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Refused Follow Up Scans

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Lu-Lu
Refused Follow Up Scans

Hi Ladies,

Am after some advice....I completed treatment at the begining of March. I was told that my team dont offer follow up MRI/CT/PET scans to confirm treatment sucess as statistically it doesn't improve life expectancy despite its wide use by many other hospitals.

I accepted this and do trust my team however at the 'Lets Meet' every other lady I met had been given a scan and it did seem to offer them some peace of mind. 

At the very least I wanted a base line scan so that should any reoccurance appear they would have something to compare against post treatment. The only scans ive had were staging scans pre radical hysterectomy (which i paid for privately) and positioning CT scan during Brachy.

I have since pushed back on this and despite my onc telling me verbally over the phone that she would give me one, I have now rec'd a letter refusing and re-stating their original position. The letter also says that they have in fact dont a CT scan post treatment (positioning scan during brachy) and it is this that they would use as a baseline scan if necessary. 

The trouble is that before the start of treatment my clinical onc told me that any scans taken within 6mths of treatment are useless due to the amount of fresh scar tissue. So how then can they use my Brachy scan as a baseline scan as this was 'during' treatment! 

This seems to be backed up by the ladies I spoke with at Lets Meet as most had to wait some months until their scarring had settled before they received their scans.

Although 'most' reoccurance is picked up through pelvic exams, not all are and whilst I understand proceedures are laid down on the basis of proven statistics, I was under the impression that they are supposed to treat the individual, not the statistic. Afterall aren't they supposed to treat both the phyiscal and mental effects of cancer? 

I am left feeling that I am not getting the same access to treatment as other cc patients and this cannot be right...right??

Any advice appreciated. 

Lu.x

19.10.11 Smear 1.11.11 Mild Dysk 9.11.11 Colpos+Biops (Poss CIN 2/3) 21.11.11 Diagnosed CC 22.11.11 MRI 23.11.11 Stage 2A Diag 13.12.12 Rad Hyst + 39 LN Removed 21.12.12 Pathology - Lymph Nodes involved 10.1.12 5wks Chem/Rad 20.6.12 Clear! 12.9.12 Clear!

katie63

hi lu

my aftercare is a physical check up every six months, they told me this the day i got diagnosed cc 1b1. i dont know whether they have different aftercare depending on what stage we are diagnosed??

i opted for chemoradiation as i had a choice between that or radical hysterectomy.  sorry i cant be of anymore help, but i do know if i had the slightest symptom of anything untoward i would be able to phone my cn and get in to see the consultant asap, and in which case if they had cause for concern i would have a scan.

 

 

LouiseUK

Hi Lu

I wasn't offered a scan routinely but a year after treatment I found a little hard lump in my stomach just under the skin and this immediately led to a CT scan which thankfully was clear. If you have any kind of worrying symptoms they should act straight away and it is incredibly reassuring at the time. Do bear in mind though  that the reassurance isn't necessarily long lasting - I think to a degree the anxiety about recurrnace remains. I feel it less now two years on - bit it is still there.

Hope you get a resolution soon,

lots of love

Louise

Laser treatment 95/96 for mild to moderate CIN. All clear smears until March 2010 then diagnosed CIN3. Biopsy showed cc 1b2 grade 3, RHND on 9/6/10, 16 lymph nodes removed. Given the all clear on 22/6/10 - no further treatment!! :D

nattyc16

Hi Lu-Lu

I completed my treatment at the end of June (RH, chemorad) I was given an MRI scan the end of Sept at my first three month check up. Initially i was glad that I had been offered a scan as i thought it would give me some peace of mind, unfortunately the results showed something on my left side which they cannot tell if this is scar tissue or another tumour. I went for my results feeling quite optimistic and then when i was told this i was really upset again as all me or any of us want to hear is that we are all clear and because of this doubt they could not say that to me. When the consutant saw how upset I was she said this is why they dont like to scan so soon after treatment as there is a lot of scar tissue and they cannot differentiate between that or something more sinister. I do not know why they decided to give me a scan as I had not requested one, I guess each doctor works slightly diffferently. Given my time again I wish I hadnt had one to be honest as it has caused more uncertainty and fear (as if we dont have enough already) but had I not been offered one I would feel like you are now (theres no easy answer i guess). There is also added risk with each scan of more radiation damage so again this is good reason not to have one so soon after treatment. I now have to wait a very long three months when they will give me a PET scan to see if there has been any changes this again will be exposing me to more radiation and axiety. From your post it does seem that my situation is common from the other ladies you have spoken to and I hope it does turn out to be scar tissue. I hope this has helped you a little and I hope your check up goes well.

Love Nat xxx

Feb 2012 Diagnosed 1b1 cc aged 22
March 2012 Radical hysterectomy positive lymph nodes
May 2012 5 weeks chemoradiation
Sept 2012 3 month check up unclear MRI awaiting PET scan in three months.

Toca

Hi I was also really concerned I wasn't offered an MRI at my check up since so many other woman were. It was something I planned to ask about at my next appointment but your post has answered my questions and given justification to it. I think we all have the constant worry of reoccurrence and have to agree even having a scan would only give short lived reassurance. I do agree though that the hospital should be taking care of both physical and mental health so if not having one is causing a lot of concern they should offer you one. Great suggestion about ask the expert x

Smear - April '11 Biopsy - June '11 Diagnosed CC stage 1B age 28 LLETZ - July 11 MRI - Aug 11 Surgery - Lymph node removal and Second LLETZ - Sept '11 No spread found, no lymph node involvement Clear smear - Feb 2012

BusyBug
BusyBug's picture

I did have an MRI at 3 months and 1 year post treatment. However, my oncologist told me that any reoccurence would most likely be picked up at the check-up internal. He also said that if they were at all concerned I would be sent for an MRI...

Sept '10 - diagnosed 2B CC adenocarcinoma Chemoradiation/brachy - completed 22/12/10 Confirmed radiation damage to bowel 7/11 1 year all clear - 12/11 Diagnosed with bile acid malapsorption due to radiotherapy - 12/11 2 year NED 11/12

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