Side effects Radiotherapy

Hi Happy Feet, I am hopeful it is something simple, I am in a lot of discomfort and the 6th can't come soon enough. I have some real tender points that are ultra sore and wearing bras is definitely leaving indentations and large pore like skin. I can feel some skin hardening on the interior lower side, opposite to lumpectomy which I am thinking is from radiation. I have Fibromyalgia and chronic fatigue so nordic walking is out of the question for me, I hope there is some gentle exercise like Tai Chi that they can recommend in the case of lymphatic blockage/Lymphodema. My areola is something else, twice the size which now has a mind of its own, whilst there is not an inverted situation, the shape directly to the left of it is inverted when it swells amd appears bruised. But I have not banged it. I still have my blue dye, that is upper exterior. The lumpectomy side (lower exterior) incision under boob all is well that side. It is the opposite side of boob that has become the problem. Maybe some healthy tissue got damaged. Who knows. 

Xxxx

This is interesting, nobody told me about this potential. As I am in pain and have tender areas I will wait for my appointment in case I have an infection and do more damage. But once resolved this is a handy video. Thank you xx

Hello Mrs Cor10 Hope you are still managing and things haven’t got worse. Good luck for tomorrow with your appointment. 

Hi bobof , appointment today was managed by a condescending and rude lady consultant. I know they have all the knowledge but we don't! After composing herself she reprimanded me for going through the doctor and not ringing breast clinic. Whilst this makes sense, I do recall, vaguely i might add, that if there is an issue to go through the doctor for 2WW referral. I had been discharged following my 6 week post RT check, so I went through the Dr. The tone, no empathy or compassion! I told my story whilst she was looking down shaking her head. When I finished she looked up and said "all that is normal recovery". I just burst into tears, her manner was overwhelming, I felt a fool and was made to feel like u had done something wrong! She took one look at the breast and said lymphatic blockage. "I need to massage it and take painkillers". She then said "you will never be the person you was before and the road of recovery is at list 12 months when your ribs have been fried". I couldn't wait to get out of the room! Humiliated, deflated and mortified! Nobody, not even textbooks tell of this problem, she wanted to know why I didn't know. I told her Nobody told me, I have been on my own practically the whole way through with no support. Not one medical person has asked even if I am ok! As I was leaving she said you were due a check up at 6 months, I can count this appointment as that! Dumbfounded. 

Thank you for taking the time to ask. Very much appreciated xx

I’m so sorry you had such an unsympathetic person seeing you, Mrs Cor10 , I too hadn’t been told early on about the length of time that radiotherapy recovery would take, I was told in the end-of-treatment appointment that it would be at least a year to 18 months. I’m just over a year now and the stiffness and tightness is not really eased much, I’m massaging and stretching daily as advised and am lucky in that in this area we have a new ‘late effects’ clinic, which I’ve referred myself to. They are funded for 3 years by Macmillan and apparently use a holistic approach to all he post-treatment issues that you get, and refer appropriately if needed. The ‘Bosom Pals’ group that I now have access to,  recently had a talk by one of the four specialists there, they are all well qualified post radiographer specialists. It was after that I was able to self refer to them. 

I hope now you’ve been able to think about that appointment, you can address the ongoing problems you have and yes, massaging and stretching apparently needs to continue long term and maybe for ever, as you will need that shoulder movement for (example) blow drying hair, reaching cupboards etc. 

rest assured that those of us who’ve had radiotherapy do understand! 

Hugs xxx

Hi Mrs Cor10 , what an upsetting and unhelpful response from the consultant. Sorry you’ve had such an unsatisfactory experience. 
I wonder if your GP would refer you to the lympheodema service? That’s where mine was diagnosed, my referral came from my post rads oncology appointment when I’d asked why the breast was bigger, the skin different and the pitting you’ve described so well. The specialist nurse at the clinic was lovely, and gave lots of helpful advice including more supportive bras, showed me basic masssge (which I found difficult) and recommended specific exercise. I’m sure they could advise re appropriate exercise of a gentle nature as you’ve the added complication of other pre existing conditions. 
Love and hugs, HFxx

Am so sorry you have had such a horrible expereince. I think sometimes people forget how vulnerable we feel. Firstly, although awful, thank goodness it's 'only' lymphatic blockage. Do you have a number for your breast care nurses or else you should be able to contact the oncologist's secretary and ask for a referral either for scar therapy or lymphoedema treatment to help resolve the diagnosed blockage? I think it will be quite challenging to manage on your own as, in my experience, they had to use quite a lot of pressure in specific points to ease the problems. Alternatively, do you have a local hospice? they often have self-referral options and might have somebody there that can help you? You really should see somebody to help you with this. The scar therapist I see recommended Aveeno skin relief oil for massage and also using a dermoroller (I got one from superdrug) to keep in the fridge and use on the blocked areas (she has said ice can help). However, you should get some guidance about where and how to do the massage. 

I am really sorry you had such a horrible experience - I always feel sad for people like that - what must they be like as a person to be so lacking in compassion? I think Tai Chi sounds like a great way to get some exercise and movement. I really hope you can get some advice. Sending a hug x