Newbie from the UK. Diagnosed with AIN iii this afternoon

I'm sorry to hear your news.  I chose to tell only the people closest to me when I was ready.  I was fortunate to be able to be off of work from the  time of my surgery to remove the growth until a few weeks following treatment.  Most people I work with do not know my diagnosis, they know I was off because I had a growth removed (they do not know from where) and it turned out to be malignant.  Most have been sympathetic and understanding without pressing for details. I wish you well.

I'm very sorry that your recent news has brought you to this site, but I hope we can help you and give you support.  I hope your upcoming CT scan will not show cancer.  As you probably already know, AIN refers to anal intraepithelial neoplasia, which simply means that there are abnormal cells in the anal canal or in the peri-anal area which have not progressed to a cancerous stage at the time of analysis.  There is really no way to know if these cells will eventually turn cancerous or not, but they should be monitored.  Some doctors go for a watch and wait protocol, doing frequent exams to assess whether or not the cells have changed.  Others may choose to treat the lesions surgically or with medications such as Imiquimod.  It's my understanding (and if I'm wrong, please someone correct me) that chemo/radiation is not done for cases of AIN.  Please let us know what your CT scan shows.  I will certainly be hoping that you'll get the best possible results. 

You are right, this is a great site for both info and support.  You can remain anonymous here.  All of our posters have been through this phase--waiting to find out what exactly it is you're dealing with.  We understand the stress and anxiety.  Come here any time to vent or ask questions--we'll be here for you.  I wish you all the best.   

K8M said:

CAT Results & UK NHS Administrative challenges

So I went for my CT scan results today......

 

Apparently my scan pictures had not been updated to the shared IT "Cloud" so the Multi Disciplinary team who were supposed to discuss my case, couldn't yet see the images.

 

I'm not sure how it works in the US, but in the UK, each separate hospital has a separate IT system for each dept. I started off at Lewisham (they have their own separate system for notes, separate for radiology, separate for surgical etc. etc.). I was today at Guys' (again separate systems - another history taken). They are now again saying it will be St Thomas's hospital next. None of the systems communicate with eachother, even within the same hospital. Utter madness.

 

I managed to get a copy of my written report (at first there was a page missing that had to be faxed over from Lewisham) but as the scans could not be reviewed, they quite rightly didn't want to interpret them.

 

They read as follows:

 

CT Chest

There is no signifcant lymph node enlargement in the chest.

There is widespread patchy & ill-defined opacification and interstitial thickening predominantly in the upper zones bilaterally with some associated prominence of the airways.

This appearance suggests bilateral upper zone fibrosis.

There are further ill-defined patchy areas of increased density (nodular and linear) and in both lungs which are non-specific and may reflect inflammatory change.

There is a 5 mm nodule in the periphery f the right lower lobe and a similar pleural based nodule on the left side.

 

CT Abdomen Pelvis (hmm....)

There are several tiny low density lesions in the liver, the largest in segment four, measuring 5 mm. These are too small to characterise, however raises the suspicion of metastatic involvement.

Multiple low density lesions are also noted in the spleen measuring up to 1.9 cm

Both kidneys, both sdrenal glands, gallbladder, CBD and pancreas are unremarkable.

There is no free fluid or lymphadenopathy in the abdomen or pelvis.

No focal bowel abnormality is seen.

No significant bony lesions.

 

Conclusion:

1/ Abnormal lung parenchyma with bilateral upper zone fibrosis and patchy shadowing in both upper mid zones. Much of this is non-specific and may be inflammatory.

2/ Bilateral intrapulmonary nodules as described.

3/ Several Low Density Lesions in teh liver which are too small to accurately characterise but suspicious for metastasis. Ultrasound correlation may be helpful.

4/ Multiple low density lesions in the spleen which are also suspicious for metastasis. (there seems to be a misprint here) just the word correlation appears after a couple of spaces.

 

I am therefore left with more questions, no answers, nor any treatment plan.

I could be anything from Tis to Stage IV from what I am reading.

 

I have chased up the CT images with my Nurse at Lewisham, so hopefuly they will be with the team before the next Meeting (next Mon p.m.)

 

The registrar I met with was nice enough "this is not how a consultation is supposed to be".

The consultant she called in said " we deal with cancer here, we don't see anything indicating cancer" and "they might want to biopsy your liver but we wont know until we see the scans for ourselves". He stated that there was no treatment for AIN, the recommendation was watch and wait. I said I wasnt sure that was true for AIN iii and advised of my symptoms and that they seem to be worsening.

He then said that the likelihood is that I will now be referred again, possibly to St Thomas's for further surgery for the AIN but this wont be decided until the MDT meeting on Monday and then confirmed to me on Tuesday. If they think I need to have further biopsies then that may be a different hospital, treatment option.

 

My interpretation so far is that they just werent ready for me today (and perhaps should have waited to discuss any findings), as I am a rare event (low risk group - young, fit, no anal sex, no HIV, no HPV) nobody knows what to do with me, nor do they want to make a decision as the pathway isn't clear.

 

I have asked for my HPV results to be double-checked as nothing seems to make sense to me either.

 

I just wish that the service & systems were more efficient. For all the wonderful work the nurses and doctors are doing, they are clearly under-resourced.

 

I at least managed to get them to give me topical lidocaine to alleviate my constant itching and soreness whilst I again wait for treatment.

 

So, fair enough, we wait another week - I leave them to chat about it.. I make more excuses to my family and eat more over-priced dark chocolate to get me through!

 

K8

 

 

Thoughts and prayers to you.  The conflicting information and uncertainty have to be very frustrating for you.  As far as the itching & soreness, try a sitz bath (or just sitting in a warm bathtub) - it really helped me after surgery.  (Lidocaie was good too.)

mp327 said:

K8

I am wishing, but not as badly as you, I'm sure, that the scans would have yielded more concrete information for you and your doctors.  I can understand why you are feeling in limbo right now.  The medical system seems quite confusing to me, with no one talking to each other.  I don't know what to say about that.  I was very fortunate that my doctors communicated with each other--at least when there was a need. 

I know the impression of the scan sounds scary, but lesions do not necessarily mean cancer, and neither do nodules.  It will all be sorted out, I'm sure, but the waiting is rough, I know.  Hang in there and know that many of us over here are concerned for you and keeping you in our thoughts and prayers.

Everything we eat turns to sugar.  Enjoy your goodies.  It gave me a good chuckle.  Thanks for that!

i hope it is all resolved soon.

K8M said:

Deja Vu

So, 3 hours and counting until I sit again in a room full of patients who know that they have cancer, to find out if I am one of them. A very odd feeling.

They asked me to call today at 09:00 to see if I needed to attend the 12:40 appointment.

The nurse confirmed that they discussed my case last night but that it was a late session and there were some lengthy discussions (whatever that means)

She said that she was told to give me two options, one to come in and talk about my scans today at Guys Hospital as "we do need to talk about them", or I can wait until next week and talk to Mr George about them at St Thomas' but that he does not have appointments until next week.

So, of course I am going in today. 

I am guessing that they want to take biopsies of my liver and/or spleen in light of what they have seen to confirm whether they are anything to worry about. 

Do they show you your scans in US? I found an interesting website: http://www.radcharts.org/Spleen/Spleen.html

I was supposed to be on a family holiday but in light of what has been going on at work and with my health, I made my excuses in order to play with the nurses and doctors instead. I have managed a gig and a mini-music festival to help pass the time.

I've been trying to stay away from some forms of sugar (!), but have started my last two weekend mornings with champagne breakfasts' with strawberries (a little nod to Wimbledon tennis fortnight). Lots of DIY and gardening too - keeping busy in body and mind. Went to the gym this morning and am still washing turmeric capsules down with green tea...balance in all things.

Family are expecting my biopsy results today - not sure what I am going to tell them, as I suspect it is all going to be more tests, "next week" and "wait and see". I'm thinking it may be time to be a little more open aa family will be together with their support network, ready and in place.  

K8

 

 

 

I certainly hope you can get some answers  soon--today if at all possible!  I think all the waiting you have had to do would be too much for me to take.  I'm glad you are finding ways  to keep yourself busy and somewhat distracted.  Please let us know when you return from today's appt. and what went down.  I am thinking all positive thoughts for you at this point!

K8M said:

Mixed Results - Mixed Feelings

So here we go:

AIN iii

“You haven’t got a cancer that we know of. You have pre-cancer.You might need another investigation under anaesthetic. That would be an on-going thing. Normally we would just “watch and wait” as quite often it turns into cancer. The worry is we have only assessed a small sample – we have only got the biopsies that we have removed to look at. Note though “Extensive on your notes means extensive AIN iii of the sample not of the anal canal”. However “Can it actually be excised? That is the other problem”. 

Lungs

We don’t think it is cancer. It doesn’t look like cancer at all. But, it is certainly not normal.  I am going to refer you to the lung team who might want to put a camera down and take a look. Response to “I used to smoke” – “Definitely not in my opinion smoking related”. You would have to have smoked for 200 years. It looks more like inflammation of some sort. It could be something called Sarcoidosis, but that’s just speculation. I don’t know, but it needs investigating. We are cancer experts here, so I wouldn’t like to say as there are any number of things it could be, it is not my specialist field. Are you Allergic to anything? – it could be an allergic reaction of some kind.

 

Liver & Spleen

In respect of the liver and spleen, again what we are seeing is not normal. We would resolve our concerns in respect of the liver with an MRI. My hopes are that this is nothing to worry about.

So, three things are going to happen now:

· MRI Scan of Liver (didn’t mention spleen but assume so) at Guys

· Appointment with Lung Specialist at St Thomas’

· Referral for AIN iii possibly more biopsies, treatment etc. at St Thomas’

 

It feels good to have a plan in of sorts in place. Although there will be lots more tests and results to come at least things are moving along again.

I ended up telling my immediate family everything today. It was all potentially too complicated, what with so many different referrals and quite a lot potentially to deal with. I thought this best for my sister especially, so that she wasnt on her own and had holiday time to get her head around everything.

Thanks again for your support. I might be on the wrong forum now I guess (!), but it has certianly been the right one in the fact that your support has been invaluable. Many thanks for making this journey somewhat easier.

K8 x

 

 

 

 

Gee, I don't know what to say.  I'm a little take aback by the wording, if this is indeed the exact wording of the reports that you received.  Perhaps you can clarify that.  The "watch and wait" protocol for AIN iii is probably the approach most doctors would take at this point.  I hope you can get some more answers once the additional testing and evaluations are done.  Please keep us posted.  And no, you are not on the wrong forum!