So instead of the core needle biopsy they used a vacuum assisted biopsy for mine. Don’t know if that’s standard?? Basically they just put the needle in and then suck little samples out. Sounds horrid but it really was fine and they give you more anaesthetic than for the core needle one so nice and numb. Hopefully they will give you some info so you know what to expect. I was nervous about it but the consultant radiologist did it with some lovely nurses and they were really reassuring and talked me through everything x
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@woody2 congratulations on finishing kadcyla @kittykat88 sorry you have joined the gang, all of the ladies on here have tips and advice for you moving forward with tour treatment. It is hard going but you will get there and be positive x
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Did anyone’s nork change colour after radiotherapy?
Perky/naughty boob looks very tanned, she’s pealing a little/barely but, as someone who if I was any paler I’d be translucent (I’m like a newborn fish, if I walk in front of a lamp you can see my brain), it’s very odd to have a tanned nork and the rest of me looking like a Tim Burton character.
I’m hoping this skin sloughs/sloffs (can’t be arsed to look up the spelling today) asap. My exfoliating glove isn’t working quickly enough. I had x15 radiotherapy sessions (and still exhausted) so wondering if it’s that colour cos I had so many
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Hi @kittykat88 Welcome to the thread. There is so much help, love and guidance with a few laughs along the way. We will be here holding your hand.
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A change in colour could be to do with the radiotherapy. Do you have a helpline to call? Or the BCN nurses until 1 today 0808 800 6000.
Many people have used Flamigel RT that can be prescribed to help with redness etc after treatment.
I used Radiaderm R1 and R2 ( won from Dr Liz O’Riordan Instagram give away) I didn’t have any side effects with this.
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@sez Mine did get a little darker after radiotherapy but I used a lot of flamigel during and after radio, and it eventually went back to normal. It took a little while though.
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Hello and sorry you found yourself here, there is lovely place to ask and be sure that they we will answer all your questions and support you as well.
It’s tough journey but we all heroines fighting hard and will make it to with big win.
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Congrats on finishing chemo and for the MRI biopsy, was nightmare as it was two days after my first chemotherapy and the local anesthetiser was not enough so when they start vacuuming it’s hurt sooo much that I cried and scream while lying down.the doc said I can’t take the vaccin out but will add more local anesthetiser and was late as the pain was already kicking and had to take paracetamol to calm it down after.
The good news was my right breast does not have cancer.
Hope your experience will be nicer than mine.
Thank you, I couldn’t find flamigel anywhere and the hospital wouldn’t prescribe it so I used aloe vera gel and lotions. They kept it from drying out and kept my skin from irritation and that.
I was told the flamigel RT was for if my skin cracked or had a bad reaction and it was a treatment for as opposed to preventative from med. My skin was fine during so they wouldn’t prescribe it. And it’s still not bad, just looks suntanned.
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Oh that’s weird. My centre handed a tube to me when I came in for my mapping appointment and told me to start applying it from my first day of RT 2 or 3 times a day and for a couple of weeks afterwards.
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Mine too, but I’m being treated privately and think you are too? Could be different protocol I guess??
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I asked about it because people mentioned it here and they just said it’s to treat irrited skin not prevent it. Cost cutting I guess. All the Trusts are different. They told me although I was suffering mentally with having to administer daily filgrastim injections for seven days after each treatment (I could do it but the bone pain and my causing it by giving myself the injections messed me up) that I couldn’t go on pegfilgrastim, even though it was ONE injection after every cycle of chemo, cos it cost more (and “there’s a lot of paperwork and the trust rarely lets anyone have it even after all that, I’d essentially have to beg” my oncologist told me) so I’m sure it comes down to money. Sadly always does.
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Yes it does seem to be down to individual trusts. I’m in Wales and it wasn’t prescribed unless you needed it. I was lucky with no reaction during or just after radio. I had more issues later on due to tightening and stiffness in the area and needed physio.
From above: Long term side effects
You might find that the treatment area is permanently darker after your treatment has finished. This is a long term side effect but won’t harm you.
Iv’e had 12 radiotherapy still 3 to go. My skin is just starting to change colour breast is red under arm is tannned. I was given zerobase to apply 3 times a day x
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Yeah I couldn’t get the pegfilgrastim either at my first hospital because of cost. Those shots were awful and they made me feel worse having to do it over the 7 days.
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I ended up with a bit of PTSD from having to (in my head) give myself bone pain, really messed with my noggin. When you have so little control over other people/med staff putting toxic substances into your body, then giving us a small bit of control and it being the responsibility of it being a med that causes physical pain is a mind-f.
Then after surgery (which was almost two months later so I’d mentally tried to block that memory in order to get over that trauma) I had to inject something else for a month (can’t remember what the name was) and my mum had to do it to begin with for a couple of weeks because I just couldn’t cope psychologically to do it myself.
Once my brain realised those injections weren’t the same med and DIDN’T give me bone pain and I could make a disconnection I was able to adminster the rest myself.
They really should pay more attention to people’s mental state during the process and not just what we’re going through physically, it’s all connected and affects EVERYTHING.
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Totally agree with you @sez . Physical health and mental well being are all inter- related.
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@sez It would be amazing if there was more of a holistic view of cancer treatment that took into account both the mental and the physical because you can’t have one without the other. Some days, I can deal with anything and then other days my bucket is completely overflowing and the littlest thing will just tip me over the edge. Practically, I have no idea how that sort of thing would be implemented without a drastic overhaul of the whole NHS system but they could start with a bit more empathy towards patients who are clearly struggling.
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@sez @kartoffel @sms I wholeheartedly agree on the subject of whole person care and it is actually written into the NICE guidelines if you look at ‘psychological care in cancer services’. It just appears not to be happening in many places. In a former life before retirement I worked as a clinical psychologist in health services although not in cancer services specifically but in stroke and other cva and cardiac services, with colorectal surgeons and stoma care nurses, sometimes with individuals coming to terms with body changes, sheer stress and fatigue of treatment. Often I was working with the system to try and make it more people aware. Sadly I suspect that some of that funding has gradually been cut and sheer pressure of time means few enquiries are made about how service users are feeling. There’s also some evidence suggesting that staff who are more empathic may themselves suffer more stress. Several times over the months Ive been in the cancer care system I’ve been told to ensure I look after my mental health but not actually asked if I was ok! There is no doubt from my experience that seeing the whole person generally saves money and time, even if it takes time to ask. You uncover misunderstandings quickly, spot issues that need attention and generally recruit ‘the patient’ as one of the team who will help get the best possible outcome. Reading some of your experiences there are also the few ‘arrogant’ medics and others who just don’t belong in the service. I’m not sure how we improve things, but I do make a point, as tactfully as I can, to note when something wasn’t done well and to point out how it might have caused extra time/ cost to the service. Ladies we have a valid point and I hope we can feedback enough of what is done poorly and what is done well to make some impression. Id better stop there but its a subject close to my heart!
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