Newbie from the UK. Diagnosed with AIN iii this afternoon

K8M
K8M Member Posts: 55 Member
edited December 1 in Anal Cancer #1

Hi all

Following an appointment this afternoon, I am now awaiting a CAT Scan appointment before referral to St Thomas’ in London.

I am a 38 year old pre-menopausal female with AIN ii/iii stage perianal lesions and a recently excised AIN ii/iii polyp.

I first noticed the lesions Jan 25th , having been to my GP for treatment over the preceding 12 months for what I was previously informed was a small pile. My GP arranged for referral.

In the meantime I attended a sexual health clinic to rule out any infections, they performed a wide-range of STI tests, all of which were negative. e.g. I am HIV and HPV negative.

A full blood count indicated nothing more than a borderline monocyte count of 0.9 which has since lowered.

The polyp was excised on 22nd May and was (I believe) 2 cm inside my anal canal and small (1cm?)

The perianal ulceration is predominantly anterior, slightly raised (looks a little like angry skin tagging) but about 1cm around 1/2 to 3/4 of the circumference from which I have read, is not good.

I am keen to commence treatment; primarily for health reasons but also because the company that I work for is about to be acquired under a share sale agreement and a selection process for key personnel is due to commence shortly. I am hopeful of being earmarked for a fairly senior role and will need to be firing on all cylinders over the coming months. I am single, live alone, and therefore solely responsible for my mortgage commitments.

This looks like a great site for both info and support. I have always been a very private person and am struggling with how this life-changing news might define my future. The idea of being dependent and not fulfilling my ambitions is more frightening than anything else at the moment.

On the practical front, I imagine the employment rights in the UK are very different than in the US, but I can only think that I need to ensure that the selection process at work proceeds as far as possible before I reach a position where I have to inform my employers. I really want to stay busy and I don't want this new situation to affect how others think of me.

When did you tell friends, family, employers and with hindsight, would you do this differently if you could go back in time?

Thanks for listening,

K8

«134

Comments

  • Marynb
    Marynb Member Posts: 1,118
    K8
    Hi. I am sorry you have this diagnosis. I am not totally clear what AIN is? If it is anal cancer and assuming that you have the protocol treatment, it would be obvious from the first day of treatment, because you will have a chemo pump. I do understand your fears. I, too, am a very independent person. I am a single mother. You will need some support and I would suggest that you tell your family asap.. They will want to be there for you. I do not know employment law in UK, so I would not advise you on how to proceed. You will have to tell your employer something. It is inevitable that you will not be operating at 100%.

    We are human beings and we will all get sick sooner or later. If your employer is not supportive, shame on them!

    This treatment is very doable, but not easy. I was one of the lucky patients that did amaziningly well with the treatment. I wish the same for you. The important thng is that you are cured of this cancer!
  • TraceyUSA
    TraceyUSA Member Posts: 316
    K8

    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.

  • Lorikat
    Lorikat Member Posts: 681 Member
    I am sorry that yoU have this

    I am sorry that yoU have this diagnosis....  My blessings are with you.

  • mp327
    mp327 Member Posts: 4,440 Member
    K8M

    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.   

  • eihtak
    eihtak Member Posts: 1,470 Member
    K8M.....

    So very sorry that you have had reason to find this group, but sure glad that we are here for each other when needed. If I'm correct AIN2/3 is moderate to severe dysplasia with the potential to develop into invasive cancer if left untreated. What I'm not sure on is the treatment for dysplasia and if it is the same as most here have had. What have they suggested to you at this point? I was able to tell my family right away upon my diagnosis along with a couple close friends. I was diagnosed at Stage3b and was in horrific pain and quite ill at the time so I think all were somewhat relieved to have an answer. I left work almost immediately and told my employer I had lower colon cancer. Later when I had more information I was able to explain my situation in more detail. Depending on your course of treatment and other overall health will better determine your ability to work. We are all different and some do better than others. 

    I am two years post treatment now and doing better than ever. I feel like I have more energy, I sleep well, I am healthfully aware of nutrition and exercise, and have recently went back to college after 35yrs.

    Being diagnosed and going through treatment and how you recover will only define your future as you allow it to. There may be some hurdles to get over, but you will, as we have.

    I will have you in my thoughts and prayers as you move forward in this journey!  

  • K8M
    K8M Member Posts: 55 Member
    Newbie from the UK

    Thanks everyone for your comments, which are truly heartening.

    I woke up a couple of times last night - thankful for a good book!

    I am grateful for what looks like an early, pre-cancerous diagnosis. I think you are right in that chemo / radiation is not yet on the cards - T0 carcinoma in situ AIN iii is the treatable high-end scale dysplasia (hooray for the google - although I wish they would pay their taxes!).

    The consultant that I saw yesterday gave me the names of my potential new consulltants at the new hospital to which I will be referred, and I have emailed them already to introduce myself.

    I hadn't told anyone about my appointment yesterday but bumped directly into my best friend at the hospital, who now knows something is wrong (as I was a bit flustered). She is now like a dog with a bone! I want the CAT scan results though before I discuss it with her. She is emigrating to Australia next Saturday and I thought I could have sent her on her way without the worry. I will now speak to her, after her leaving party, but before she flies. Hopefully the scan will be done by then and I will have had a chance to talk to my close family.

    Do you usually get CAT scan results immediately, or is there (another) wait?

    I am resolved to fighting this thing (cant wait to get back in the gym) but the perianal itching indicates that I am going to need some treatment of sorts. This looks like it will possibly be either surgical to remove (which is the major worry bit due to the extent of the circumference of my dysplasia - i.e. incontinence / stoma) or as you say Imiquimod or similar.

    Thanks again for the support - you are amazing to be so giving and generous as you are through your own struggles.

    Clear CAT scan is goal one. I'll let you all know...

    K8 x

  • mp327
    mp327 Member Posts: 4,440 Member
    K8M said:

    Newbie from the UK

    Thanks everyone for your comments, which are truly heartening.

    I woke up a couple of times last night - thankful for a good book!

    I am grateful for what looks like an early, pre-cancerous diagnosis. I think you are right in that chemo / radiation is not yet on the cards - T0 carcinoma in situ AIN iii is the treatable high-end scale dysplasia (hooray for the google - although I wish they would pay their taxes!).

    The consultant that I saw yesterday gave me the names of my potential new consulltants at the new hospital to which I will be referred, and I have emailed them already to introduce myself.

    I hadn't told anyone about my appointment yesterday but bumped directly into my best friend at the hospital, who now knows something is wrong (as I was a bit flustered). She is now like a dog with a bone! I want the CAT scan results though before I discuss it with her. She is emigrating to Australia next Saturday and I thought I could have sent her on her way without the worry. I will now speak to her, after her leaving party, but before she flies. Hopefully the scan will be done by then and I will have had a chance to talk to my close family.

    Do you usually get CAT scan results immediately, or is there (another) wait?

    I am resolved to fighting this thing (cant wait to get back in the gym) but the perianal itching indicates that I am going to need some treatment of sorts. This looks like it will possibly be either surgical to remove (which is the major worry bit due to the extent of the circumference of my dysplasia - i.e. incontinence / stoma) or as you say Imiquimod or similar.

    Thanks again for the support - you are amazing to be so giving and generous as you are through your own struggles.

    Clear CAT scan is goal one. I'll let you all know...

    K8 x

    K8M

    It sounds like you are very well informed about the dysplasia and possible treatment options.  That's great--knowledge is power! 

    As for telling your friend and others about your situation, I think it's wise to put off telling anyone until you at least have the scan results.  Without those, there will just be a lot more questions asked of you that you won't be able to answer.  As for when results are given, it varies greatly.  Most people are scheduled to see their doctor post-scan to discuss the findings, which can mean immediately or several days later.  I am fortunate to have a radiologist friend who works where I get my scans who gives me the results same day.  As most of us will tell you, the waiting is the worst!  I hope you will get a clean scan report and that some of your worries will be laid to rest. 

    BTW, you may already know that there is a very good dysplasia clinic in San Francisco as part of the UCSF healthcare system.  I realize you do not live in the U.S., but if there are any gray areas that your doctors are unsure of when it comes to treatment, perhaps a phone consult with Dr. Berry at the UCSF Dysplasia Clinic would be a good idea.  But hopefully your docs are already well-versed in the treatment for this condition and this would not be necessary.  I'm just throwing it out there as an option, should it be needed.  I know a couple of people who have seen Dr. Berry and think he is awesome and very, very knowledgeable.

    Please let us know what your CT shows and what happens next for you.  I wish you all the best!

  • K8M
    K8M Member Posts: 55 Member
    Newbie from the UK - AIN iii Update

    Knowledge is power - it is true.

    So CAT scan is tomorrow for Pelvic, Abdo & chest.

    In the meantime, the hard copy results of my biopsies came through (requested from consulatant).

    Reading the results, there was more information available than was disclosed by my consultant. The polyp, now described as Sessile, was small but the associated AIN iii had extended into the anal glands and was not therefore removed in its entirety. Which I am sure can't be good. There is also much reference to how extensive the AIN iii is and that there is significant focal erosion.

    I am sure that drip-feeding me as the patient, is probably the right thing for my Consultant to be doing from her persepctive, as I am a little more nervous now about the future. But in truth, for me, I would rather know / have a record to track and learn from my disease and treatment.

    In an effort to move things along, I have emailed both consultants at the new hospital to which I am to be referred to for treatment. I havent had a response but I have sinced managed to find out that my case is being discussed on Monday, so I suspect they will call me in midweek of next week. 

    I was on the mend post surgery but symptoms are getting worse again, more bleeding and constant weeping.

    I'm reading "Anticancer" so that I can feel like i am learning something, to get me through more of the waiting.

    They are starting to talk about how the "new organisational structure" will look at work and I am desperately hoping that I can time my treatment so that I can delay any sickness absence until after the decision making. Doesnt look good on that front - as it is an acquisition situation, the plan is to transfer everyone to the same company "as is" in phase 1 and then put various roles at risk of redundancy at a later date. One of my employees is off sick again this week, with "flu"; infuriating....

    Still holding my cards to my chest with family until I get these CAT Scan results.

    Anybody know what it means if AIN iii has invaded the anal glands? 

    K8

  • mp327
    mp327 Member Posts: 4,440 Member
    K8M said:

    Newbie from the UK - AIN iii Update

    Knowledge is power - it is true.

    So CAT scan is tomorrow for Pelvic, Abdo & chest.

    In the meantime, the hard copy results of my biopsies came through (requested from consulatant).

    Reading the results, there was more information available than was disclosed by my consultant. The polyp, now described as Sessile, was small but the associated AIN iii had extended into the anal glands and was not therefore removed in its entirety. Which I am sure can't be good. There is also much reference to how extensive the AIN iii is and that there is significant focal erosion.

    I am sure that drip-feeding me as the patient, is probably the right thing for my Consultant to be doing from her persepctive, as I am a little more nervous now about the future. But in truth, for me, I would rather know / have a record to track and learn from my disease and treatment.

    In an effort to move things along, I have emailed both consultants at the new hospital to which I am to be referred to for treatment. I havent had a response but I have sinced managed to find out that my case is being discussed on Monday, so I suspect they will call me in midweek of next week. 

    I was on the mend post surgery but symptoms are getting worse again, more bleeding and constant weeping.

    I'm reading "Anticancer" so that I can feel like i am learning something, to get me through more of the waiting.

    They are starting to talk about how the "new organisational structure" will look at work and I am desperately hoping that I can time my treatment so that I can delay any sickness absence until after the decision making. Doesnt look good on that front - as it is an acquisition situation, the plan is to transfer everyone to the same company "as is" in phase 1 and then put various roles at risk of redundancy at a later date. One of my employees is off sick again this week, with "flu"; infuriating....

    Still holding my cards to my chest with family until I get these CAT Scan results.

    Anybody know what it means if AIN iii has invaded the anal glands? 

    K8

    K8M

    I hope that once you and your doctors have the CT scan results, things will move forward quickly for you regarding a plan of treatment, especially since your symptoms seem to be getting worse.  Please keep us posted on what happens next for you.  I am sending you positive thoughts!

  • K8M
    K8M Member Posts: 55 Member
    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

     

     
  • Marynb
    Marynb Member Posts: 1,118
    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

     

     
    K8
    Hang in there. I also had multiple lesions in the liver, too small to characterise for now. I can't comment on the scans, because I am not a doctor. Hopefully, they will make a plan..

    I would avoid sugar if I were you. It is pretty well known that cancermcells require glucose to grow. Sugar, in effect, feeds cancer cells. So, go easy on that chocolate!

    I would try to tell at least one or two family members what you are going through. You need some support right now.

    All will be well! You are in my prayers, K8.
  • TraceyUSA
    TraceyUSA Member Posts: 316
    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

     

     
    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
    mp327 Member Posts: 4,440 Member
    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

     

     
    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.

  • Phoebesnow
    Phoebesnow Member Posts: 600 Member
    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.

    K8

    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
    K8M Member Posts: 55 Member
    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

     

     

     

  • mp327
    mp327 Member Posts: 4,440 Member
    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

     

     

     

    K8M

    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
    K8M Member Posts: 55 Member
    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

     

     

     

     

  • mp327
    mp327 Member Posts: 4,440 Member
    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

     

     

     

     

    K8M

    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!

  • Marynb
    Marynb Member Posts: 1,118
    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

     

     

     

     

    K8
    Well, it sounds lke they are on top of things. I am glad you told your sister for some support! What is ain iii?
  • K8M
    K8M Member Posts: 55 Member
    Thank you. The findings were

    Thank you. The findings were somewhat unexpected! More questions and fewer answers.

    My consultant was really surprised to find me looking so fit and healthy.

    AIN stands for Anal Intraepithelial Neoplasia, it is graded as Carcinoma In Situ and aslo called High Grade Intraepithelial Dysplasia.AIN iii is the grade where the dysplasia is evident in the full thickness of the skins layers. It means effectively that all of the relevant skin in that area is abnormal and damaged, but it is not cancer at this stage.

    I'm going to start looking into some breathing exercises whilst I wait for my next referral.