes walk from bus station. It’s about 40 minutes on the bus from where I live. Hope I can travel after 9am!   Has anyone else been told that they will have to wait because everything is fully booked? ... View more

Hi again Well my trip to the oncologist on Monday went much as expected. He did have a ‘discussion’ with me about chemotherapy and offered it to me as ‘standard’ treatment. But when I questioned it, it was basically along the lines of “we are offering something which will make you feel rotten, your hair will fall out, it will last 4 or 5 months, your immune system will be suppressed so you are open to any infections (think...4 grandchildren aged 5 to 8, always with snotty noses once school term starts in September)...and all this, with people with your particular cancer, 3 in 100 will have a better chance of not having a recurrence, but we cannot possibly tell if you will be one of those 300. And anyway, we will be keeping a careful eye on you for the next 10 years”. He almost seemed relieved when I declined the offer! So it’s radiotherapy, probably for 3 weeks, and he’s given me my first prescription of Letrazole (complete with warnings of menopausal symptoms, oh what joy!) I will be picking that up from the pharmacy shortly and then staring at it for a few days, plucking up the courage to start it. He also mentioned biophosphonates...I’d not heard of them before, so I had to research. He will send me for a dexa bone scan to check my bone density now. After finding the NHS brilliant in a crisis, in terms of my speedy diagnosis and surgery etc, now that I am in the follow up stage, the frustrations have started. I should have a group physio therapy session approx 5 weeks after surgery, and I did have one given me for 5 weeks after my lumpectomies, but couldn’t go as I was in for further surgery. My BCN assured me she would refer me for another appointment about 5 weeks ago. Nothing heard so chased it up last week....she hadn’t done the referral, so they pushed it through last week. Nothing heard, so chased it up with BCN, who said I needed to chase it up with physio appointments. 30 minutes on the phone with “your call is important to us....you are number 1 in the queue”, only to be told no record of referral. She went and saw the physios, who eventually found it on their system, but nobody had done anything with it. Reckon it will take another week before they can raise an appointment for me. I asked if as it was a group session, could they not just add me to the next group? Oh no, the system doesn’t work like that, far too easy, common sense doesn’t come into it. Fortunately I feel that I have got pretty good movement back.  Also radiotherapy is supposed to start within the window of 6 to 12 weeks after surgery, and as this is to do with my left side lumpectomy which was on 21 June, should start 13 September latest. But Oncology told me they are fully booked for a month. They are hoping to fit me in with cancellation, so I just sit and wait for my phone to ring and cannot make too many plans for anything. How soon will you get your radiotherapy? The predict tool gave me a 73% chance of being alive in 10 years without any further treatment at all, or 77% with radiotherapy and hormone therapy. That’s good enough for me! I did discover that my left side tumour was 26mm, not the 15mm they had measured from my scan. And the ‘tiny 8mm’ tumour on the right, was in fact 35mm! Sorry this is so long, hope you haven’t given up reading it, but it is quite therapeutic to get it all down and share it with someone in similar position. The short break was great, and I did swim in the sea twice, and managed to change reasonably subtly behind a towel. I’ve since been on Amazon and ordered a large beach changing robe! ... View more

Hi Leonie So pleased for you that you got on well at oncology and don’t need the chemo, that’s the type of result I am hoping for next Monday. The difference between us is that I am 66, so if they look at 10 year survival rates, I’m a bit further down the line to shuffling my mortal coil! Also I’m a 36DD!! Today hubbie and I are off for a couple of days in a hotel by the seaside. And I am taking my newly acquired swimsuit and swimming prosthesis as I love to swim in the sea.....my only concern is how to get changed on the beach without startling people as I whip lut my ‘softie’ from my bra and heave on my swimsuit with one boob already in it! Mind you, the weather doesn’t look as though it is going to play ball! Will let you know how I get on Monday. ... View more

Good morning Leonie, I think you and I have a similar sense of humour, which keeps us going throughout all this! I was interested that you had a full lymph node clearance after the sentinel node came back positive. My consultant never suggested that, he took 2 nodes out, and although the sentinel node was positive, the second one was not. But I am expecting the radiotherapy to be extended into my armpit to cover that. And I know I will have to take the hormone tablets, probably letrozole. I was on tamoxifen 11 years ago but stopped them after a couple of years due to side effects (bleeding from a place which I thought I’d finished with!). My consultant at the time said I only had a very slim chance of a recurrence .... ha ha!  Your experience sounds similar to mine 11 years ago, in that I was originally diagnosed with dcis, but when they did the WLE, they found an invasive tumour. But my lymph nodes were clear that time. As regards choices, I think they cover themselves by giving you ‘best’ advice - I was initially told that because I had a recurrence on the right side, that the ‘standard’ treatment was a mastectomy, but I had the choice on the new left side. I did some research and asked a few questions, and eventually my consultant was very happy to do a second lumpectomy on the right side. However, once again I drew the short straw, as the results came back with lobular cancer which had spread more into the tissue, so I had to go back for the mastectomy. But, I do not regret my initial choice - as the consultant said, if it had come back as the tiny 8mm tumour they were expecting, it would have been somewhat drastic. What I’m still struggling to come to terms with is that I had my final mammogram on the 10 year follow up in 2017, and all was clear. In 2018 I had my letter to say that I was off the programme and back on to 3 yearly routine mammograms. It so happened that the mobile unit was in my town this year and I was called in......and all this has come about from that. So in 2 years I’ve gone from ‘all clear’ to a mastectomy and a new cancer with lymph node involvement.  So the next ‘choice’ will be when we see our respective oncologists! I am quite happy to go along with the radiotherapy. But they will have to make out a very good case for chemotherapy for me to go along with that. I think it is purely because of the one lymph node involvement that it will even be discussed.  All the best to you....I hope ‘whatatit’ who initially started this thread is finding this helpful?   ... View more

Thanks Leonie, I think I have sent you a hug! I’m new to this too, but I just clicked the little orange circle which says hug! It sounds as though your journey is at a similar stage to mine, let’s compare notes after our oncology visits! ... View more

I was advised to wait 48 hours before showering, which I did. I made sure I washed my hair the morning of my surgery, as I can’t stand not having clean hair for more than 2 days. But the dressings were showerproof, and I managed to hook the drain on to the handle on the shower door. I am blessed with a very positive outlook on life! The wound area is beginning to feel a bit more sore now that the nerves are beginning to tingle and come back to life. And I do still have some fluid swishing about in the seroma, but am hoping not to have that drained again so am leaving it to see if it naturally reabsorbs. I don’t think anyone can answer whether you will need radiotherapy or chemotherapy as every case is individual. I am seeing the oncologist next week, I know I will need radiotherapy but that is for the other breast. I don’t yet know about chemo, I am told they will probably have that ‘discussion’. I will be having the hormone therapy tablets after all the treatment is finished. Yesterday I received 2 swimming costumes and a swim prosthesis which I ordered online, and we are going to the seaside for a couple of days this week, so I am hoping to have a swim in the sea, which I love and haven’t been able to do so far this summer, as this diagnosis and treatment etc has been going on since April. Will be thinking of you as you go for surgery, and trust all will be well. Think positive!  ... View more