AIN 2 - is this the right place?

Hi  welcome to the Group and yes you are in the right place!   

My anal cancer was caused by one of the high risk HPV strains (HPV 16) .   I had pre-cancerous cells on my cervix about 30 years ago caused by HPV.  The virus lay dormant until it caused my anal cancer in 2019.  Almost everyone who has ever had sex has had exposure to HPV, although a lot of the strains are not at a high risk of causing cancer.  Also, most people's immune systems shake off the virus but other's don't and it can pop up as cancer decades after the virus first hits your system. 

Your decision to carry out some research after your cervical infection could well have saved your life. If I had known of the high risk I was at given my previous pre-cancerous cervical cells, I would have paid to have had follow up examinations.  It is reassuring that once you have been referred to Homerton you will be monitored for at least 5 years.  This will enable action to be taken before the AIN2 progresses to anal cancer. 

I understand that the decision whether to proceed with treatment depends on how high grade the AIN2 cells are. Your case should be discussed amongst the professionals involved in your care and the options presented to you with the risks and benefits set out so you can make an informed choice. I would ask your treating doctor to provide this information to you.

In relation to your question about healthy eating, there's been quite a lot of discussion on a recent thread - please click on the following link to read the comments- https://community.macmillan.org.uk/cancer_types/anal-cancer-forum/f/general/243302/wellness-practices 

Whilst I do eat a fairly healthy diet, I still eat  chocolate and cake. I will also never stop drinking diet coke! Alcohol is also still consumed at weekends.  Whilst it's important to keep your immune system healthy I'm not prepared to live a life of complete denial of treats!  Bev  

1in1500 thank you so much for your enormously kind and generous response. I will check out the healthy eating threads this weekend. Got a big family wedding today - going to try and put it all from my mind then get to health mode tomorrow. Really, really appreciate you being here: thank you xxxx

I am really pleased that you have had such a comprehensive reply from Bev, I can't give any information as this is a learning curve (and a rather shocking one) for me too, but I hope you have found some good ideas on the healthy eating.  I need some ideas too, I always ate healthily, mainly a Mediterranean diet, but the last lovely big plate of salad and oil and lean meat went right through me!  I am feeling my way but some of things I eat now really go against the grain.

I am happy that you are under a good team that are looking after you and will wait to hear what they suggest.  Very best of luck.

I have learned something reading your reply.  I had abnormal cells in the cervix 38 years ago - I seem to remember CIN 3, and had to have quite a deep conical biopsy of the cervix.  Afterwards the doctors said the margins were clear and I had nothing to worry about.  Like you I had no idea I was high risk, and here I am today.  That said, I was very unlucky.  I had a colonoscopy in 2017 that noted a polyp and a lipoma, both were biopsied and clear.  However, last year after a CT scan showed a tumor (in the same place as the lipoma, now bigger) two sigmoidoscopies and samples still came back negative leading to a CT guided biopsy through my back, plus a biopsy under GA which then identified the cancer.  The tumour was submucosal hence the negative results.

Bring on the treats I say; we are in Spain and the local supermarket does the most delicious dark chocolate ice lollies, 85 calories each - I am trying to work out a way to transport a shed-load back to the UK!

Thanks so much Irene75359. Will share any advice I get - thank you for making time to post - means a lot. I also just want to clarify one thing from my first post - I am not for a minute saying why me - i mean ultimately why anyone and if it has to be someone why not me? It is just - and I don’t know if you felt similarly at all when they mentioned HPV - i didn't think if I got something like this it would be sex related, more say my salad dodging or stress or something. :) Just a shock to realise this has been lurking away since early twenties or even my teens…. 

I want to be clear I am not saying that means I deserve this any less or anything like that.  Plan from today is to stop wondering why and focus on what now. 

Really appreciate your kindness ladies and I hope you both have a great weekend xxxx

I didn't think you were for one minute and please don't worry, that certainly isn't how your post came across.  I feel exactly the same, why not me?  But no one has mentioned HPV to me, I learned that reading on this forum.  And yes, to think this has been lurking for such a long time is shocking.  From another 'vanilla' person!

Hi there ,

Welcome, despite the fact that none of us really want to have to be here, we’re a pretty fantastic group for support!  I’m so sorry that you’re dealing with this challenging news.  I do hope your team mobilizes quickly, your appointments can happen soon, and that you find someone in the team who can really give you strong guidance about how to proceed.  Waiting is one of the worst parts of the process.

I saw three different oncology teams here in the U.S. before I felt fully comfortable with a treatment plan.  After weeks of not feeling “sure,” the third opinion felt absolutely, undeniably “right.”  It was a huge relief to feel that confident about treatments, so I wish the same peace for you, and soon!

Ok, so this’ll be a long-winded post, because you asked about diet!  First and foremost, I’m not a doctor or a dietician, I’m just a retired ballet dancer (43 y/o) who has always had a keen interest in nutrition and how it could help maximize my body’s performance.  After the cancer diagnosis, I asked questions of my medical team about Every. Possible. Lifestyle related change I wanted to make. I encourage you to do the same!  What is good for one may not be good for all, but I did find that as I talked to people who were thriving in their post-cancer lives, they brought up things that I’d not thought of, so here might be some starting points for you.

Pre-cancer me:  I’m thin, lean muscle.  Exercise was typically strenuous, 3-5 times a week.  Think self-defense/mixed martial arts, running, ballet class.  Diet was almost no processed food, no artificial sweeteners, alcohol averaging 5 drinks per week, lots of raw and cooked veggies, lots of lean protein consisting mostly of eggs and chicken, but also salmon and beef.  I also love cheese!  Occasionally, I’d have a dessert.  Two-three cups of coffee a day, sleep habits were poor, sometimes staying up til 1 or 2am to have some “quiet time” in my house.  I’m a mom of two elementary kids and husband works from home—I wouldn’t change any of that, but I’m also an introvert and sometimes sacrificed sleep to just be “alone.”  The pandemic made “alone time” even more scarce, with kids at home for school and hubs never even going to a lunch meeting.

Diagnosis and early treatment (Late august-September):  I already showed spread to the liver upon diagnosis, so before I could have the standard 6 weeks of chemo radiation, I had to have 4 rounds (3 months) of heavy systemic chemo.  COVID was still raging, so I couldn’t risk getting sick by going to the gym anymore, and I couldn’t practice hand-to-hand combat anymore because I was warned that I’d bruise and bleed easily.  Exercise became running 2-3 miles 5 days per week, and I added yoga meant to support healthy lymph activity.  I continued to teach ballet.  Diet went hardcore vegan, with zero alcohol, zero sugar (though I still ate fruit), and zero caffeine.  I lost too much weight too quickly, because I just don’t know squat about cooking a variety of vegan food.  Sleep habits improved—to bed between 10 and 10:30, sleep til 6, sometimes a nap.  I drank nearly a gallon of water every single day.  Surprisingly, I felt actually mostly normal, despite the brutal chemo.  Also, my bloodwork was normal until the very last round of chemo, when RBCs and WBCs took a slide!  My liver and kidney function remained normal in bloodwork the entire time.  Amazing!

Mid-treatment and chemo radiation:  My team begged me to add eggs and dairy to my diet, so I did, and it was welcomed by my body.  Once or twice a week, I’d have some salmon or cod.  I didn’t feel so hungry all the time!  I continued my exercise as above, sleep, and water consumption as above.  Off of the heavy systemic chemo, I added coffee (YAY!).  I fared well through this part of treatment, too—minimal side effects, really able to carry on with normal life.

Post-treatment:  Exercise is now a big ol’ variety, with running, yoga, ballet, and stretching being the cornerstones.  I have returned to my gym classes, but not as consistently as I used to, mostly due to the kids being out of school and summer travel…nothing to complain about!  Diet has continued to be primarily vegetarian, with more fish now.  I have added chicken a couple of times when others have served it to me, but I don’t particularly miss it.  I also don’t miss beef.  I feel like a traitor to my native Texas!  I have added a glass of wine very occasionally…maybe once every two weeks, probably less.  Dessert is back as I used to have it, which was never often, but yes, on occasion.  I still drink gobs of water.  I have also added a vitamin D supplement, on the recommendation of my integrative medicine doctor, as well as turmeric in my morning lemon water, and a cup of green tea in the afternoons.  I am sticking to good sleep habits and just ask for time alone now when I need it (not at 2am!).

So, things I’ve done consistently, since diagnosis, and will continue doing include LOTS of water, moderate to strenuous physical activity at least 5 days a week, a “green drink” that I have each day which includes pea protein, spiralina, moringha, hemp protein, celery, parsley, a green apple, kiwi, and oatmilk.  I also have either oatmeal or buckwheat cereal every morning with lots of berries and a handful of walnuts.  That has been a dietary mainstay.  I’ve also been drinking non-caffeinated tea since the beginning—spearmint, ginger, chamomile.

I finished chemo radiation at the end of January, had a surgery to address the liver lesions in early March, and was declared NED (no evidence of disease!) in mid April.  I can’t say if any of these things made a difference to the success of my treatment, but I do think they helped me feel pretty darn normal throughout, and for that, I’m VERY GRATEFUL.

Again, this is just to contribute to your question about diet/healthy living.  The doctors are the best people to ask for recommendations specific to you, but maybe these are some talking points that you can bring up to your team!

Again, wishing for speedy attention and answers for you!

Take care,

Red

Wow! You are a complete warrior! Thank you for such a full and detailed reply, so much to think about xxx

Hi ,

Nah, not a warrior. A cancer diagnosis forces a bunch of decisions, pretty much all of them with unpreferred choices…I just made the choices that were best for me and hope for some luck along the way…like any cancer patient.  I am just so full of gratitude for the luck that has come my way since.

I’m so glad you have the early screening results that allow you to address the abnormal cells sooner rather than later!  Yes, the choices will still be hard, but I’m hoping for lots of knowledgeable guidance to help you make the choices that are best for you!…and a good dose of luck, too!

Best wishes,

Red