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I wonder if I can ask you a question that is of concern to me....On 30th March I was booked in to have my 'mole like' black area in the neck of my anal canal biopsied...The Surgeon excised whay=t he thought was ALL of the area plus a bit all around in a bid to get rid of it all.
In the report that I was given back after the op..it says; 'although they looked grossly innocent, on histopathology, there were findings of changes which are usually associated and known as [AIN]3', But more importantly an area of irregular down growths which were interpretated by two Consultant Histopaths, to be early invasive, poorly-differentiated Squamous Cell Carcinoma....
The letter goes on to say that I must now have CT/MRI scans and that another surgeon will plan with me my further EUA and wider excisional biopsy. etc.
Well I didn't get to discuass this with the Surgeon not until the day of my second op! During this discussion it was explained that I would have this done --encircling the first wound [which was now just five week old and healing nicely] Also that there was a new area of thickness that had shown up on the scan that would also need a biopsy....After the op she would come and discuss the scans and what was done! This never happened....I do understand that they are very busy! But I was left with questions and had to email her with these....
During the next conversation over the phone [still hadn't seen her], I was told that when the biopsy results came back I would get an appointment to discuss where/what would be my next treatment. I was told that everything had to go to a Specialist MDT meeting for discussion, and I would be told of the outcome.
I received a letter today just a couple of lines long saying ---Very ppleased to tell you that my case was discussed at SMDT? The wider excision shows a clear margin which is reassuring. Nothing further needs to be done and will see you in follow-up in six months time.
I feel like jumping over the moon ......BUT........a million questions keep going over in my mind, not least of all 'I wonder why I still haven't had the chance to 'sit down' with her and discuss all of the ins and outs? I know that she has ended the two liner with 'any questions get in touch....but it just doesn't feel right!
What happened to the AIN3 and what about the squamous cell? Why didn't it need any chemo/radiotherapy...Is it going to come back?
Worst of all I can that my partner is looking at me and saying 'she knows best and wouldn't be saying this/that...in other words what am I bleeting on about!
Thanks for getting in touch. It’s natural to have questions about everything that’s happened. We ask questions to understand what we’ve been through and make sense of it all.
It sounds like the AIN3 and squamous cell carcinoma (SCC) were completely removed during your second surgery. The initial pathology report advised that the SCC was ‘early invasive’ so that might be why further treatment, like chemo/radiotherapy wasn’t needed. Only your consultant can answer these questions so we’d encourage you to get in touch with them.
Yes, unfortunately AIN3 and SCC can come back. Your consultant and hospital team will have carefully planned your treatment to successfully remove the AIN3/SCC and reduce the risk of it coming back. Worrying about cancer coming back is normal. It could be helpful to talk to your consultant about what your individual risk of recurrence is as it may not be as negative as you fear.
I hope this helps to point you in the right direction. You’re not bleeting on, ask the questions you need to and hopefully that will put your mind at rest.
We often find we can help people more by speaking with them directly on the phone. You can call free on 0808 808 0000, Monday to Friday, 9am-8pm, and ask to talk to a Macmillan Information Nurse Specialist who will be happy to provide you with information and support.
Please don’t hesitate to get back in touch if we can be of any further help. Best wishes, Karla (Macmillan Cancer Information Nurse).
Thank you so much for answering my queries. I have today asked the Surgeon's secretary to make me an appointment so that I might actually sit a talk to her face to face and ask her about my ops/scans/diagnosis/treatment...and fears of re-occurrence.
I would also like to know how/why the SMDT made their decisions as again I feel that I was not involved with something that definitely affects my health. Would it be normal for the patient to be able to be privy to the information discussed at these meetings?
I would hate to be 'just left' if there is something else that could have/should have been done. In an earlier letter/inquiry you can see that I asked Sanjya about the two aspects [AIN3'--SCC] and he said that while the AIN3' could be got rid of by surgery, it was unlikely to work for the SCC as this was pioneer surgery?
Thank you very much for your help, I'm sure that I will be ringing you up soon...
I wrote to you and also Sanjaya [who is apparently just gone on holiday] so I don't know if you can read the note that I sent to him..It was concerning the same problem that I have already mentioned to you above...With the added knowledge that since then I have read an article that was pointed out by Sanjaya regarding 'The London Cancer ICS Anal Cancer MDT the article is about 40/50 pages long so one need to pick out what is appropriate to them selves. But the whole thing is very interesting.
I read about all of the things that 'should' happen before/during and after diagnosis....Needless to say mine never went anything like that! What I'm asking for now ---an appointment with my surgeon/ the MDT or appropriate bodies to discuss what has been done and forward expectations...What I've got is a piece of paper saying basically that I'm fine --that the excision took away ? with a clearance and that she doesn't need to see me again until six months!!
No letter even to give a full explanation about my scans/the MDT meetings/the second biopsies or anything else at all!
I've sent an email on Monday asking for another appointment [to surgeons secretary] --the reply was that she would 'ask for an earlier one' and I've not heard anything since?
In the event of not getting an appointment what should i do?
I am sorry you are no nearer getting the opportunity to ask questions and get clarity about your diagnosis and treatment.
If you have not had an appointment we would suggest you contact the hospital PALS team, where you had your treatment. They can act as a liaison and find out what is happening with your appointment.
Please don’t hesitate to get back in touch if you need anything
Kate (Macmillan Information Nurse Specialist)
Thank you for your reply. I have today had a reply letter from the the DG-General Surgery Consultation Clinic.
This has offered me an appointment for the 9th June...which will be SIX weeks from my op date. I think that this is to long to wait and wonder what your thoughts are?
Having read through several pages of Dr Sanjaya's recommendation of The London Guidelines......I think that I should have been given more information also my GP should have had updated reports from the hospital? I'm going to try and see my GP next week to see if indeed he has had these and if he can help me through this stress.
Thanks for getting back in touch. I’m glad you’ve heard from your consultant and have an appointment booked. Waiting a few weeks after surgery to have a follow up appointment isn’t unusual, they’re often keen to give you some time to heal.
We can’t say whether it’s too long to wait as we’re not directly involved in your care. As you’ve got concerns, we’d recommend calling the consultant’s secretary to talk about this. You could also consider contacting PALS at the hospital if the secretary can’t help.
It could be helpful to discuss the London Guidelines information Sanjaya provided with your consultant. They’ll be able to explain why your hospital team recommended your specific treatment.
Talking to your GP will be helpful, especially if you’re feeling stressed. They’ll be able to point you in the direction of some support. You can also see what support is available locally in our ‘in your area’ search.
I hope this helps. Don’t hesitate to get back in touch if we can do anything. Best wishes, Karla (Macmillan Cancer Information Nurse).
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