Recently diagnosed at 28yrs old

Hi Suzzett. I am sorry that you have had need to find this site. That said, there is a wonderful support network here & you will have heaps of appropriate advice as and when you want. Just ask......... anything! I am not in your age group (60 tomorrow in fact), & not sure of any younger people affected by this diagnosis. I hope your scans are good! I completed treatment 25th January this year, stage , & I am doing ok. Next checks due in June so a bit of a worry holiday til then.  Liz

LFTTF said:

Thank you

Thank you Liz!  I never thought I'd be at this site as well, but I'm so glad I came upon it.  It's difficult enough being diagnosed with this but even more so not being able to find the right comfort amongst my friends.  Don't get me wrong, they do support me and will be there for anything, but their understanding isn't the same as people who have experienced this. But it was such a relief to find others going through the same and now I don't feel as alone.  And just reading through and. seeing all of these great stories is very comforting as a matter of fact.  I do wish well for everyone though.  I'm hoping for good news on this next visit but just scared of what happens next.  I'm glad to hear your outcome is good!  I hope the very best for you and I will keep you in my prayers.

Suzzett

It is a scary time. The treatment is roughly the same for everyone withanal squamous cell carcinoma. It is short, sharp & doable.  Once you begin treatment you will be surprised at how quickly it goes, & you will cope! I live I  the UK & am on a similar site there. Macmillan. It really helps to have support of those ahead of you, & a privilege to be able to offer support to those following. I had a picc line inserted for chemo. It wasn't nearly as bad as I had anticipated. It is just that everything is new and not knowing what to expect. I was lucky, and whilst it is no walk in the park, I coped well. I think that taking some of the hints & tips from both sites helped me prepare & so I felt more in control. You could look at NCCN site for treatment protocol. I am sure someone will chip in & provide tge link (Martha can you hear me?). As supportive as friends and family are, they can't possibly understand our journey, but come here anytime. Try Macmillan too if you want. They also have anal cancer group. Wishing you well & realise you CAN do this x

I'm sorry your diagnosis has led you to this site.  At 28 years old, you are quite young to be handed this diagnosis.  However, anal cancer has very good rates of successful treatment in the majority of cases.  Once you are staged after the scans, you and your doctors will come up with the treatment plan and I hope you can get started ASAP.  If you are in a quest for as much information as you can get about this disease and the treatment, I have a few website addresses that I will provide for you.

The first site is the National Comprehensive Cancer Network.  The address is www.NCCN.org.    There's lots of information on this site.  You'll need to register first, then you'll have access to the most up-to-date treatment protocol. 

A friend of mine, who I met compliments of anal cancer, has a site that is very informative.  The address is www.analcancerhelp.info.  She has complied lots of information on dealing with side effects, based on the knowledge and experience of others who have gone through this treatment.

The Anal Cancer Foundation also has a website.  www.analcancerfoundation.org.  This site was begun by 3 siblings who lost their mother to anal cancer a few years ago.  There are lots of good links on this site and some very helpful information.

I know this is a very scary time for you.  Fear of the unknown is very powerful.  However, there are so many of us here who have already taken this trip and we are here to help you.  We can tell you what worked for us in dealing with side effects.  Each person is different, so it becomes a trial and error thing.  But I truly believe the people here know much more that can help you in that regard than your doctors or nurses.  We've been there, done that!  Let us know what you need and we'll tell you what we know.  Please keep us posted on the scan results and when you might begin treatment.  I wish you all the very best.  You can do this! 

LFTTF said:

A few questions...

Thank you everyone so far for your support and kind words.  My mood has lifted so much from the time I posted on here earlier today.  I was curious and had a few questions that i'm hoping was similiar to others.  I should have added this into my earlier post but did not think about it at the time. 

Did anyone notice any early on symptoms before finding out??  And also, a few days after I had my flex sigmoidoscopy done and a biopsy taken I've had pain all the time.  The pain use to not be as bad, it was actually quite tolerable.  But since then it's been painful enough to keep me up at night.  It was suggested that I take Motrin which has helped considerably.  But I was really curious if anyone has experienced the same or similar.  Any input would be much appreciated.

 

Suzzett

Having a biopsy in the anal canal can definitely cause pain.  I'm not sure which type you had, but one is called a "punch" biopsy, which involves using an instrument to actually punch out a tissue sample.  In my mind, I picture something similar to using a paper punch to make binder holes in a piece of paper, but I'm not sure it's anything like that.  However, I do know that many people experience pain after having this done.  One of the very unfortunate things about having anything done to the anal canal is that your body keeps functioning, as in having BM's, which doesn't allow for very swift healing if you've had any type of incision or disturbance of the tissue.  Keep up with the Motrin or ask your doc for something prescription.  I was given oxycodone after I had 3 small anal warts removed a few years ago and it controlled my pain very effectively.  I hope you heal quickly!

LFTTF said:

Thank You
Thank you all for the information. It is very helpful. I have an appointment with my oncologist this Wed and i'm hoping for good news. She will be going over my scans with me and i'm assuming is when i'll be "staged". Then from there I will begin my path of treatment. Is anyone familiar with continuous infusion chemo?? She did mention that being an option followed by radiation.

Thank you all again for your support! I'm so glad I found this site this early on in my diagnoses. I will post my progress as I go along.

-suzzett

I believe most or all of us are familiar with continuous infusion chemo.  The normal chemo regime for anal cancer is 2 rounds of chemo, each consisting of 1 infusion of Mitomycin on day 1 and a 96-hour continuous infusion of 5 Fluorouracil, which takes place days 1 through 4.  This is delivered by a chemo pump, which is a small device worn in a fanny pack that periodically delivers a small amount of the chemo drug into a port or picc line via IV line.  Once the bag containing the chemo is emptied, the pump is removed.  This process is normally repeated on days 29 through 32.  While this might sound scary, it's really not.  It avoids the necessity of hospitalizing someone for 4 days while they receive chemo.  The only limitation may be with bathing while the pump is on, but lots of people manage to find ways to do that!  I took sink baths. 

I urge you to register on the NCCN site, as I referenced above, so that you can have access to the most current treatment guidelines and protocol.  Print them out and take them with you to your oncology appt. so you and your doctor can both be on the same page about your treatment.  Let us know how it goes.

I'am So sorry you have to be here .But we will be here for you.I'am 59 i have been out of treatment 2 years.You can do this