Treatment reactions

Hello from one cat to another. Your consultant needs to refer you to someone who CAN sort it out. This is likely out of his own field (oncology) but there must be another specialty that can look into this and investigate further, either by taking a biopsy of the "bad" area, scanning, blood tests, whatever it takes. Since you are doing it privately, you don't even need his referral (although it would have helped if he did that, because at the moment I am unsure which specialty to point you at) and can make your own choice. 

It may not be an infection, but the area is definitely inflamed for one reason or another. Leaving you with no answers and no treatment won't do. For now, though, try the old breast-feeding trick -- cabbage leaves. Hopefully it will help a little, in any case it will do no harm. If I think of anything else I will post again.

Hi,

It could be cellulitus or lymphoedema.Your BC nurse will have more experience of skin side effects well worth contacting your team,they are the ones who have likely "seen" it all.

   Good luck with your treatment

Really angry to hear your treatment. Yes get another specialist as suggested and complain to your private healthcare provider about your treatment with this man. It is unacceptable, I would say massive hugs but fear it’ll be too painful xxxx

Thank you

oh its crazy as the same consultant as the treatment under NHS and he saw the state of it months and months ago and said nothing...now I have gone private his reaction was oh my god you have had a serious & severe reaction to surgery and radiotherapy. Which made me quite mad as why couldn't he have ack that under the NHS. They scanned me and said they cant see any fluid or anything but the boob is as inflamed and angry inside as it is on the outside. 

I did miss out that he has told me I have lymphoedema on the rights side of my breast (big boobs) but the pain, redness inflamed is everywhere.

The BN under NHS were horrible, treated me like I was mad categorically saying you don't have infections perhaps its covid..whilst I am seating, feeling horrible to then swab it whilst muttering it will come back negative to the phone call 4 days later saying oops sorry you were right its infected and throwing antibiotics at me. One time they said I needed IV antibiotics but that would mean coming in and they said they wouldn't do that so just carrying on without treatment. Now I'm no nurse but an infection is bad and surely needed to be treated.

I have never met my NHS oncologist, they have been in the next room whilst the nurse ran back and fourth but refused to actually come in...

Bloody hell.  !!!     That nurse who dismissed you, and the oncologist who refused to see you in person should be whipped in the town square, metaphorically speaking. You need a new team, different people who will not have the kind of prejudice and pre-conceived ideas that would block them from being willing or able to see what is really going on. What are your options? If you are in one of the cities, possibly you could ask to be referred to a different hospital. If you are in one of the rural areas that might be difficult. In any case, I would sit and write a letter to the Chief Executive of that NHS trust, to highlight the issues, copy to PALS if they have that. That may result in people actually starting to do their jobs, but I wouldn't be surprised if you said that by now you have lost trust in that hospital.

I am not sure how to go about asking to be referred to another hospital, whether it needs to start at the current one or at the GP, so I hope you are able to find out. If you prefer to continue to go private, you don't have to continue with the same consultant. You are a paying customer and should be able to choose who  you see. I know that even on the NHS you can request a transfer, I did that at some point (not breast cancer related) and it was accepted without issues.

Please let me know if any of this is giving you any direction. From what you said just now, it is not just an inflamation but could possibly be a recurring infection. Stiffer antibiotics may be called for. 

One other thing comes to mind. I use vitamin and mineral supplements. There are different schools of thought about this, so where I don't know the person, such as with you, I would only ever suggest going with multi-vitamins as these normally are low dose. At the moment I am using a liquid form of one such multi-vitamin, as pills are difficult to swallow at the moment. If you think this is something you would like to give a go to, I can tell you what I am using so you can look into it.

I am really sorry I don't have anything better up my sleeve, we could do with a magic wand right now, so some of what I am suggesting may be clutching at straws. I will however come back here if I think of any more "straws" until you find a medical team who will actually look after you properly.

Owww my goodness, this is terrible.....

If you have an infection surely you 'need' antibiotics! If they won't let you go in/or you don't want to go in and have them given intravenously ...... then surely, surely this same antibiotic is available in tablet form.  

On top of this I believe IV are given to get into system quicker - maybe they wanted a 'slow release' - however all this said ..... if you aren't having this then ..... you need the tablet form (maybe they do a slow release tablet - although they space medications out to give a constant flow (can't think of the right word).  With 'no' antibiotic tablets then this is putting your body under far more stress and working harder to recover as it not only needs to work on healing it is has the infection to contend with.

On the same note, I would honestly keep a firm eye on this, if you have redness 'draw' a line around the edge of redness - to see if it is getting worse or subsiding.  If it contains to be inflamed you need to take action - as you could end up on the road of sepsis and this is urgent.

You should either phone for a home doctor visit (this way the will prescribe antibiotics - the trouble here though is will they know 'which ones' are the best - as there are two types 'broad' spectrum (covers most things and body) or 'narrow' spectrum (that is directed at the problem) <<< I would think you would be wanting this type, however, I am 'not' medically qualified, so you need to go with what they say and..... 'trust your own instinct' on what sounds and feels right.

I do think you need to take action as I don't think this is going away by itself and if it does it will take far longer with no treatment and add more stress on your body and you mentally too.

Please phone - even phone that department that told you 'no infection' then said there was infection - it may well be that the person you spoke to has absolutely 'no idea what they are taking about'.

Please don't suffer - you don't need to - the sooner you are getting treatment the sooner you will start to help!

I can understand the consultant saying doesn't know what to do - if this is caused from the radiotherapy treatment - for all we know you could of been given a strong dose (they are trying to shorten the amount of visits - so its a possiblltiy) - however........ an infection is an infection is an infection..... and needs antibiotics.

I'll stop now as I am repeating myself - I am just so sad and angry for you - you don't need this with everything else that is going on.

Sending gentle hugs x

Hi Hellcat

I would be a Hellcat too if I had to put up with what you describe! From what you say, I am not sure what kind of Consultant you saw today. I would be horrified if he was a consultant in oncological radiology!

I had radiation burns underboob myself, due to skin to skin burns and large cup size. Also burns in my lumpectomy area as I had been given extra booster doses to that area. After about three weeks post RT I was in agony, not nearly as long a time as you and not such an extensive area and I did not have infection.

I phoned the NHS helpline, was triaged by phone and then immediately referred to go straight in to my regional specialist cancer unit. They put non-stick dressings on the areas, told me to keep broken skin areas completely dry but to moisturise like hell the areas which hadn't broken down. They advised paracetamol plus ibuprophen every four hours for pain. I was sceptical whether these would do anything for such pain, but have to say that to my surprise they did actually help a great deal -don't know why I didn't think of taking them myself.

I was also advised to get an appointment with my GP practice nurse to change the dressings. The cancer unit also phoned my medical practice to tell them what kind of dressings to supply to me, as they are non-standard and i believe are expensive. My GP organised a prescription for the dressings and contacted the local pharmacy to make sure that they could get them for me.  Practice nurse was absolutely great and saw me twice a week for two or three weeks. She very carefully cleaned the areas, checked for signs of infection and removed the dead skin before redressing each time, plus she gave me extra supplies of the special dressings. 

I called my local cancer helpline to get linked into the above care. I don't know if you will have a number for your one, or not. Notwithstanding this, there is a National helpline for out of hours 8pm-8am. I don't think it matters that you saw a Consultant today. You are obviously in severe pain, possibly with a cellulitis from what you describe (I did work in the health system before I retired).

The National Helpline number is:0800 917 7711. I would call today. Use your local one if you have the number and if not, wait till 8.00pm and call the National line. Just been reading the list of things we are asked to call about and it includes:

• Uncontrolled pain
• Other concerning symptoms associated with your cancer treatment

You certainly tick these two boxes from what you say. Don't put off, phone them today. Tell us how you get on, as I am going to worry about you until I know you have been properly examined and treated.

All the best

WallyDugy