Hi I have just joined this community I have just finished my full treatment for breast cancer after 10 years. I have been told that they have done everything to make sure it does not come back after having an aggressive cancer that had gone into my lymph nodes. I am very grateful to be here. My dad died two years ago of an aggressive cancer non Hodgkin's lymphoma and 6 months later my aunt of an aggressive brain tumor. I have just finished 5 years of letrozole and although I know I needed to take it I am glad that I have finished due to the side effects I had.
Finished Breast Cancer Treatment - My Breast Cancer ...
My Breast Cancer Community
Only five years on Letrozole! I’ve been on something very similar for six years now and it’s affecting my life quite badly - I’m due to see an oncologist when I can get an appointment, to see whether I can come off.Well done you - my cancer hadn’t got to the lymph nodes though it was satsuma sized.
It’s so good to hear from someone ten years on. My sister is dying of lung tumour metastasised to her brain, sadly.
Hi mathematics - so very happy for you at this huge milestone. Very well done you and your body, to put it lightly.
Very sorry to hear about your dad (my ma had Diffuse Large B cell Non Hodgkins Lymphoma) and your aunt. Sending you hugs if that's OK. Knocked me for six for many years after she passed.
I am about to start taking letrozole for my recurrent (after 2.4yrs) BC. This is because there is a "high chance" of it going to the other breast as the cancer was "abutting the skin" near the beginning of the right boob I still have.. as the cancer in my (now gone via mastectomy just over 3wks ago - 8inch wound from middle chest to under arm pit) was in different places but also in the middle of my chest. Both boobs "looked the same" said the registrar (apart from the cancer) ie with widespread mircocalcifications - and (having NOW read the pathology report), the left boob they took off had widespread DCIS. They didn't tell me that at the follow up - I had to ask for the pathology report a couple of days later when I realised I needed to see it. I'm able to work things out, having been an analyst and then social work care manager (ie social worker without the degree).
I tried Tamoxifen last time and felt utterly awful on it - plus my neutrophils went even lower (I have autoimmune neutropenia, lupus, widespread inflammatory arthritis, vasculitis, erythromelalgia, hypocomplementemia, sjogrens, heart disease etc) to 1.0 and even after halving the tamoxifen I still felt almost unable to manage every day chores. Quality of life was difficult before as had had to stop working but it was too awful for me and my comorbidities on the Tam. Also put me at higher risk of all types infection which I get often. Certainly couldn't be on it now as very immunosuppressed and naturally immunocompromised. So this time around they are saying try the Letrozole but I know it gives you bone thinning and arthritis right? I wanted to know what the side effects felt like for your and anyone else reading my response to you. I am going to have a Dextra(?) bone scan soon.. just to see what my base line is (that'll be interesting!) and then start with yearly further bone scans.
Can you let me know how old you are please if you don't mind (I'm a young 58.5yr old.. although only "at heart/mind" these days!) and what happened to you and your body on the letrozole?
Hope you don't mind me butting in on your post for support.
Thanks so much and hope you are having a celebration with your loved ones, albeit must be so difficult not to share it with your dad and aunt. Hopefully somehow they know... who knows.
Thanks again, keep safe and onwards!
Hi thanks for the encouraging words. I did not like taking tamoxifen but knew the benefits outweigh the negatives so stuck to them. They then wanted me to go on letrozole for 5 years, so I took them as well. They did check my bones and were happy with their density and gave me calcium tablets to counteract anything. I did get problems with letrozole such as running to the toilet a lot, breakthrough bleeding when I have passed the menopause. I am 56 years old. Also urine infections, which was put down to the letrozole due to the hormones. I also put on weight and went up two dress sizes and had trouble getting it off. I used to be a skinny size 10 very healthy and fit before I got breast cancer, which I found really aged me specially after the chemo, but never mind I am still here and grateful. It sounds as if you are having a really tough time. My body did tolerate the letrozole and it gave me a better chance of making sure the cancer does not come back. Although I know there is no guarantee. A good friend of mine who has since passed away lost his wife to breast cancer, which broke his heart and he told me to accept all the treatment they gave me while I was strong enough to take it as his wife became so ill they were unable to treat her any more like my dad actually. So hope that helped I would say the same as my good friend if you can tolerate it take it as it could extend your life. Take care and thinking of you with love.
Thank you so much for your kind response. Well it certainly gave you some difficult things to deal with... but, yes, you are through it, intact. I hope things start to change now positively ie you can start being proactive about decreasing your weight - that will be pretty wonderful I'm sure! Personally, I'm really not sure I could stand 2 dress sizes increase.... the cost of clothes alone. So very well done indeed for getting through that. I wonder if you had your Full Blood Count checked regularly? I have to anyway as I'm on Methotrexate... but what happened to your neutrophils? If you had an increase in infections that would be a main reason I think. I've had infections all my life - UTI, chest, you name it... no one realised it was due to my neturopenia. Be good to hear what the levels were like for you. If it was due to the letrozole I won't be able to take it.. I'm not strong enough naturally or on the methotrexate.
I'm so sorry to hear about your friend. I totally understand why he would say take EVERYTHING..poor poor chap... however I'm quite complex health wise and it may not be something that is good for me - quality of life is something I'm struggling with every day anyway and have been for years.. so any downturn on that, such as with the tamoxifen, is a no brainer... I'm not going to sit here in a chair unable to do much and at risk of arthritis getting any worse that could lead to fractures for the sake of being alive. I don't have any children sadly, so I don't have to worry about that, and my only family is my brother who is 61 and been in a nursing home for a year now with Parkinson and Lewes Bodies. I do have some third cousins but we're not close.. very tricky childhood led to me having no idea who my family are around the world.. although I did start trying to find them pre recurrence. Pretty amazing... but none direct as my brother couldn't have kids either, my mum was an only child and my father's siblings kept away as he was not a great chap.... and only one had a child. It sounds sad but it's OK... Had a lifetime to get used to it :).
Well... I'll see what the scan says, and how I feel after starting the letrozole, if I can.. So thanks so much again, and for sending love... I'm sending right back to you... with a huge smile for you and your loved ones.
Hi it sounds you are having a really tough time at present sorry to hear of all your problems I hope that you can get something that will work and you can tolerate with your other health issues. I have two children, who are grown up and independent. My son was in uni when I was diagnosed with cancer and did not come home only for Christmas when we literally went and picked him up. When I told him I was going back to work he was that relieved, in his mind I was better. and he came home again. He just ignored the fact I had had cancer and my daughter did the same as well. Talking about cancer was and still is a no no area. I went back to work the week after my radiotherapy finished much to the dismay of the taxi men and ambulance crew who had been taking me to hospital for my chemo and radiotherapy and told me no way should I be going back so soon. Subsequently I learnt that although I wanted to return to normal my body needed time and became very ill, steroids mask symptoms and give you a nice sun tan so until the effects of them wear off, when I went pale and thin, I did look a picture of health. Also no one mentions chemo fog the fact you cannot remember things such as your bank card pin numbers or you just get lost in town even though your familiar with it, that does get better though. I stupidly tried doing an exam just after chemo and failed miserably. However I took the exam a while after and passed it then so things do get back to normal. In fact I did become very ill mentally and physically so yes you cannot get back to normal that quickly after chemo and radiotherapy. I went down to 7 and half stone at my worst and I remember children would stare at me and one kindly asked if I was a man or woman it was that bad. Mentally my health just went and I am on tablets because of that for the rest of my life to keep me stable as I have a chemical imbalance of the brain. My husband reckons that the steroids and chemo tipped me over the edge. Sorry to sound I am moaning as I am grateful to be ok and still here. They did not think they would pull me back when I was so mentally ill so fortunately again for me the medication worked, it did take a few months and I stabilised. I know there are side effects to the drugs for cancer and the treatment is not good at all, but I found it was worth it and I would do it again if I had to to extend my life. Take care and I hope that you get offered a treatment that you can tolerate. lots of love.
Oh my goodness, that must have been so hard to understand, and accept, re your children not visiting and still not being able to discuss your cancer. Something they have learned deep down about not discussing illness or difficult issues has led them to this I guess? It sounds like (understandably) it is quite a hard thing for you to live with. But, of course, they will always be your children and I guess you want to protect them too, although you do mention they are adults, so, if I may (and I certainly would) you would have hoped they were very much part of the support you need, because it is clear you have and very much do need it reading through the lines.
You are obviously a very strong woman and good for you - we have to be in all ways in life - but cancer(and all conditions really!) is so very isolating, especially if you aren't being heard by your loved ones, whether they can bare it or not. I hope you don't mind me saying all that as I don't know you and it is highly presumptuous of me and a very personal and sensitive subject.. but hopefully it doesn't upset you, coming from empathy.. I have lived with this lupus and sjogrens all my life, and was taught (possibly as you were or as you passed on to your children - or your partner may have, someone) that it's best not to talk about illness, just get it sorted and keep your own counsel. So I never went to doctors until my heart started to complain much more strongly and that was around late thirties/early 40's. All the rest I'd managed myself ie skin, exhaustion, mouth sores, bone pain, but did go to gp with each infection as had to not being able to get my body to fight it with the likes of homeopathy etc!...and certainly my father would not allow me to be taken to them when I was very young and always ill with infections, covered in cracking skin and bleeding rashes, mouthful of ulcers, bone deformities, sick often and frankly not a well child. He was a christian scientist who ignores away illness ie very much mind over matter. Of course this all changed was soon as he became unwell later in life ;). But from 4yrs old, noticing the issues, he changed my diet to supremely clean and healthy via naturopathy, no sugar, no naughty anything, just veg, fish, whole foods/grains, fruit, salads etc plus tons of purified water via an American plug in at source contraption and one of the first juicers in this country.. Life was difficult at 4yrs old with freshly cracked nuts, half a grapefruit and a bowl of wheatgerm for breakfast as I didn't understand ;).. and having to eat high grade B vitamins spread on bread as couldn't swallow the tabs. It made a great difference however.. and I am grateful for that! I've written about this many times on the various hubs I'm on here, as I think it's a fascinating story (even though I do say so myself) and also because I know, having continued with this type of diet (maybe not as strictly and with the odd G&T thrown in for good measure!) all my life, that it has saved me from going down hill at a much earlier age. Not sure why telling you all that but I guess want to show that I understand what it's like to have close ones who won't/cannot talk about health - and, I guess, especially if it's their mother... the original care giver.. and it's just too awful to go there for them. But still, I do feel for you that they aren't able. But they're young still.... all in good time I hope for you.
You do sound also like me in that you want life to become normal again, to show strength and look forward, and very very early on... and you were the victim of your body showing you "hang on a minute, far too soon!".. as I have been many times... but not been hospitalised (although nearly the other week day after discharge as was nearly passing out whilst sitting down as still very anaemic/utterly exhausted and flaring). You'd gone through so very much... and well done you and your bod (and the medics) for getting you through it. I truly know I have to look after myself as much as possible ... but had a rather difficult happening here post op in that my friend brought round some front loading tops (as I don't usually wear them) a week before I got home and... flea/their eggs were on them from her big fluffy cat.. and now I have to manage that each day... AWFUL. have to wash the bed linen and clothes and me asap and go through all sorts of quarantining of clothes, sent most of mine off to be professionalyl laundered, and had the fumigators in, before which I had to.... hoover! I was utterly hanging and shouldn't have been doing ANYTHING like that.. but I had to. My friend had tried to sort it couple of days prior whilst I sat on my terrace, with semi hoovering and spray but it wasn't enough when I found a live one (all the while me being bitten to death each night and probably all day). What next???! So this too shall pass I hope (maybe after second round of fumigation at 28day mark of flea life cycle after I hoover everything within an inch of it's life!) - or it'll be rip up the carpets and hope can replace with wood etc.. not sure my freeholder (I have bought a leasehold property after downsizing from house - regret of my life!) will allow as on first floor. anyway, this isn't a serious issue (well apart from having to protect the massive wound from bites from them each night with mepore dressings after a good scrub down!)... so shouldn't grumble... but hey, why not... and the same to you.... this is what this site can be for... and so many do... and you get all the support here... even if you cannot get it from loved ones for whatever reason. You deserve support... and need it... as do we all... so please do just be honest and open as everyone here is as kind and understanding as you obviously are... and thank goodness for that eh! I live alone and most of my friends are struggling with life too, albeit to varying degrees and maybe not so ill and is about their house being done up or something - but it's all relative. Especially after I have now read the pathology report on Friday, post "post op" meeting... in which they really didn't explain the findings well. I was quite shocked. They did say "high chance of it coming in your right boob too" and, frankly, now I've seen the pathology report, I understand why! I cannot have chemo nor radiotherapy as my lupus and sjogrens would lead me to be at high risk of dire ramifications... so I'm OK about what might come.. however going to discuss with my MacMillan nurse tomorrow or Tuesday I hope. I needed to have a much more candid conversation with the Registrar on follow up. Unsure why they kept so much from me... possibly as I can present as rather distressed at times.. but then, as you can see from my writing, I'm very open.. if I wasn't I'd probably explode. Not good keeping things in for this woman.
Anyway, I do hope that was all OK to write? I was in Social Work prior to retiring on ill health grounds 2 years ago so it's just my way naturally to encourage openness.. to limit damage and upset.
Here if ever you want to chat... even if on the Chat bit... if you don't feel able to in the open forum. But am sure will see you responding to others along the way. You posting on here is a call out.. and I am glad to have been in communication as you helped me.
Love and continuing strength to you
Hi thanks for the reply that was fine to write. My family is a bit stiff upper lip, it is the way I was brought up and it probably passed on to my children and my husband is like it. My daughter has double scoliosis which was not easy for her she was offered an operation but it was complicated and would have meant cutting through her diaphragm and as she wanted to study singing, which she did do and has made a successful career with the degree she got, it would have meant the end of that. She is pretty stiff upper lip and does not complain about anything. I find people in generally do not like emotion or even cancer or any illness in fact. They are sympathetic but I did find it lonely. It was smile grin and bear it but when you are having chemo and you are getting through the first week,cannot face getting out of bed and feel breathless and if you do get up taking half an hour to get dressed. Most people send their love but you are left to your own devices as my husband was working full time and long hours, he had just been diagnosed with MS himself as well although he was trying to be supportive. I suppose the Big C does scare people still I think in general illness does scare people if they have not experienced it. I hope you get sorted next week with the mac millan nurse. Lots of love and I am not offended by your words.
Just to reply about letrozole - not everyone gets the side effects that you might get from it. So it’s worth a trial if you are offered it.
Hey Happyrosie. Yes, I will be trialling it... as I mentioned (probably in the previous response then, to the last one?), as have been offered it. Thank you and here's hoping! Hope you are doing ok. D
Hi Mathematics, congrats on 10 yrs war on BC. To DJK99 too.
I am 21 months post left mastectomy, then Chemo, Rx.
As my handle suggests, I am stage three, high risk.
I have been on letrozole since June 2020. All fine but recently (from August 2021) start to feel stiff finger joints in sleep, which can be relieved by doing open and close fist.
I have been recently diagnosed autoimmune neutropenia. My neutrophils have been 0.6 or 0.7 persistently. Touch wood, I don't have active infection. This is my story, hopefully can provide some food for thought.
Hi thanks for your reply. Sounds your also having a tough time. I do not know what my neutropenia level is. I know that I ended up in hospital while I was on tamoxifen with a bad infection and was on a drip 3 weeks. I had an abscess in my pelvic area was all I was told. I was also anaemic. I only have blood tests once a year and get told to repeat them because of my thyroid levels. I tend not to ask too many questions. I know that my tumour was very aggressive and had gone into my lymph nodes which is why they gave me letrozole for five years after the tamoxifen. I do get pain in my legs which feel like wooden pins when I get up from bed in the morning and take a while to get moving. It also happens if Im sitting down can be embarrassing it makes me hobble along until I can get going again. My feet used to swell up as well and my ankles are non existent although that is getting better. However I do not want to moan as I am grateful to be ok and still here with a good prognosis at present. Hope everything works out for you and you can sort out your hands sounds painful. take care.
Ah yes well I get all that now but not the swollen ankles (I've lost weight right now.). This is due to inflammatory arthritis which I've probably had for decades. I have trigger finger in my right hand which is annoying but can be sorted with injection of steroids if ever I get an invitation from Rheumatology. Asked enough times.. but of course all this got in the way and they're so busy. I am like a woman 20yrs older getting in and out of cars, chairs, bed etc much of the time and steep inclines are difficult as my hips, knees, ankles, general joints are not happy at all, so stiff and painful.
So I am worried about the letrozole re it making all this worse.. I don't know how much I can handle of a worsening arthritic body. And as for your neutrophils Masthematics, it does sound like yours must have plummeted to get hospitalised with severe infection.. makes sense as think I said my naturally low neutrophils dropped too lots whilst on Tamoxifen. It's no joke as you obviously very well know... can be life threatening at RWGR's level too. I hope her clinicians are very very aware and keeping a close eye on her...
I'm anaemic too from the dreadful huge haematoma after I bled out inside and the drain didn't work starting night of the mastectomy. It is a big ole cut and took out a huge amount (well, for me as my bobs are tiny). Had one transfusion and should have have another pre discharge but it didn't happen. On mega iron for third week from Monday... 710mg a day. Still feel awful. But just early days all round I know.
Anyway... this was supposed to be a congratulatory response but I can see you don't mind helping us others with your queries... thank goodness for sites likes this!
All the very best and hope to continue seeing you contributing on here when you feel able... so very helpful.
Love to you Dx
Hi RGWR - please see my response to mathematics below where I mention you. Are your clinicians and GP keeping an eye on your neutrophils very regularly now? You have been given support on how to keep yourself safe I am sure... `lots of keeping everything and yourself and those around you very clean, lotsa hand washing and antibac etc. etc. etc. And don't eat shellfish and cured meats and non pasteurised stuff... there's more but can't remember now but I very sure (hope) you've been given all the info by your clinicians. If you have an animal you mustn't handle the cat box, or pick up dog poop etc - hope you have someone else to do that. I don't know what your handle means... but obviously you've had the full monty not so long ago and now going through the meds hell... you're made of strong stuff I'm sure..but I am sending you all the strength I can muster and you know that we are here. Keep on fighting... as you obviously are in bucket loads. Hugs D
So glad for you. I was diagnosed with Lobular Breast Cancer in April this year. The lump which was only 9mm was removed and 4 lymph nodes but they found nothing in the nodes thank goodness. I was advised that I did not need either radiotherapy or chemotherapy but I am on Letrozole for the rest of my life. First two weeks of taking it were a bit unpleasant but nothing I couldn't deal with although I do seem to be struggling with my weight. I'm so thankful I went for my regular screening. I also had half my large bowel removed in April 2019 due to cancer and again no radiotherapy or chemotherapy and no bag or any other medications. So glad I went to the doctor with my symptoms that many would have ignored I'm sure. Living with half a large bowel isn't easy but I'm glad to be alive.
Hi I am glad they found your cancer and it was treated so quickly so you did not need the chemo or radiotherapy. Yes I am also grateful to be alive especially when you know of so many people who lose their lives to cancer. I did have side effects to the letrozole but when you compare it to the benefits I decided I could tolerate it. However I do remember how ill my father was and he could not tolerate any more chemo to extend his life. I suppose we are all individuals and need to decide for ourselves the best course of action to take with the advice of the specialists.Lots of love and take care.
And about letrozole again - a friend of mine had breast cancer about 30 years ago - lumpectomy. Recurrence last year in other breast, she decided against an operation or chemo or radio, she’s doing really well on letrozole alone with NO side effects.
That's a great post to read. V positive! V glad to hear she's doing OK on the meds... tough decisions of course. But age, comorbidities and quality of life etc... they're all in the mix for us individually. Wondering if she'd had bone and arthritic type stuff going on before she started taking the letrozole? If not then she was coming from a good base line.. Was it early stages? Presume had gone to lymph nodes if suggested chemo etc. That's brave but I have read that when a little older clinicians are warier of putting us through ops and chemo. Saw a great video of my previous oncologist talking about that the other day. Hope she continues to go well on the meds. Thanks for posting Rosie.
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