Breast Cancer Now Forum

happyshopper · ‎26-05-2015

Hi all, Today I have had to visit the bc clinic after my gp referred me with slight redness (3cm x3cm circle) over my scar area. If this had been anywhere else on my body I wouldn't have batted an eyelid. However, I thought that for peace of mind it out to be looked at (I had also noticed an enlarged tender axillary node too, but that disappeared quickly). Also a lump which turned out to be ? cartilege. Immediately I convinced myself that it would be the worst outcome and now I have been reassured that it seems ok (doing a scan in 2 weeks time) I now feel really silly for overreacting and think I have wasted everyone's time! I am 10 years down the line with a few hiccups along the way, but just cant stop myself having a complete meltdown every time I find something, and then feel so bad for wasting everyone's time when it fortunately turns out ok. I wish I didn't get like this and would be grateful to hear if anyone has any suggestions or techniques for dealing with these situations. I really shouldn't be doing this anymore xx I am 10 years down the line and

happyshopper · ‎26-05-2015

Thank you Sam, i will try and ring the help line. I have just had my appointment, the consultant didn't seem too concerned and has referred me for an ultrasound scan in 2 weeks time. She explained that you can get redness and itching after radiotherapy (I certaiunly did have this when I had my radiotherapy, but that was 10 years ago) but couldn't explain why this has started again 10 years later... She also couldn't feel the lump and said it was "ribs" - this concerns me as they couldn't feel my 2 lumps 10 years ago and told me all was OK !!

happyshopper · ‎25-05-2015

Hi all, Just to recap I was dx 2004, underwent bilateral mx , radiotherapy, oopherectomy. I have had a few scares over the years, the most recent being in Feb this year when I felt a lump under scar line. I was seen in clinic (not by my usual surgeon) and had an ultrasound of that area only, and was told it was "cartilege from my ribs". He was fairly dismissive actually. I also mentioned that I had itching all over my breast area, but couldn't see anything. At this he just shook his head, didnt say anything and I left, feeling bad that I seemed to have wasted his time! A few weeks later, the itchyness was still there, and then I noticed some redness aound the scar near my armpit. This was followed my a visible circular area which appeared just above the scarline, about the size 3cm x 3xcm. I went back to my GP, who thought it was eczema and prescribed hydrocortisone. I went back 2 weeks later and although the redness had settled, I still had this circular area which I could see when looking in the mirror, plus the itching. I had also noticed a bit of tenderness in my armpit, and to my horror found a small tender lump (? lymph node) which has now gone. The GP said she could see this circular area and thinks it could be fungal, given me some new cream and refferred me to the breast clinic (to my original consultant) to be sure. I have this appointment tomorrow and am nervous that they will think I am wasting their time again, especially as I was seen a few months ago. Has anyone else experienced this sort of skin change / itching at all? Thanks x

happyshopper · ‎08-05-2014

Dear Keeks and Frazzledfifty, Thank you both so much for your replies. Keeks, I am so sorry to hear that you had to cope with your diagnosis whilst dealing with unemployment, can't believe you attended an interview the day after your diagnosis - I truly admire your strength and I'm not sure I would have been able to do the same. You are so right about how what we do defines who we are. I hope you are doing Ok. Frazzledfifty - gosh, we seem to have a similar BC story (time of dx, LD, OP...). Thank you both for making me understand that these feelings I have are "normal" . As I mentioned, I think that I had used work to divert my focus away from my diagnosis/treatment etc. - it gave me something else to think about. Since I have stopped working, the enormity of what I have actually been through has really hit me quite hard and I have had a few wobbly moments, especially about the future etc. You are right - be thankful for the good stuff, and I do have a lot to be thankful for. thank you ladies for your support. XXX

happyshopper · ‎28-04-2014

Hi all, I haven't posted on here for a while, but my last posts were to do with looking at the process of having to take ill health retirement from the NHS - mainly due to the problems I was having with LD. (In summary, I was dx with breast ca in 2004 aged 39, mx, then propylactic mx and failed bilateral recon, followed by lymphodema and osteoporoosis, neurological condition) . Well, I did proceed with IHR in the end, and was awarded Tier 2 (thought that I would get Tier 1) which finalised in October 2013, when I was 49. I have completed almost 30 years in the NHS. Although this was not something I wanted to have to do, I understand that it was the right thing to do if I wasn't going to worsen my LD. However, I have really struggled with the whole enormity of it all. I didn't feel happy at getting it - I just felt numb (although I know I am in the most fortunate of positions with a OKish income from my pension to tide me over financially), which makes me feel very ungrateful. I feel very lost and very guilty for not working, especially at the age of 49. I didn't realise that so much of my identity was tied up in my role and now that, my credibility,status, has just gone. My children are now teenagers, so don't even have the excuse of having to look after them! I have never not worked, and despite taking up voluntary work, I feel very lost! I know that the NHS is under alot of changes etc, and it makes me feel so bad that my friends and collegues are continuing to struggle on , whilst I am swanning about at home and not able to help them out. Also, since I took IHR, the whole enormity of what I have been through with breast ca has hit me like a truck. Perhaps without realising, I used work as a way of blocking out my diagnosis, treatment etc?. Without doubt, physically , IHR was the best thing I did - after 18 mths of not working, my arm measurements have returned to "normal", and I don't have the massive amount of fatigue/exhaustion to deal with - I can pace myself more. I am wondering, has anyone else experienced this at all? I need to move on from my little "pity me" moment but not sure how......XX

happyshopper · ‎17-04-2014

Hi Kazey, Thanks for your thread. Although I am now 10 years down the line, I still have wobbly moments (having one at the moment!), so I was really pleased to read this - I have just ordered it now - thank you. HSx

happyshopper · ‎20-06-2013

Hi Zeppa, Thanks for your post - I am interested to hear about Komprex II (foam pad) that you use. I too have LD of trunk, chest and now arm and slightly hand. I find the truncal LD quite troublesome and because I have had it since 2006 it is chronic and appears to respond more to the deep oscillation than my arm (which is more recently diagnosed). That fits in with what you are saying. I have to say - since I have taken medical retirement (computer work was causing awful flare ups of my LD) and avoid anything which causes aggravation as much as possible, my LD has been so much more settled . I miss working hugely, but I am enjoying the benefits of not having the continued aggravation to my LD and therefore I feel that it is much more manageable. XXX

happyshopper · ‎17-06-2013

Hi sandra, I ususlaly just have a session when I am having a bit of a flare up. It's the one perk you get with LD to have such a relaxing treatment! I'm glad that you get it on the NHS and according to my LD nurse, this is happening more across the country. I believe in Germany they actually use this treatment post surgery, to disperse any fluid build up immediately and help act as a prevention. It is also apparently popular in sports injuries. Enjoy! XX

happyshopper · ‎11-06-2013

Hi Joan, Sorry to hear about your PE and good to hear that you are recieving treatment. I developed a PE in 2006, 10 days afterreconstructive surgery foloowing my BC (recon plus prophylactic mx and double recon). I was taking Tamoxifen at the time and remember querying with the pre-op team and surgeon whether I should stop taking it before my surgery but told it would be fine (!). I was treated with warfarin for 12 months and touch wood, now problems since, though double check contra-indications on any medicines that you have been prescribed, as I have been prescribed things that are contra-indicated if you have a history of embolisms. I was utterly devastated at the time and just horrified that it had happened (I was 40 yrs old). It made me really paranoid about flying and travelling, but I'm much more relaxed about it now. Following discussions with my doctor, if I'm flying etc. I take a small dose of aspirin (75mgs) about a week before I go, and for the duration of the holiday (not to be taken if you are already on anti- coaguaulant therapy. Good luck with your treatments and take care, XXX

happyshopper · ‎10-06-2013

Hi sandra, Hope you've recovered from your electric shock!! I have deep oscilation thereapy which I pay for privately (performed by my wonderful LD nurse who retired and now does private work). It is very relaxing and I feel that it has helped settle down my LD (especially truncal) when I have a flare-up. She is very impressed with the results on many of her patients. Because I have now taken IHR (due to computer work exacerbating LD) my LD has been so much better and more manageable, so haven't had to have any sessions since March, which is great. I am sure you will get a mix of positive and negative experiences from users but from me, it's a thumbs up! Hope this helps! XX

happyshopper · ‎09-04-2013

Dear Lin, I have just seen your post and I'm so sorry to hear that you have a diagnosis of secondaries. You will have no issues with your IHR application I am sure but having just gone through the process I will help wherever I can. XXXX

happyshopper · ‎04-04-2013

Dear all, Thank you all so much for replying and posting- I have gained alot of comfort and reassurance from them. I'm so sorry that I haven't posted for such a while - firstly, having to wait for the computer to be free from my 2 kids (laptop broken!) and secondly, I was moping so much in self pity, which was no good at all. I'm pleased to say that I appear to be leaving my self-pity party and am now beginning to look at my situation with some fresher (and more positive) eyes. I think what was contributing to my negagtivity were the comments and "looks" from other people when I told them I was leaving work due to IHR - I could see them looking me up and down in a puzzled way as if to say that there is nothing wrong with me, so why aren't I working when still 48? In addition to my lymphodema problems, (and neurological and autoimmune problems) I had a real scare last year, when ' due to back and right side pain, I underwent CT scans and MRI, which shook me to the core (I am very fortunate that these were apparently OK). My spine MRI did show a haemangioma and I was then sent for a bone scan which, thank God, was OK. But... this really shook me up and gave me a massive reality check. I guess what I am trying to say - I'm getting upset that I have had to give up nursing when actually, there are bigger things to get upset about. And at the end of the day, I was a very small cog in a very big wheel and that wheel will carry on turning very well without me... And I have to admit , I am beginning to feel like a weight has been taken of my shoulders, and I don't have to worry about whether I've done anything wrong in my working day, or that I haven't got something finished on time , or I'm feeling too tired, my arm is swollen and achy- that doesn't matter anymore. I saw some ex- colleagues last week who commented on how much better I'm looking too, so something must be right! Onwards and upwards... my best wishes to you all XXXXXXXXX

happyshopper · ‎20-03-2013

Hi everyone, I have worked as a nurse in the NHS for 29 years. Unfortunately after recon surgery in 2005 I developed truncal lymphodema which then progressed to arm and now hand of my dominent arm. To cut a long story short, I have recently been given ill health retirement from the NHS (Tier 2). After some initial relief that all was sorted, I feel very low now the dust has settled, and very tearful when I think of what I have lost. Also, the drop in income doesn't help, but I am grateful to have income at all. I know that I should be hugely grateful that I no longer have to struggle with working, worsening my lymphodema and certainly a big reduction in stress levels, which must be beneficial to me in the long run. However, I feel very lost, I have lost my identity, my professional skills, all that I have worked so hard for...I have never not worked and now I am struggling with coming to terms with it all. I really didn't expect I would feel like this at all. I am 48 years old, by the way. Has anyone else experienced this, or does have anyone have any advice? I would really appreciate any tips at all. Many thanks XXX

happyshopper · ‎16-03-2013

Dear all, I thought that I would let you know that I have just recieved a letter from NHS pensions to say that my application for IHR has been accepeted and that I meet the criteria for Tier 1 and Tier 2 (does that mean I get Tier 2?). I am really glad it is now all over and I would like to thank you all for your kindness, support,comments and advice - thank you so much and good luck to each and every one of you XXX

happyshopper · ‎16-03-2013

Dear all, I thought that I would just update you - I have just recieved a letter from NHS Pensions stating that my application has been successful and I have met the criteria for Tier 1 and Tier 2 (does that mean I will get Tier 2?). I am so relieved that it is all over - my Union support has been amazing and I would just like to thank all of you on here who have offered support, comments and advice - thank you so much XXXX

happyshopper · ‎16-03-2013

Dear all, I thought that I would just update you - I have just recieved a letter from NHS Pensions stating that my application has been successful and I have met the criteria for Tier 1 and Tier 2 (does that mean I will get Tier 2?). I am so relieved that it is all over - my Union support has been amazing and I would just like to thank all of you on here who have offered support, comments and advice - thank you so much XXXX

happyshopper · ‎16-03-2013

Dear all, I thought that I would just update you - I have just recieved a letter from NHS Pensions stating that my application has been successful and I have met the criteria for Tier 1 and Tier 2 (does that mean I will get Tier 2?). I am so relieved that it is all over - my Union support has been amazing and I would just like to thank all of you on here who have offered support, comments and advice - thank you so much XXXX

happyshopper · ‎16-01-2013

Hi moorcow, Thanks so much for letting us know about this site - I've just had a look and can't believe I've got so excited about compression garments!! XXX

happyshopper · ‎14-01-2013

Dear Katyb, I am so sorry to hear that you have had such little support from your trust during this difficult time. When I was clinical it was much the same for me too, but I was not given the option of IHR at the time, just told that I had to find myself another position or have my contract terminated - simply because I needed to wear a sleeve and wasn't able to! This is what I have done and now this isn't working for me either (same trust by the way). It is unfortunate that the NHS, in some cases and Trusts, are so uncaring and utterly unsupportive. Good luck with your union and I hope they are able to help. I am just completing my section of the IHR form before I forward it onto OH. My manager has just told me that in light of a letter from the OH dept, that HR and herself need to see me in a formal meeting. I don't know what this letter actually says, but my manager is indicatiing they need to look at redeployment options(not that there appear to be many jobs out there at the present?). Scary. I have just written a statement to be included in the IHR application form explaining what I have done, my progression of LD etc. and other medical issues. I also have a supportive letter from my LD Specialist nurse who has advised that despite wearing compression garments my LD is aggravated by IT work and confirms that I am recieving all available treatment options, no further treatment options to offer me, and in order to manage the LD I should avoid activities which continue to exacerbate symptoms, such as prolonged computer work and handwriting, and that by continuing with these activities will put me at risk of further deterioration and will be detrimental in the long term. I hope this statement will be OK - I understand OH is also writing to my GP too. Like you katyb, I am 49 years old and can retire at 55. I wish you all the best, take care, XXXX

happyshopper · ‎08-01-2013

Dear Naz and Beryl, Reading your posts was exactly the way I felt when I had my bilateral recon 6 years ago. I went into hospital anxious though optimistic about how nice it will be to have breasts again, but when I woke up, the overwhelming distress that I felt about my recon hit me like a ten ton truck. like yourselves, I absolutely hated it. I had bilateral expanders in and I just wanted them removed. They were alien rocks stuck to my chest, nothing like a breast at all. My first check-up appt i was in floods of tears (infact I seemed to be constantly in tears), asked for them to be removed, much to the shock of the PS. No-one appeared to understand how I felt- noone - it was almost like an out of body experience and unfortunately those feelings never went away. To round it off I had a PE (blood clot on lung) post-op, and a nice dose of cellulitis around one of the implants, meaning that I had to go back into hospital again. The infection then triggered off truncal lymphodema - I just didn't think it could get any worse and the regret of having that op was massive. I felt bad because others seemed so happy with their recon and I didn't. I wasn't able to have them removed for at least a year due to the PE, and I underwent many counselling sessions in an attempt to accept the recon. Although my distress did reduce, it never went away and I remained determined to have it removed. I did eventually have them removed in 2008, and went back to being flat chested with prostheses. I didn't choose to have breast cancer, but I did get it, and as a result I lost my breasts in order to survive. I strongly feel that their should be more support for women undergoing mx tohelp them to accept their change of body image, instead of the solution to the problem being recon. In many cases recon is ideal and acceptable for many women, and the thought of remaining breast- free unthinkable for many. I really do understand and hope that you both find an answer - just don't rush into doing anything and remember that you are recovering from major surgery - effects of anaesthetic etc. which can have a dramatic effect on your emotions. The dust needs to settle so you can make informed and rational decisions and I wish you a speedy and peaceful recovery. XXXXX

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