Need Support

[louise222]

Hi All, I had treatment for breast cancer in March 2015, I was put on letrozole to help reduce my 3cm left breast tumour, grade 1 - my oncologist was not concerned about this, and said this is completely treatable. So, I was on letrozole for 9months, mainly because I had to have a cyst removed from my pelvis, a twisted torsion they called it, I had a total hysterectomy in March 2015, and it was benign. So, I was put on the letrozole while I reciovered, and also as my bc was hormonal it started to reduce in size, eventually to 2cm, then, in January 2016 I had my lumpectomy and total ALND, I had clear margins, so the medical oncologist recommended just radiotherapy. I had a check up in April this year, all clear. My situation is that I get pain in my arm and surgical site, especially if I am tired or stressed. So, very often! My GP has prescribed Pregabelin which, I think, has now become inaffective. I asked one of the bc nurses and she thinks it’s the affects of the radiotherapy, she explained that some people may have discomfort for a year, some for five years, some for a lifetime. She said, you’ve drawn the short straw I’m afraid. I am just so tired of living with this pain, although I am assured that all is well. Anyone in a similar situation? Pauline x

[carolinenailsea]

Sorry to hear of your experience. I can understand how fed up you must be being in constant pain. I havent had the same experience exactly although a year later (post radiotherapy) I do get some discomfort in my breast. I do not need painkillers though. Its not much fun for you being in pain. I do hope you continue to be cancer free. Best wishes Caroline

[louise222 in reply to carolinenailsea]

Thankyou Caroline, yes it isn’t much fun at all, the nurses have said it’s post radiotherapy pain, and that some people only experience it for a short while, whilst others can suffer a lifetime. I wish someone had told me that before, although I would still have had to have the radiotherapy. It’s funny though, I look after my two grandchildren a lot, my daughter is a single parent and she has now qualified as a paramedic, I spend lots of time with them, they are aged 13yrs and5years, my daughters hours are extremely long, I have just had them whilst she has done 4 nights, then one day followed by one half day, she is only off Christmas Day, then back in on Boxing Day, whilst I am busy,looking after them, doing some of her housework and my own, I don’t get much pain, but afterwards, when I relax it comes back again, my daughter thinks it’s phycological, but I think pain is pain wherever it comes from, it usually is at its worst when I am overtired or stressed. I try not to let this get in the way of my everyday life, and indeed feel fortunate to be all clear. I suppose the pain reminds me of something I want to forget. Many thanks for your reply.

[Margt34]

Hi although I am not experiencing pain in the surgery area ,my best friend does and she is 4years post op her oncologist says it is possibly scar tissue and nothing to worry about.I think we all suffer some kind of after effects and we are super aware of things I think it is fear on our parts.I had chemo and radiotherapy and am suffering with terrible back and hip pain but I have been investigated thoroughly and all is ok and I am 10 months post chemo so I am trying to forget the C word and you should too try not to let it let it rule your life good luck xx

[louise222 in reply to Margt34]

HibMargt34, Thanks for taking the time to reply to my post. I am sorry to hear that you are suffering with back and hip pain. I hope that, as you are 10minths post op, that this will quickly diminish. As I have said, it really gets me down, but then I suppose some people have a worse time than I do. I do try to forget the C word and it is now never mentioned in my family, but my two daughters were with me at every appointment, and never missed a day, they were there every single day and nights when I could not sleep. I was very well looked after. I do try not to think about, as you say, I need to not let this rule my life, but the pain can be a constant reminder of it. I hope your friend is ok, I think that having a friend that has had a similar experience is somewhat comforting as you can talk things through and reassure each other. Although you would rather that she hadn’t gone through it at all of course. Thanks for your reply, and let’s cross our fingers that, in time, the memories and pain go away for good. All the very best. Pauline.

[123048 in reply to louise222]

Hi Louise, so sorry to hear you are in pain, have they been able to find out if your pain is nerve or scar tissue or both. It would be good if they could investigate. I had radiotherapy after axillary clearance and the scar pulls and if I don’t stretch as often as possible (this always hurts) it will become more painful if I don’t, so I was told f you can massage, with oil, the scar using round movements with three fingers with medium pressure in order to soften the scar and try to separate the away from the attached tissues. Apparently the scar can soften over a couple of years. On reflection your suffering sounds like nerve pain, perhaps a cortisone injection or something may help, make a fuss, if this is long term, get as much help as you can. I suffer from lymphodema of the left breast, having different size boobs is a pain, and no amount of tape, special bras are helping, so if anyone out there has any knowledge in how to lessen this problem, I would be very grateful.

Wishing everyone a happy Christmas 🎄 and a blessed new year xxx

[PerformancePoet]

Hi Louise sending love for now and will reply in more detail later x