I very fortunately got good news. I am working both with the local NHS trust, who told me from the MRI it was either still cancer or scarring, they did not know which, and also a well known london hospital privately. It is interesting the difference in scans and communication etc.
The NHS did another biopsy from the ortiginal site (not the lymph nodes) as I was presenting as very anxious and scared - I was grateful for that. It showed no cancer cells in the original site.
The private London hospital did CT, CT PET and said it showed a complete metabolic response!
Phew!
So now I am into the same system as you all had / are having. Tests every 3 months.
For belt and braces, I am going to continue to have double care - the local NHS (aspects have nnot been amazing hence my need for belt and braces) and the private london hospital. I will feel a lot safer being checked by two teams and also having more tests than my local NHS wants to do.
It is a struggle I get - but tho we are all 'statistics', when it comes down to it, I don't want anything to be missed because of an assessment that statistically it probably would be ok, rather than having a test that shows 100% yes or no.
So, you must all remember that feeling of being able to breathe easy for the first time in 7-9 months.
Hi, is anyone, currently, receiving treatment for anal squamous cell cancer? I started with chemoradiation last Monday, 18 October. What a barrel of laughs that has turned out to be!! Perhaps the most humiliating aspect was on day one. After an armful of IV chemo, I went to radiology where two young men removed my knickers!!! I am 75 and I can't recall that happening for the last 23 years!
I am hoping that this intensive therapy will rid me of the lump, which feels like a golf ball, from my bum.
I have had so many scans that I must have the most photographed backside in the South of England!!
Best of luck to all you guys on a similar "journey" - whatever that overused word means!!
Hiya, just reading your post, I know how you feel about the radiotherapy, I was told before treatment began that to receive the radiotherapy my legs would be put in stirrups, well I contacted my cancer nurse and told her I would not be having the treatment! After talking to the hospital they reasurred me that would not happen, I only had to remove my trousers, pull my knickers down to the tattoo (just on the public bone) , that I could live with , the only time anyone saw my bum was when the consultant examined me and the skin nurse checked my skin thru radiotherapy when it started to burn, just ask is there any need to take your knickers off.
Hope you get on ok, it's been 3 years now since my treatment, but I found this group a godsend, don't think I could have managed without the lovely ladies on here.
Any questions you have ask us on here, we all went thru anal squamous cell treatment,
I love your sense of humor! Most of us in this group are around 4 years out. Susannah recently completed treatment. I hope it goes quickly for you. Let us know if you have any questions or issues that we might be able to help you with.
Keep that sense of humour! And look forward to ringing the bell at the end of your radiotheraly - if they have one in your radiotherapy hospital.
This thread I found super helpful - and comforting.
Some practical stuff - it does get very sore, around weeks 3 - 5 (for me it was week 4 1/2) due to radiotherapy burns. So consider peeing in the bath with cold water (not kidding, a life saver!).
I took comfort in friendships and famly, walked daily and had 4 sets of family & friends look after me a week each - which was needed weeks 4 and 5 of treatment and two weeks after treatment.
And rest, take naps, rest and treat yourself really well.
What I found compforting was that almost everyone gets through this, and it is lovely to see one by one the folks on this thread getting to initial complete response then signed off.
I bet you remember what getting the first 3 month scan results felt like, well, that's tomorrow...
This thread has once again been a comfort thank you.
I was lucky and got a complete metabolic response in August (tumour 16 mm and 2 lymph nodes 11.. and 9mm) after a bumpy ride. So lucky.
I am working with 2 hospitals - the NHS and for belt and braces a private one (did not fully trust NHS in part due to my experience with them sadly, hence also going to a very well known private hospital too, for belt and braces check ups) for follow ups.
I meet the oncologist tomorrow afternoon in London for first 3 month post cancer gone scan result.
I have spent the last hour re-reading this thread, and thank goodness for all of you. Talked me out of doing google searches which would not have been a good idea! Instead, felt companionship and comfort here. Thank you.
Fingers crossed for tomorrow.
I will sleep better for re-reading your posts, sleep well all
it was all clear in November for the first 3 month folllow up which was amazing
i have had additional life bumps - thyroid showed a hot spot back in March - a by product of being scanned! With covid beds and operations were seriously delayed (was due NHS pre august but it did not happen) so I went private in November - good choice - and had half the thyroid out, which was cancer. All gone no need for more treatment just follow up scans and blood tests
i also had a small bcc - skin cancer - removed in July - getting the original anal cancer diagnosis put me on my toes to be very proactive about health, so did a ton of tests to 'sweep' out any other problems and found that teeny one
I am usually v healthy - active, lift weights, long walks, good diet and all the rest so 2021 has been a pretty big shock and life change to me!
Then in Nov surgeon was not totally sure about a small 'rough patch' on physical exam - he wanted to check it 6 week wait for general anaesthetic biopsy 23rd dec and I got the super lucky news it was just scar tissue
so riding the ups and downs of cancer, uncertainty and (glad of it) surgeons double checking which is worrying but good they do
with those 2 extra operations in Nov and dec, the next 3 months set of check ups have come round super fast, so scans again tomorrow and next week, with results 8th feb and - blimey a month wait- 24 the feb
The fear is reduced from the completely confined in a tunnel, only way through is through fear that existed during treatment and for me until the august post scans - no disease - and the first set of post 3 month scans in November- continue to be all clear I think I only really relaxed in November from realising the anal cancer was gone then went straight into a thyroid op and a cancer diagnosis for that (again all gone) so the calm was short!
I can manage it better but as you can see, not fully, as I came on here 4am to take comfort again from this thread, prior to my CT scan tomorrow and MRI next week
time for a cheeky middle of the night snack, warm milk and back to sleep
these challenges we face help us know ourselves, don't they?
Goodness Susannah, you've been through a lot in such a short amount of time. I had a very large benign growth on one side of my thyroid a few years prior to diagnosis. And I've had multiple BCC & one SSC over the past 10 years. The worse was on the SCC on my nose which has caused me to look a bit like WC Fields. Now I keep getting cysts on my face. I've never had blemishes until the last year and it's not fun at any age, but a bit awkward at age 71. And they take weeks to clear up. I have had rosacea for years, but it's mostly reddish in a very small area on one cheek and no blemishes. I think the cysts must be related to damage from chemo.
I'm a member of another support group (a private group on Facebook). It is a very different experience than here. I was fortunate to discover the UK site when a small group of us were at similar stages of treatment. It was wonderful to have that support and those ladies will always have a special place in my heart. The Facebook group is quite large with members in Australia, the UK and the US. It has really made me count my blessings, but it also makes the fear of metastasis sit on my shoulder. I seem to be addicted to it though as I check it several times throughout the day. Although my digestive system is a mess from treatment (I stay close to my bathroom) and the bum skin is so frail and often rips, I feel very blessed to have made it thus far at over 4 years out.
I'll be thinking of you and sending healing strength and healing energy your way.
