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Newbie from the UK. Diagnosed with AIN iii this afternoon

K8M
Posts: 43
Joined: Jun 2013

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

Marynb
Posts: 1134
Joined: Aug 2012

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
Posts: 132
Joined: May 2013

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's picture
Lorikat
Posts: 557
Joined: Jul 2011

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

mp327's picture
mp327
Posts: 2856
Joined: Jan 2010

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
Posts: 822
Joined: Oct 2011

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
Posts: 43
Joined: Jun 2013

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's picture
mp327
Posts: 2856
Joined: Jan 2010

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
Posts: 43
Joined: Jun 2013

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's picture
mp327
Posts: 2856
Joined: Jan 2010

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
Posts: 43
Joined: Jun 2013
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
Posts: 1134
Joined: Aug 2012

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
Posts: 132
Joined: May 2013

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's picture
mp327
Posts: 2856
Joined: Jan 2010

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
Posts: 447
Joined: Apr 2011

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
Posts: 43
Joined: Jun 2013

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's picture
mp327
Posts: 2856
Joined: Jan 2010

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
Posts: 43
Joined: Jun 2013

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's picture
mp327
Posts: 2856
Joined: Jan 2010

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
Posts: 1134
Joined: Aug 2012

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
Posts: 43
Joined: Jun 2013

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.

Marynb
Posts: 1134
Joined: Aug 2012

Well, that is terrific news!! I am so glad you don't have cancer. I am hoping they can treat you and get you back to normal very soon! I think liver cysts are pretty common. I do have them and they do MRI's for monitoring. I have seen all of my scans and at this point, I almost have too much information about all the ticking time bombs inside me!

I ljust love that you are having champagne and strawberries in preparation of Wimbledon! Here, across the Pond, I used to throw breakfast at Wimbledon parties! Enjoy! Try not to worry. All will be well!

K8M
Posts: 43
Joined: Jun 2013

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.

qv62
Posts: 253
Joined: Nov 2012

I just read through your thread and want to wish yu all the best in your journey, I have been battling carcinoma insitu for over 4 years, many biopsies and multiple surgeries, it becomes difficult at times but keep the faith, this board has been a wonderful source for me, I hope it will be for you too. I'm told my case is somewhat unique as to the amount of recurrences and how quickly they occur, my latest biopsies show micro invasion, this is a long road but here you will not travel it alone.

K8M
Posts: 43
Joined: Jun 2013

Thanks QV62. Sorry to hear that you have been suffering this for some time. I had a bit of a wobble this morning because it is quite difficult just getting on with a normal day. Whenever I think the itching or pain (mostly itching with me) might go away, its then time for another BM (which varies in degree of pain). It's also difficult trying to make sure I am having BM's at home (because of work). Thankfully control is good at the moment.

I haven't heard from either Guys or St Thomas' in respect of my referrals. MRI is tomorrow though so, I guess that they think that examination of the liver / spleen is the priority.

Do you have any tips for dealing with the irritation? They have given me Instillagel (Lidocaine Hydrochloride 2g/Chlorhexidine Gluconate Solution .25g/Methyl Hydroxybenzonate 0.06g/Propyl Hydroxybenzonate 0.025g) but they hardly come in handbag sized syringes!

In all seriousness, though I do wonder whether it is not better to let my body work it out / find its balance? Whats your opinion?  

Also, any tips on diet? I started off being very good and eating lots of soft veggies etc. but quickly got bored and it is tricky to always have time to prepare fresh veg etc. I'm back on it this weekend though. Courgettes in garlic with sundried toms and mixed grains, and I've also made aubergines in onion & tomato.

The waiting is hard. I'd really like to know where / how much of the canal is affected. The perianal I can see for myself (with a bit of gymnastics!) but I think it would help to have some understanding of widespread the problem is internally. Certainly I don't seem to have healed properly since they took the polyp back in May; symptoms have been worse, and not better.

The share sale has completed at work and I met the MD who I will be working with. Really need to be getting on with treatment and getting fit again as he seems like a tyrant. I wont have much exposure to him until Aug. I wonder whether I can get the NHS moving by then!!

Have you had surgery and/or ablation?

 

TraceyUSA
Posts: 132
Joined: May 2013

I've been following your posts and am sorry to hear all that's going on with you but I'm glad you don't have an anal cancer diagnosis.  After I had surgery, I have painful BM's and found that a sitz bath really helped.  (Sitting is a warm bathtub also provided great relief.) I use baby wipes (unscented, sensitive type) instead of toilet paper.  Hydrocortisone cream (which is over the counter in the US) may help the itching.  My doctor also told me that applying a thin layer of Vaseline (petroleum jelly) on prior to BM would help.  

Marynb
Posts: 1134
Joined: Aug 2012

Dealing with uncertainty is very difficult. I have had cancer twice now and seems I may have more cancer to battle, but waiting for test results again. What I have decided to do is live each day, live the life you have been given. Sounds like you feel pretty well, so go ahead and do what you want to do. Today is today. What may be ahead, none of us ever really know. You might ask the doctor for some meds to deal with the itching. Some here have taken Benadryl with good results. It makes me sleepy, so I can't take it. Maybe a topical cream? I hope that there is a treatment protocol that is effective for your diagnosis. It seems that you could be in it for the long haul. I really wonder how precancer cells can be treated so they don't turn cancerous? Do they remove them? Do they treat with chemo and radiation? What is the plan?

qv62
Posts: 253
Joined: Nov 2012

Hi K8 sorry for the delayed response, I just got back from vacation yesterday, I hope you are doing somewhat better by now, as mentioned by other posters the sitz baths are wonderful I have the plastic insert that goes into the toilet seat  (one in each bathroom) I also use the lidocane periodically, and desitin when things get raw, I went for months of physical therapy due to loss of sphincter control from all the surgeries, I have had resectoins and skin graphing, tumors removed, biopsies etc. lost count but did not deny myself of pain meds, I know some will tell you to avoid them but I neede to avoid the pain, I take Konsyl daily and mix lots of veggies in my vitamix, stool softners are also part of my routine post surgery, right now I am classified as micro invasive, pretty much just waiting for this ugly disease to become more agressive before I take on the chemo/radiation, feel free to message me at anytime, I am rooting for you !!!

 

K8M
Posts: 43
Joined: Jun 2013

The MRI scan has revealed “good” news in that the lesions appear suggestive of Granulomas involving liver and spleen. The registrar explained that granulomas are benign tumours, affecting youngish people (!)

MRI still not being a firm diagnosis, but the most likely diagnosis is a condition called Sarcoidosis. The lung team will establish this as I think in respect of Sarcoidosis the lungs are the biggest issue. I asked also about Tuberculosis and this cannot be ruled out either. Granuloma conditions, include TB, but then my exposure risk to TB makes this unlikely.

Likely Procedure – Fine Needle inserted into granulomas to obtain a sample and have a look under a microscope. In respect of the procedure they will take a risk based approach by selecting one of the Granulomas posing the least invasive risk but with the highest chance of a successful sample being taken (and deciding whether this should be Spleen, liver or lung or more than one). This does still not give a 100% specific diagnosis but is a much better indicator.

The procedure is not without some risks (bleeding / discomfort) but this would be the only way to confirm the diagnosis. The procedure is usually carried out by a specialist radiologist and they will decide on the sample to be taken as they would be the person carrying out the procedure.

I  will be discussed again at the next MDT (tpmprrow, Monday 29th)

 

This suggested diagnosis is completely separate to the AIN3 diagnosis – AIN3 is not related to the Sarcoidosis. For interest he said it is very unusual to have a precancerous condition, and metastatic cancer.

Whilst medical science is rarely exact and so it is important not to rule anything out at too early a stage, this is really the best news I could have hoped for in respect of the liver and spleen.

They are going to chase up my referrals to the lung team at Guys and St Thomas’. I asked as to whether it was likely that they were waiting for the results of the MRI before booking me in and the answer was that yes this was likely.

We discussed history again (Heartburn / TMJ). Sarcoidosis can cause a sort of arthritic type condition / inflammation that can affect the jaw.

They may consider a PET scan (the one with the sugar water and the hour-long lie down!) but he thinks this unlikely and that I have had all of the imaging that they think is necessary at this time. They will give me a “Safety” follow up appointment in 2 weeks’ time to make sure referrals have happened.

 

pializ
Posts: 257
Joined: Nov 2012

All looking good so far for you. I have heard of sarcoidosis but don't know much about it. Maybe more info on patient.co.uk? Hope that helps, although I guess you have done your research already.  Wishing you all the best, Liz

mp327's picture
mp327
Posts: 2856
Joined: Jan 2010

I, too, have granulomas in my lungs and also a benign spot on my liver.  My lung granulomas are thought to be a result of a history of histoplasmosis, which I never even knew I had.  This is a condition that is caused by inhaling spores in the soil when the dirt is tilled up for planting.  People who live or grew up in agricultural areas, such as myself, are more at risk.  It is a benign condition, at least in my case, and no longer active, as my granulomas are calcified (or old).  Perhaps this could also be a factor in your condition, perhaps not, but I thought I would mention it.  I hope that the FNB will be successful and provide the answers you and your doctors are seeking.  May it be benign and nothing sinister.  Please let us know.

K8M
Posts: 43
Joined: Jun 2013

Hi all

So after a few administrative challenges, I am now booked in to have local excision of the AINiii in the perianal region and am set for surgery on 10th under the care of the regional anal cancer specialist who I met this week and who was fabulous. I only hope he carries out the procedure personally.

I was offered the next stage operation i.e. wide circular complete excision and skin grafts replacing all of the skin up to the dentate line but thankfully this was thought to extensive for me at this stage. I was shown what the scars from this would look like and was pleased to see that this demonstrated what looks like truly excellent surgical work.

I know it sounds vain and ingrateful but I hate the fact that I have to elect for surgery knowing that I will probably never have a "pretty" bottom anymore. I am still nervous that post surgery will be worse than before and that I will end up worse and not better off. I suppose I havent come to terms with the fact that the skin is effectively inrecoverable.

I also don't really understand how the healing process is going to work. They are making a wide local excision but wont use stitches? Confused as if my skin is not prone to good healing,,,it just doesnt make sense to me. I need to get hold of the nurses.

I seem to have developed a small tear / suspected fissure which is possibly why it a BM seems to be more uncomfortable now than it did 2 weeks post surgery.

On the Sarcoidosis, my lung function tests seemed to go well but I did have a chance to see my scans and the ground glass opacity is everywhere which is a bit scary. I assume I must be in full "flare". Negative here is that if they put me on steroids this will impact my immune system and potentially mean the AINiii is more likely to return. I'm hoping therefore  I can avoid prednisone.

Doing all I can now to stay fit and healthy as I wasnt expecting the surgery to be booked so quickly. Good news but scary. 7-10 days recovery or so I am told. 3 months back to normal.

I emailed Dr Berry's details to my consultant (Thanks MP327) - I thought it wouldnt hurt. I noted that UHSF are doing clinical study on Chinese Medicine which is interesting.

QVC62 - for your interest:

Arnebia Indigo Jade Pearl
1/4 teaspoon of the cream twice daily for 48 weeks
weekly acupuncture and moxibustion
 
 
Four out of nine participants have experienced complete or partial regression of their lesions
 
mp327's picture
mp327
Posts: 2856
Joined: Jan 2010

No one looks forward to surgery and I'm sure I would feel the same way as you do--anxious.  I hope the doctor who is the specialist in this field will, indeed, be the one who performs your surgery.  I know the thought of having a bottom that might not look as pretty as it once did is a worry, but the way I see it, function is the main concern.  From what you've stated, the recovery period seems relatively short. 

I hope Dr. Berry will provide some information to your medical team if needed.  I have heard nothing but good things about him and his expertise.  I have given his name to quite a few people on different support sites. 

I wish you all the best with the surgery and hope you'll let us know how it went as soon as you are up to it.  I will be very interested in knowing how internal skin grafts such as are planned for you will work, as this is a procedure I've not heard of.  Know that I will be thinking all good thoughts for you! 

Marynb
Posts: 1134
Joined: Aug 2012

I don't know anything about this procedure at all. I do hope that you have skilled doctors. It sounds like you have some good confidence in the surgeon.

Sounds like you won't have the standard radiation and chemo regimen? Or is that in addition?

Stay strong and take very good care of yourself now. I hope you have supportive family nearby to help you recover. You will be in my thoughts and prayers on the 10th!

Hang in there!

qv62
Posts: 253
Joined: Nov 2012

K8M, thanks for the info and links, I just checked them out, very interesting, I see my oncologist on Wed and will question her, the last topical they put me on was the Aldera, I had a horrible experience I did not tolerate it well and it was clearly unsuccessful, not only did it make me very sick I was in extreme pain as well. I will look further into your info and see what she has to say. As for your surgery, I wish you all the best, please keep us posted, I am amazed they can do this without stitches, that is wonderful, I had a wide excision with skin grafting, and flaps however I had nearly 100 stitches (or so it seemed) they were quite painful to be taken out, I remember nearly fainting, my hospital stay was a week and I was not allowed to sit for six weeks, it seems your procedure will be much more streamlined with a quicker recovery, I am happy to hear that for you, best wishes, please keep us posted

K8M
Posts: 43
Joined: Jun 2013

Hi

I think my post must have been a little misleading. But although I am having a more localised procedure wihtout grafts, I'm still not sure how the healing is going to work without stitches and just leaving an open wound. I need to get in touch with the hospital so I can prepare accordingly as I am worried about infection. It always seems very odd to me how little information you get about surgical procedures. Some scribbled notes on a hand written file about what they are planning to do that you don't get a copy of. I did receive a copy of a letter sent to my GP but it was written in haste and gives more about the historical background than the procedure proper.

The good news is that my (I hope) surgeon is giving a talk on AIN in November and so is clearly very interested currently in the subject.

Im still confused about whether the Sarcoid could have caused this. I don't know whether I will ever know but it makes me worry that surgery is the wrong option. But then AINiii is not reversible but sarcoid skin lesions are so I guess this is just wishful thinking on my part.

 

The only problem I can see with trialling the Chinese Medicine option is that you seem to need to be stable for a whole year. Intersting to see whether they can develop this further though and ID any active ingredients. If I thought I could go on with my present symptoms without surgery then I would try this over Aldara as Imiquimod seems like something from some sort of medieval torture garden. It has been suggested that I may have to use it post surgery for small areas later on if they dont manage to remove everything and if it comes back.

 

 

Phoebesnow
Posts: 447
Joined: Apr 2011

I don't even know how to say what I want to say.    When I hear these stories of people caught early in diagnosis, I wonder what is worse, to have full blown cancer and the tx and the side effects or being dragged thru these procedures over over and over again.  My heart goes out to all of you.  I pray that it works for all of you.

K8M
Posts: 43
Joined: Jun 2013

Surgery Date - 12/09/2103

Healing at this stage post surgery is “Amazing”.

There is no evidence at all of Stenosis

Before and After Pictures of pre and post surgery made very clear why healing is slow going! It is still painful but now manageable, although I still really need to be at home to "go". I dare not try anything other.

I am advised that repeat Cervical Smears are not necessary. Field change relates to Vulval Cancer and not to Cervical (VIN not CIN)

All of the tissue that was removed was, as expected, confirmed as AINiii. Histology to be re-checked in respect of HPV 16 & 18 as not stated on notes. Frustrating as I was verbally told that I was negative at the initial clinic but it seems to me to be important to reconfirm this.

Consultant was lovely as always: “You can go swimming – you can do whatever you like. “ Amen to that - so grateful!

And the most important reason for re-posting (sorry if this has already been discussed):

There is some talk of a new Vaccination that has had a positive effect on people who have similar conditions (VIN) that has caused not only prevention but regression of lesions. It is likely that it may have the same effect on AIN. Don’t get too excited but there is hope for the future....see link....

http://www.isa-pharma.com/2013/09/isa-pharmaceuticals-initiates-phase-iii-clinical-trial-isa101-patients-anal-intraepithelial-neoplasia-ain/

mitchelsdaly
Posts: 13
Joined: May 2013

Hi, I'm hoping this message reaches the newbie from Britain. First off you've come to the right place.  I have been cancer free for a year now from stage 2/3 anal cancer.  I don't have a lot to say other than your life as you know it is going to change, but I will tell you this.  As strange as it sounds there are gifts that come with experiencing a life altering diagnosis.  

  You sound like a very intelligent woman.  Do not concern yourself with what people think.  If they respond with any sense of judgement it says much more about them then it does you.  I am a gay man  who is hiv positive, as well as hpv positive, hence the anal cancer.  I, thankfully, have experienced very little what I perceived to be ignorance on the part of those I've had to deal with.  Strangely the only person that did not respond correctly, or with any sense of appropriateness was, and I do say do say was, as in past tense, was my proctologist.

  I wish you all the best during this holiday season.  Know that there are alot of people out there, myself included that wish you the best during your journey.  Do not forget that one of the best things about the diagnosis of anal cancer, is that it is one of the most treatable forms of cancer. Upwards of 85 percent success rate.  So put that in your stocking this Christmas................................Sincerely, Mitch

Clm83
Posts: 1
Joined: Dec 2013

I am a 30 yr old female recently diagnosed with AIN iii. My symptoms started in July 2013 when I had uncontrollable anal itching. I went so far as to have my boyfriend shine a flashlight to check for pin worms.  Twice I was misdiagnosed as having hemorrhoids since I had a skin tag. Finally, after many nights of poor sleep I decided to just see a colon rectal specialist. After a month of trying a cream he did some biopsies. 3 of the 4 punch biopsies came back AIN iii. The crazy thing is that I never have anal sex, I was vaccinated with gardisil at 23, I do not smoke, all of my paps were negative until 3 mos ago, I did a FDA STD screening in May which came back negative for everything, and a year ago my mother underwent treatment for stage 2 anal cancer caused by HPV. I do not see how these doctors cannot see some type of correlation between my mother and I basically having the same disease...but that's beside the point.

On the positive side I am so happy that this was found before I had to under chemo and radiation like my Mother. It was so hard to watch her go through that. The strange thing is that my mother had abnormal paps from the time that she was 24. She neglected paps for several yrs before her age 50 colonoscopy and the doctor found the anal tumor just inside her anus During the colonoscopy. We are all so lucky that she is cancer free at this time. However, I am scared to death of all of the waiting and uncertainty For her as well as myself.

K8, I am surprised infrared coagulation and CO2 laser ablation were not offered as treatments for you. I was referred to a specialist( I will see him on 12/17) to have the anal version of a colposcopy and one or both of these treatments. Background info-Supposedly, these are the new treatments being used but it is difficult to find someone trained in them. I live by Johns Hopkins and only 2 doctors in my state actually offer this procedure. Since GYN's have been treating CIN for years the colon rectal doctors actually have to be trained by a GYN to learn how to perform these procedures. K8, It was explained to me what you had was the more extreme approach. How are you healing? Did they get all of the lesions? Do you need anymore follow-up? I just really want to get this taken care of so that I do not have to go through what my mother went through.

I guess it feels good to talk to someone who might have an idea what I am going through. It just feels like I am waiting to get cancer. I go about my day and I am fine, then I realize "Wow! I have this thing going on in my body!" I feel like I am becoming a hyperchondriac... Every little ache pain and I think the worst! The google searches are killing me, too. The stigma and shame around this. I really do not feel comfortable telling people about my diagnosis and HPV. Do NOT get me wrong I am so happy that this was found so early, but it's as if when you tell people that you have late stage precancer they have this you will be fine attitude. Part of me feels a little alone through all of this....like no one understands that I need some type of support. 

K8, I wish you all of the love and healing thoughts that I have! We are in such a strange place and yet we are so lucky that they did not find cancer.

mp327's picture
mp327
Posts: 2856
Joined: Jan 2010

I am so happy you have found this site for support.  The people here are great and will virtually hold your hand through this ordeal.  I'm so glad you have found a doctor who uses cutting-edge treatment for AIN.  It certainly is a hard place to be, like you say, sort of waiting for cancer to develop.  But I hope your doctor can get you through this without you having to undergo the treatment that most of us have had and also your mother.  I'm so sorry she had to go through chemo/rad--it is no easy journey.  And I'm sure it is hard to watch a loved one suffer through the pain.  I hope she is doing well and that her cancer-free status continues for the rest of her life.

There is much comfort in being able to communicate with someone else who is dealing with this same condition, so I hope you and K8M can share information.  I, myself, have undergone coagulation for anal condyloma--lesions that were benign, but have the potential of turning cancerous--back in September 2010.  It was not as bad as I had anticipated and I healed very quickly.  However, I was a little worried about healing, since I have had radiation.  Since that time, there has been no return of these lesions to date and I hope they never return.  Even though I am over 5 years out of treatment, I am still getting checked by my colorectal doctor every 6 months with DRE and anoscope.

As for the connection between HPV and anal cancer, I think that has been proven by now.  However, and I can only speak for myself, I do get quite angry when people presume that you have to have had anal sex in order to get this disease.  It is so not true.  I never did and I would guess that most women who get this disease never did either.  Unfortunately, the female anatomy lends itself to being vulnerable to this virus in the anal area.  Even during normal sex, it is quite easy to pass this virus onto the anal area.  Still, there is such a stigma that surrounds this disease, which means there needs to be more education and public awareness.  Any woman who has had sex with a partner who has previously had sex with someone else is at risk, plain and simple.  Over 80% of people, both male and female, will have acquired one or more strains of HPV by the time they are age 50.  It is nearly unavoidable.  For most people, it causes no problems, but for those of us who are not so lucky, here we are.  So, I tell you all of this to remind you not to be hard on yourself about this.  

Please keep us posted on how you are doing.  I wish you all the best and if you need support, we're here for you! 

Marynb
Posts: 1134
Joined: Aug 2012

I can't add much to what Martha has said, but I just want to Lend my support. My daughter had to watch me go through treatment and I know it must have been hard to watch your Mom battle this.

I am so glad that they caught this early and I do hope that the treatment works! It might be good for you to start a new thread on AIN, because there are others on this board being treated for this. It sounds like you found some good doctors to treat you with the new techniques!

I am sure this is stressful for you, so be sure to take extra good care of yourself now. Pay close attention to your diet, get plenty of sleep, drink clean water, and don't stop exercising. Give your immune system the fuel it needs to kill those abnormal cells!

Stay strong and well!

Mary

K8M
Posts: 43
Joined: Jun 2013

Hi Clm83

Thanks for sharing your story. It is really useful to be able to share info openiy for all AIN sufferers who may not feel comfortable posting.

The treatment options were indeed narrow for me over here in the UK. What have your treatment experiences been like and how have the results been?

I am mindful that I have only had one surgery and would like to be ready with more information on what treatments are available in the states (and most importantly the patients experience of them in terms of recovery and improvement in symptoms).

Recovery for me has been manageable and I only have bleeding when I have a fairly large or difficult BM now. Things are so much better than before surgery and my life is back to being (mostly) enjoyable. I am also not due to see my consultant again until March which can only be a good sign that he is confident that things are going well.

I will keep my post short today as it's Christmas morning and everyone is wondering what I am doing! But please keep sharing your thoughts and I will do my best to share mine.

Much love

K8

 

 

K8M
Posts: 43
Joined: Jun 2013

I knew it was, but it is upsetting to have it confirmed. Watch and wait for 2 months; then most likely the same surgery as last time. Initial surgery healed perfectly and i had clear margins, but 1/4 to 1/3 of the area has returned. For now, it is the waiting game again; so back to getting healthy, kicking the champagne lifestyle into touch and hitting the gym while I can before the Op.

K8

pializ
Posts: 257
Joined: Nov 2012

Hi K8. I too am in the UK. 

I am sorry to hear your news.  I have seen another person posting a similar experience & it seems so frustrating & painful. 

I hope they get it all again & that it doesn't return. 

Meanwhile, enjoy each day, including the gym. 

Take care

Liz x

TraceyUSA
Posts: 132
Joined: May 2013

Sorry to hear your news.  I had similar experiences years ago for cervical dysplasia.  I took a couple of procedures and many 3 month PAPs before I got good results.  I took vitamins to boost my immune system to help my body rid itself of the abnormal cells.  My thoughts & prayers go out to you.

mp327's picture
mp327
Posts: 2856
Joined: Jan 2010

I am sorry to hear this.  It's good that you are working on your fitness though!  Thanks for keeping us posted.

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