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I have had the all clear for almost six months now after r chop for non Hodgkins. Had Petscan In July or August 2017. In the last six months including yesterday I have had 3 ultascans (2 for same time one private one nhs) . The first 2 both said what I felt in my chest was scar tissue. Last night radiologist said during the ultrasound he could see scar tissue but also a bit of thickening. The thickening is the question mark. I was advised to do a biopsy. My oncologist felt everything she could feel felt normal so i reckon their being ultra cautious and trying to put my mind at rest so I dont keep coming back every other.month feels like lol.
Has anyone else had any experience of this /scar tissue or panics after treatment that turned out to be okay. I thought everything would be esolved last night but now gotta wait another week yo have biopsy and results and try not to go crazy worrying.
Really appreciate your response as can'
Seem to find anything of effects after treatment.
Hi Alice, as I said on your other post:.....
I have bad scar tissue in my neck where my brick sized growth and big biopsy was done.. Depending on me having a good nights sleep, feeling run down or having a bug, the size of this scan tissue changes....... well its doesn't, its just what my mind is saying at different times of the week.
The post treatment journey can actually be as hard as the chemo journey itself :(
Have a look at this paper by Dr Peter Harvey - Life after Treatment (link) as it has helped me in my post treatment life ((hugs)) and have a great weekend. Got one of the granddaughters coming round today - making happy memories :) xx
Mike - living my new life and trying to make a difference
'Some journeys take us far from home. Some adventures lead us to our destiny' C. S. Lewis
SCT NHL T Cell Community Champion
Hi Alice do read that paper its helped lots of people over the years, 1,000's I would think. The challenge is regaining confidence in your body and your judgement as to whats happening to it, each of us deal with the worry of relapse in different ways but I can tell you with time it does drift away, I have not thought about it for years. Remember you were stage one so it was caught really early before it developed into something more challenging, have you thought about counselling as it might help if the worry is playing on your mind so much.
If I remember your were planning your honeymoon for this year, now thats something to distract your worries.
My scar tissue was large and took years to reduce and I often referred to it shrinking from being a mars bar to a mini mars treat, with time your scar tissue will reduce too hopefully.
we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
Thank you both. Appreciate your kind words. Now I think I have shingles. Saw a pharmacist today and she said chrmo in uour system for a year after so could if your bit low immune wise pick up shingles. I'e got the rash. It can also be connected to swelling of lymph nodes and lumpiness so maybe this is causing the original issue with lumpiness. Will book with my doc on Monday. Anyone experience with shingles at all?
No I never had shingles but I know others who have and yes your immune system will be fragile for a good time
Alice I had shingles just before my final dose of rchop, came out in the rash and on the Friday, went to out of hours on Saturday morning and got the anti viral drug straight away, if you do have shingles then its important you start the treatment asap, so if you have access to an out of hours service use it.
Re chemo in your body, it actually takes 2 to 3 years depending o dosage to rid the body completely, And yes the shingles could be causing your raised nodes.
Thank you both
I'e never had shingles before and still not certain until i see a doctor. I got some calamine lotion tonight to soothe and will take anti viral I have at home till I can get to the doctors on Monday
Got my doctors appointment this morning. Rang my specialist nurse where i had my chemo treatment to ask for advice and they seem to know nothing. Said shingles does not cause swelling of lymph nodes even though I've read everywhere it can. All nurses on the chemo ward were angels but sadly my specialist nurse has been absolutely useless the whole time from diagnosis to remission shes not a personable person. Even told me off one time for phoning in my first few weeks of chemo. I really hope others have had much better experiences with their nurses as it's hard enough going through this. Should have my biopsy tomorrow. I think this shingles is getting bit better it' Still quite painful though.i know they are others worse off than me so I shouldn'
Complain But just want to get back to normal.
Wish you all positive vibes
Hi Alice, good you have a GP appointment........ costs nothing to be pleasant :( and would make their working life much better but I have had some amazing medical support so big thumbs up from me.
I also have a GP appointment tonight. My amazing GP of 26+ years has hung up his stethoscope and away to put his feet up :( so I have to go see my new GP to introduce myself and get some ground rules sorted ;)
But I will be advising my old GP during the summer as he is renovating a croft up North and he knows that I can advise him as I used to teach Construction.
Good you can still keep in touch with your doctor. I was meant to have my biopsy today but they turned me away cause of my shingles. I think their clearing up and not spread anymore and I used a bandage as an extra precaution. If anyone reads this save yourself the stress and don't go with shingles. The nurse was very rude. I have to wait a week and rebook.
I found out today when I tried to rebook for biopsy they won' let.me until shingles has all cleared up. On the positive side I have nhs ultrasound next week with my consultant who first diagnosed me its a second opinion so always helpful. She works at this private hospital and nhs and has been really kind to me in helping me not just with the cancer but fertility treatment too. So maybe she might suggest a biopsy at the appointment as she knows how stressed I've been. Got to see.my gorgeous nephew today which was really nice
Just a quick update I had my ultrasound this week all clear. As I saw my doctor who I been seeing privately she did the biopsy she is so lovely knows I worry im seeing her on monday gor results but sure everything is fine and hopefully i can put this to bed for some time.
I also bumped into another lady who been on chemo ward same time as time battling breast cancer. We hadn' spoken at the time. She told me she recognised me and asked about my wedding. I think this was cause my mum was showing he whole ward pictures of my wedding at the time as i got married in between chemo. It did seem to cheer up other patients which was nice. Any way the lady said she was probably looking miserable at the time and wore a scarf and then I realised who it was. She told me she finished chemo in June had 3 ops radiotherapy and was doing really well. I was delighted tp hear she was doing so well and see her smile . There is hope for everyone take care.
Hi Alice, our cancer journeys can be so hard and stressful but you will be amazed as to the opportunities that will be presented to you to use your journey story to be an encouragement to others.
When we start our journey we only see a dark black tunnel with no light, but as time goes on we start to see that small speck of light that starts to get bigger as treatment progresses then before we know it we are looking behind us back at the tunnel.
Thank you. I got my biopsy results yesterday and it' all clear yeh. I gave my doctor a big hug she is really lovely. Now I can just plan for my honeymoon got to have a couple of injections
Take care all
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