Breast Cancer Now Forum

I was diagnosed with Invasive BC five years ago this summer.  Lumpectomy, full lymphnode clearance, chemo then rads.  I have been on Letrozole since finishing treatment, and have been told that I need to stay on it for a further five years, as per NICE guidelines. I would love to say something positive re the fatigue and joint pains- well the fatigue has only improved in the past eighteen months, but the joint pains are chronic, and sometimes I am hobbling around like someone three decades older than my 57 years.  On really bad days, I cannot drive as my fingers are too painful.  To add insult to injury, the Letrozole has caused bone thinning, so I also have to take medication to try to stop it progressing. Borisdog- I was in a similar situation to you.  I was simply too unwell to continue in teaching, so I retired early three years ago.  I tried to go back, but the rigours of the secondary classroom were beyond me, as I had totally lost the robust tenacity I had had before diagnosis. In spite of all this, I feel it is a choice between the devil and the deep blue sea. Studies show how very effective the aromotose inhibitors such as tamoxifen etc are, at keeping the cancer from returning, so it is a very annoying, and often debilitating, side effect I am prepared to put up with!   ... View more

Hello, Em6619, I read the title of your post, which caught my eye as my late grandmother had Paget's during the 1950's when they had few treatment options other than surgery, and cancer treatment was not as advanced as it is now. I agree totally with you about breast screening starting at 25- indeed, when my daughter attended my intitial diagnosis appointment with me, the Consultant actually advised that she started having mammograms from the age of 25 [I was 51 at diagnosis five years ago] so perhaps it is something currently being considered by the medics. I cannot give you any specific info regarding treatment for Paget's- I had a lumpectomy, full lymph node clearance, 3xFEC, 3xTAX, followed by rads, for Invasive DCIS, but I thought I would send you good wishes for your consultation on Wednesday.  I think you will feel a lot more settled once your Treatment Plan is in place.  It may not seem like it at present, but you do get through it.  BC is one of the most researched cancers, and nowadays we all benefit from the fantastic medical advances, compared to decades ago when surgery was the only available treatment. I see you are only in your thirties, and I believe there is a Board on this forum especially for young women diagnosed with BC, where you could also get support. Take care.   ... View more

I share your annoyance, Poppies, at not having been warned about this potential side effect. 'Collateral damage' is what my Consultant called it at the time of my corrective surgery.  Even if it happens rarely, it still needs a mention before starting chemo, in my opinion, because it has a major impact on those effected!! ... View more

Hello, Poppies, I do not come on here very often now, as I am almost five years post diagnosis and treatment.  However, I thought I would reply when you mention weakness to your bowel wall. It is a rare side effect to the chemo, so it is not well documented.  The chemo can cause damage to healthy tissue, and in my case it caused a Stage 3 Prolapse of the uterus, bladder and part of the bowel.  Mine was very severe, and seven months post chemo, I needed a Total hysterectomy, and a major repair to the bowel and bladder, as I was in a very bad state. I had to work with this problem for four months before the surgery, and to say it was challenging is an understatement! I do not think there are many ladies to whom this happens, so this may account for few replies to your post. Please feel free to PM me if you wish. ... View more

Hello, ladies. I am now almost five years post treatment [lumpectomy, full node clearance, chemo, rads] and so I rarely come on the forum nowadays. I have been on Letrozole for the five years since diagnosis, and I am afraid the dreadful joint aches and pains are still as bad as they were in the early days of taking it. However, on a positive note, the sheer exhaustion brought on by this drug, has got better over the past eighteen months, and I no longer need an afternoon nap, but as you can see, the fatigue went on for a long time- around three years!! I was on Naproxen to help with the pain, for quite a long time, but it only took the edge of the pain, and caused me other side effects to the extent that I now go without any pain killers, apart from some paracetamol on really  bad days. NICE guidelines now say BC survivors need to remain on Letrozole for ten years, as it is so effective at reducing the chance of recurrence, so I grit my teeth and put up with it!! ... View more

Hello, Jackie,  I have just read your post and it brought back memories of the terrible anxiety I went through four years ago, when an Invasive DCIS was picked up from the national Screening programme. I very wrongly thought at the time, that I would attend the recall appointment at my local Breast Care unit, and would go away the same day, knowing exactly what I was dealing with.  How wrong I was!  Tests are staged, step by step, with the results of one test informing what the next step will be.  I would liken it to reading a novel, when the plot is gradually revealed to you. In my case, my recall from the mammogram was at the end of August, and I did not get the complete picture until the beginning of November. Four years on from a lumpectomy, full lymph node clearance, chemo, rads and then Letrozole daily, which I must continue to take for a total of ten years, I remain, so far, with 'no evidence of disease', as the Consultants now like to phrase it. Waiting for results is like a modern day form of torture, but you do get through it, and come out the other side. All the best, and do let us know how you get on. ... View more

Carol231- just to wish you all the best for your surgery on Friday. The anticipation of the op is always worse that the procedure itself, so try not to get too concerned!  Easier said then done, though, I know!! ... View more

Yes, I so agree with you, Melena.  I am always moaning to my husband about the SE of Letrozole, and yet I will feel really vulnerable once I stop it, so it is a nice safety net to now be told we need to stay on it for ten years! ... View more

My return to work interview was three weeks before I returned to school. I had had almost eighteen months off sick, due to complications post treatment. I took my Fitness to work slip from my GP, which recommended a phased return over four to six weeks- longer than the average, because the chemo had also damaged healthy tissue, necessitating major surgery post BC treatment- namely a Total hysterectomy, and a major repair of the bowel and bladder, as a direct result of damage caused by the chemo. As I was still healing from the surgery described above,  I was subject to bowel and bladder urgency, so it was also noted that I needed a TA in every lesson, to supervise the class, should I need to rush to the toilets during lessons.  I was also not allowed to lift sets of textbooks, carry marking to other classrooms, move classroom furniture etc, and so it was all duly noted at the interview by the school business manager, who was in attendance.  She wrote it all on a formal document, which was then passed to the site supervisor, so he was aware I may need to call on his help for moving resources etc. I have to say my Head was just brilliant- he employed a Supply teacher to shadow my timetable for six weeks- initially, she taught the bulk of my lessons, whilst I caught up with various paperwork, schemes of work etc, as I was Head of Faculty [I have since taken voluntary redundancy, and no longer teach] We then built up my teaching comittment, part time initially- team teaching with her, half a lesson each, and she came in and taught the lessons the days I was not in school. I eventually built up to a full timetable as the weeks went on.  School allowed me to stay at home two to three days a week to begin with- such a blessing, as I was still so frail, as the whole treatment thing, surgery etc, had totally wiped me out.  I found that even giving out resources in the early weeks, too exhausting, and it is really important to accept any help offered, as the rigours of the classroom come as a real shock to the system after a long absence. The interview was so supportive- it was a chance for school to offer as much help as they could, and I understand that employees who have been through cancer treatment are covered by the Disability Act, so employers should make reasonable adjustments to ensure your return to the workplace is as straight forward as possible. All the very best for your return to work. ... View more

Hello, Dizzy Cow. You must be relieved to have a date for your radiotherapy. Personally speaking, two weeks recovery may be a bit too soon- the fatigue post radio can be overwhelming. Maybe leave it open, and make a firm decision once you have finished the treatment and see how you feel? I found the fatigue would just suddenly envelope me, it would feel as though someone had removed my power 'battery', and I had no option but to lie down!  I hope it all goes well- take care. ... View more

Hello, Eileen 728.  It was around four weeks post radio that I returned to school, as fatigue issues with such treatment are a big deal, and I needed a daily afternoon sleep for a long while afterwards.   I was not really fit to return to the classroom at that time, and as you will see in my previous response to this post. However, I had no option as I had exhausted all my sick pay, but the Head was very good with a longer phased return than normal, which my doctor recommended. Getting your body habituated to the Letrozole was a real problem for me, too, and I had regular 'funny turns', and vomiting on occasional mornings, for the first year, but three years down the line, I am fine, apart from the chronic joint pains, which is another side effect of Letrozole. As far as questions from students were concerned, I made a brief announcement at the start of each lesson with a new group, that I was pleased to see them again after such a long time, as I had been in hospital being treated for a potentially life-threatening illness, and left it at that, but I am sure they could draw their own conclusions as I was still wearing a headscarf to cover my balding/patchy bits, but had kept around half my hair with the Paxman scalp cooler. Just one student made a comment a few months later when I felt my hair was in a reasonable state to remove the headscarf- which was 'Your hair has grown back nicely, Miss.  It looks lovely'.  How sweet was that? All the best.   ... View more

I did not realise that about free prescriptions for all at 60- I will be surprised if that continues for much longer. My Exemption Certificate expires next year, so I will re apply as you have outlined. Many thanks and take care. ... View more

Thank you for that info, Magical Moon. When you say you will no longer need a Medical Exemption Card when you are 60, is that because the government still gives free prescriptions at 60, if you are born by a certain year?  I was born in 1959, so will not get my state pension until I am 67, so I am supposing that will be the same age for my age group to get free prescriptions- but as you say, they could easily decide to change the rules in the austere age we live in! ... View more

Hello- I haven't posted on here for ages but saw your post and thought I would let you know what happened with my phased return to teaching, three years ago now. First of all, I remain forever grateful for the generous Teachers' sick pay scheme, which gave me six months of full pay, and six months on half.  I needed to take all of it, as I had ha the full whammy of lumpectomy, full lymph node clearance, chemo then rads.  Complications meant I was still not properly robust enough to return to the rigours of the secondary classroom, but I had no choice as my pay would have stopped completely. My doctor wrote on my return to work note, that he recommended a phased return over eight weeks, in view of my particular situation.  I think the average is around four weeks. I was concerned that my pay would be reduced until I was back up to full time, but my school business manager explained that once I was back at work, phased return or not, I was entitled to go back immediately to my normal full time salary. My school were brilliant, and they employed a Supply teacher qualified in my subject [MFL],  who took my lessons the days or part days, as I was building up to a normal timetable.  She team taught with me on the lessons I taught, so I cuold build up my stamina to the requirements of the classroom once again- as a year away from teaching is a lot in this profession!  School sat down with me to discuss my timetable every two weeks, building it up gradually each fortnight.  They also let me have a classroom assistant in every class- not just my SEN ones.  I cannot tell you what a help it was to have another person helping me hand out resources, which sounds a trivial thing, but I was completely exhausted and wiped out by lunch time, and this extra help made such a difference. I think teachers are not good at asking for help, as we are used to being self-sufficient in our classrooms, but I would urge you to take any help offered, as you soon forget after a break away, just how full-on the job is! I hope this helps, and all good wishes for your phased return. ... View more

Hello, Sue 456.  I just thought I would look at this section of the Forum, although my lumpectomy, full node dearance, chemo and rads for PBC is now nearly three years behind me. When I read your post, it brought back memories of the very lonely place I found myself in after my initial diagnosis. Family and close friends are lovely, but really, non cancer people just do not 'get' the isolation and terror that you feel upon initial diagnosis, and vague pleasanteries such as 'you will be fine', although kindly meant, really do not help-  the floor has just been taken away from under you, and no one can truly understand how that feels. My initial Biopsy for the teeny lump picked up by the breast screening programme, came back as inconclusive, and I understand that is quite normal when they are dealing with small areas of tissue.  I then had more in-depth tests which confirmed it was cancer, followed by a sentinel node biopsy, which showed that three out of ten nodes tested, were also cancerous, which had spread from my tiny DCIS lump.  I then had a lumpectomy, full node clearance, six cycles of chemo, then radiotherapy.  Thankfully, my MRI and bone scans were clear of any secondaries, but I understand it would have spread within six to twelve months, had it not been picked up so early. The waiting for results is certainly the worst part, as you feel a lot more settled and less anxious once your treatment plan is in place, as most ladies on here will agree. One the things I also found most difficult to come to terms with, was that I had assumed the medics would be able to tell me straight away exactly what type of cancer it is [mine was Oestrogen positive], the stage and grade etc. However, it is very much like reading a long novel, and the 'plot' is gradually made clear as you read through the story- it actually took eight weeks before I had the full picture, because they perform the tests and procedures in stages- once one procedure is complete, that then informs the Consultant as to what the next stage of treatment or surgery should be etc. Do keep posting on this forum, as everyone is so kind and helpful- I am sure you will start to feel better once your treatment plan is in place, and things become clearer. All the best x ... View more

Hello, Tess.  I was so interested when I read your thread on other problems post BC treatment. I had a lumpectomy, chemo and rads over two years ago now, and although I did not have any problems with my lungs or heart, I had to have major surgery for prolapse of the uterus, bowel and bladder.  When I questioned my Consultatnt, he did concede that chemo can damage healthy tissue, as well as kill off the cancer cells, and this was very likely caused by the  effects of chemo on my soft tissues. Considering, like you said, I, too, had been perfectly healthy, with no more than the usual coughs and colds before diagnosis, I am also very slim, as weight can often impact on the type of problem I had- I am convinced that chemo causes a lot more side effects than the medics are prepared to admit.  I guess that in the general scheme of things, chemo is still very much in its infancy, and its effects can be much more long-reaching, and have a greater long-term impact on the body than the oncologists are prepared to admit. ... View more

Hello, Janeypie.  I think you would be surprised how quickly hair starts to 'take off' once it gets back into the growth cycle.  I kept about 50% of my hair with the Paxman scalp cooler, which gave me a helping hand in re-growing a jaw length bob. The hair I kept was already at jaw length, and my hairdresser was brilliant in styling it so that the new growth blended in, with the view to it catching up to the same length.  She regularly trimmed the ends of the new hair ever so carefully, to encourage it to thicken up from its baby-like status in the early weeks and months. I used to cover my balding/patchy bits with bandanas or thick alice bands when I went out, but my hairdresser told me it was vital to expose my scalp to as much air as possible, to encourage re growth [so that probably gives you an answer regarding continuing wearing the wig] I also ate a three egg scrambled egg twice a week, as eggs are a brilliant hair food, apparantly. Two years post chemo, I now have a thick bob which is all the same length, about an inch below the jaw line.  My fringe is quite passable, but has not really returned to the same thickness as before my treatment, but I am more than happy with what I now have. When you have been through chemo, you never complain about a 'bad hair day' ever again!! ... View more

Hello, Melena.  Pleased to read you are feeling a little less anxious. I know exactly what you mean about not quite being able to take in that someone has had cancer and actually got though it to tell the tale.  I think for a long time in the past,  we have all been programmed to see cancer as an automatic death sentence, but thankfully that is no longer the case for so many of us who survive treatment, and go onto live for a good number of decades.  The worry of a recurrence never totally goes away, but anxiety does lessen the longer you are away from finishing treatment, and you can start relaxing a little- although that is far easier said than done, as I am sure you ladies will agree!! ... View more