New to the Anal Cancer Group

Hi DeeA  & welcome to the Macmillan Online Community although I’m really sorry that you’ve had the need to find us. It’s good to hear that you’re through the treatment with a good response. I can completely understand the worry that it causes when other things are mentioned as in your case with the liver cysts. Have your Dr’s not suggested if they will investigate this further? If not I would give them a ring & ask the question, explain how unsettling it’s been for you receiving this news & they may be able explain a little more thoroughly.   It’s good that your tests so far have come back negative but it sounds as though you need more reassurance. 

Regarding more information on HPV, as I understand once you’ve come into contact with HPV (as most people that have been sexually active will have) then the vaccination won’t be of much use this is why our youngsters here in the UK are vaccinated in their early teens as the vaccination stops the transmission of the virus. I’ve heard of a few people that have had the vaccination following a HPV related cancer diagnosis but most of these have been overseas. I’ve never asked about the vaccination as I’m unaware whether my cancer was HPV related or not, I did ask but was told my particular hospital don’t test biopsies etc., for HPV as it doesn’t alter the treatment options moving forward. Again I would discuss how useful the vaccination would be in your particular case with your treating team. 

Follow ups seem to be a little different depending on your treating team/hospital & I think possibly the severity of your diagnosis. I had my treatment as part of a clinical trial therefore my follow ups were dictated by the trial protocol. I had 3 monthly check-ups for the first year to 18 months then went onto 6 monthly checks for 2 years then to yearly checks for the last 2 years of my surveillance but as I’ve said different teams & hospitals do work slightly differently. My oncologist did tell me what my follow up schedule would be but as I say that was also dictated by the trial. You have every right to know what to expect from your surveillance schedule & your oncologist/colorectal surgeon should be able to provide you with this. 

I hope you get some answers soon that helps give you a little more peace of mind. 

Nicola 

Thank you I appreciate all of your information...

Hello DeeA

Another welcome from me, but I am sorry to hear that that you are going through the confusion that many of us do after a cancer diagnosis and treatment.  I have no medical knowledge but my experience was on seeing the oncologist after my second scan she said the cysts in my stomach hadn't changed.  I was so shocked, this was the first I had heard of these and I think she saw my face and hurried to explain that if every person (without cancer) were to be scanned most would have small benign cysts somewhere in their body.  Because we are under such close surveillance existing benign cysts are flagged up.  She said they weren't worried as mine hadn't increased or decreased after treatment which, if cancerous, would have.  So I would think that they will measure these liver cysts again after your next scan just to make sure.  But I know how concerning these observations can be for a the patient, I am very hopeful that they really are nothing to worry about.

I have't had foaming urine - lots of other things but mainly to do with my back passage and hip ache.  I think we are all left with after effects after radiotherapy and the best advice I could give is to flag it up when you see the team treating you so that you can be checked.

Because I had metastasis I have a CT scan every three months and every six months I also have an MRI scan.  I always get into a frazzle around scan times, but at the same time I am relieved that the surveillance is so thorough.

I am so pleased to hear your scans are clear, but please mention all your concerns on your next visit - I think sometimes consultants are so familiar with all the jargon and procedures they forget that they are talking to someone who has no medical training.

Please chase it all up!

Irene xx

Hi,

Thank you so much for contacting me. I feel the need for support. I hope I never have to go through this treatments again.

Hi again DeeA ,

You've come to the right place for support, this forum was the one thing that made me feel I wasn’t alone when I had my diagnosis & I buddied up with a lovely lady I met here that went through treatment the same time as me which helped immensely. Just having another person to validate the feelings I was having because they’d been there too made me feel so much better. 

Receiving a cancer diagnosis & going through treatment can be such an emotional rollercoaster. I have really close friends that once I’d had my first lot of post treatment scans & received the results that I was NED they naively thought that was it, it was all over & done with & I was good to go! They stopped asking how I was so subsequently I stopped telling them when I had further check-ups! They obviously weren’t aware of everything else that goes hand in hand with this including the sometimes constant worry & the lasting repercussions of the treatment & I hope they never will. 

I’m not sure where you are in the country but many towns & cities have Maggie centres. I’m from the North East & received my treatment at the NCCC at the Freeman Hospital in Newcastle. I was lucky that there’s a Maggies just in the hospital grounds. Maggies offer lots of cancer related services including self care courses, financial advice etc., they also have cancer specific counsellors that can provide sessions for people that feel this would be of some help either during or after their cancer diagnosis or you can just drop in for a coffee & a chat with others that will understand what you’re going through. A few of our members here have accessed counselling post treatment, some through services such as Maggies or local cancer services & others through their GP’s & have found it really helpful. 

Please keep talking & chase up your medical team for some clarity & reassurance on next steps. We’re here to help support you however we can. 

Nicola 

Hi, Actually Im in the US. I have Ann's Place which has been great. I appreciate hearing from other people with anal cancer. Our forums are thin. So your group is great! Thank you

Hi again DeeA , we have a couple of ladies from the US that are active on the forum, maybe they’ll be happy to share a bit about how their surveillance went although I suspect it’s the same there as here though, it’ll probably depend on your individual treating team & hospital as to how your follow-ups are scheduled. I’m so pleased you’ve access to something similar to our Maggies & that you’re finding this group helpful. 

Nicola 

Hi,

Thank you...

Hi Dee A,

I'm amazed at how many scans everyone else gets! I finished treatment in March '22. I go in next month for my SECOND scan. Every other check has been a DRE or an anoscopy. So, no cysts reported as of now.

The ship has sailed on the HPV vaxxes. They're for the young 'uns.

I see you're in the States too, so maybe you and I can hunt down some of the wonderful-sounding After Effects Clinics our English compadres enjoy. I asked my chemo doc and my gastro doc about these, as I've been having some After Effects, but they both look startled and said they've never heard of anything like that. Mostly I get the impression that all my docs want to hear from me is I'M DOING GREAT!!! and anything that is even vaguely a 'complaint' is just ingratitude. I've actually been replied to with 'Well, it's better than having cancer, isn't it?'

I'm feeling largely on my own out here. Fortunately my After Effects are manageable, but I'd love to do even better!

Hugs

Suz