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cancer treatment and lack of follow up

(10 Posts)
yeragain65 Fri 10-Jan-20 15:01:51

dec 2016 I had major surgery for colon cancer, with the recommendation from the surgeon for follow up colonoscopies for "suspicious lesions"(in hard copy)

11 cycles of chemotherapy until august 2017, followed I assumed by the necessary further procedures to detect any remaining cancer.

despite many oncology appointments and the usual scans and despite us as a family requested the follow up procedures our concerns were dismissed or ignored.

by 2018 still no follow up despite requests, even contacting the cancer co-ordinator line many times asking what was happening ,why hadn't I had the further procedures, there was never any conclusive answer.
receiving the usual answer of "we done know"
even admitting that I had "fallen through the net"

by 2019, I was feeling poorly so had to make the decision to do the government bowel screening programme which not surprisingly showed abnormal results.

1st colonoscopy was done, only to be referred to a more specialist surgeon.
2nd colonoscopy was done, (which he asked to film as it was large)
3rd colonoscopy was done to see if the cancer had gone into the bowel, all this in a matter of weeks, so I was feeling totally exhausted and emotionally drained.

yet I have asked so many times for someone, anyone ,to tell me why the original surgeons recommendations in 2016 hadn't been followed through as he instructed.

now in 2020, no one is informing me of why I endured these 3 colonoscopies in 2019, when they should have been done in 2017, when perhaps the cancer hadn't been so large.

not sure what I am asking here, or am I being obsessive with my cancer stress.

Namsnanny Fri 10-Jan-20 15:34:34

I remember other posts you made on the subject, and no I do t think you are obsessing, just getting inconclusive answers.

Go back to your original posts as I remember lots of agencies were recommended to go for help, but I do t remember them myself.

Can anyone in your family contact them and get a representative to follow up all your queries?
As I'm sure you must be feeling quite worn out by now.

Good luck

Missfoodlove Fri 10-Jan-20 16:04:12

Not being obsessive! I think you have slipped through the net and the powers that be should be most concerned!
I would ask for access to your medical notes, recommendations should be on your records.
From here depending on your findings you can confront the hospital and possibly seek legal advice.
So sorry you’re having to go through this.

Xxjanexx Fri 10-Jan-20 16:17:21

So sorry to hear this.

This is your life there playing with...get on the phone and demand a appointment...don’t let them fob you off.
Ring every day until you get one
Good luck.

GrannyLaine Fri 10-Jan-20 16:28:13

yeragain65 the most effective way to get your questions answered is to contact the Patient Advice and Liaison Service (PALS) at your hospital. Tell them what you have told us and tell them how upset you are that you didn't get the follow up you expected. They will look into it for you and take action if something has been missed.

clementine Fri 10-Jan-20 17:03:51

Very good advice from all the above posters. The PALS should be able with your permission to access your notes and be able to see at what stage your colonoscopy was recommended and find out why in fact it wasn't done.

BlueBelle Sat 11-Jan-20 08:32:11

Definitely PALS they take up any query/complaint/problem

My friend had colon cancer, a part removed but didn’t need chemo She had follow up colonoscopies every 6 months for the first five years, now after 5 years I think it’s annually

You have it seems now had the colonoscopies albeit too late for your peace of mind and by you taking a different route

You haven’t said if there has been follow on surgery needed from the results of those 3 more recent colonoscopies? If the treatment is now on track but you feel you lost two years were lost that is what you need to ask PALs to uncover or even get a solicitor involved

H1954 Sat 11-Jan-20 08:38:11

Contact PALS, give them a full statement of what was done, what was supposed to be done and where you consider the failing are. They will conduct an internal investigation to get to the bottom of why "you slipped through the net".

But I sincerely wish you well, stay positive!

Hetty58 Sat 11-Jan-20 08:42:11

What has the GP said/done about all this? Maybe there's been a misunderstanding or admin error?

Get copies of your medical records, from the GP and hospital, for the relevant period. All you have to do is complete a form. They have 30 days to comply.

yeragain65 Sat 11-Jan-20 09:54:10

thank you all for helpful replies.

a surprising change of events yesterday .

this despite asking the question re the surgeons letter re colonoscopy from 2016, and repeated requests for follow up, all to no avail.
I received a totally unexpected phone call from the oncologist yesterday.....Friday.....

in total frustration the previous day I told the oncologists secretary that not only had I not received my results from the November 2019 scan but another had been booked (no information as to why) for January.

only to be informed that they had no idea as to why a "different" scan had been booked, or why.
in total frustration I said I am on the verge of making an official complaint.

…..apologies if I am rambling a little, just trying to get this into chronological order.....

so to the oncologist's phone call, never received it before.

I asked why a another scan had been booked?
the answer idea...
I asked, do you have the report re the 3 procedures in 2019?
the answer idea....
I explained that the surgeon detailed the need for such procedures in 2016.

the answer was …..we knew it had spread, and I still had the cancer rectal polyp which should have been investigated in at least 2017.

I explained that,i didn't have it anymore as it had luckily been removed in 2019 by the colonoscopies ....she had no idea....

so why the scan in January?
eventually the answer came to check up on the colon again , presumably booked by the colonoscopy department.

so basically one department had no idea what the other is doing.
prior to the 1st colonoscopy I explained that I had lung nodules and previous surgery, but was told they didn't have access to my medical history.

I replied I am giving you permission to obtain the notes, but they weren't able to!

so an appointment is for this Tuesday to discuss this fully.
I said I will take the results of the 3 colonoscopies.
maybe I will get closure finally.