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Recently diagnosed at 28yrs old

LFTTF
Posts: 12
Joined: May 2013

Hello.

I am new to this site but I just wanted to reach out to people who are or have experienced what I am now going through. I was recently diagnosed with AC 3 weeks ago and I just had my PET/CT scan and MRI done this past Thursday and Friday.  I don't know what to expect from here.  I will be sitting down with my doctor on Wednesday and she will go over the scans and i'm assuming stage me.  I'm hoping for the best.  I'm 28 years old and i've been told that this cancer is unusual in someone my age. Is there anyone my age that has gone through this?  I would really appreciate any support and advice.  My doctor did inform me that chemo and radiation will be my path for treatment. 

 

-Suzzett

pializ
Posts: 270
Joined: Nov 2012

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
Posts: 12
Joined: May 2013

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

pializ
Posts: 270
Joined: Nov 2012

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

LaCh
Posts: 514
Joined: Dec 2012

Hello--

My advice is to utilize all the resources at your disposal, this site among others. The thing about this cancer, or, more precisely, this cancer treatment is that it's of a short duration.  Six weeks and you're finished with a good chance for a positive outcome.  All the people who post to this site have been through the diagnosis, treatment and/or post treatment. It can be done. It's not easy... but it can be done.  Don't be shy, ask anything that you want; chances are very good that whatever question or problem you're having, someone and probably a lot of someones have also experienced it. Trust yourself, question everything and be your own advocate. If something isn't working for you, try something else.  Six or seven weeks from now, you'll be looking back and offering a hand and advice to someone just like yourself. 

mp327's picture
mp327
Posts: 2939
Joined: Jan 2010

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! 

Marynb
Posts: 1134
Joined: Aug 2012

Hi Suzzett,

I am glad you found this site. Everyone will be quite helpful to you as you go through treatment. You are young to be going through this, but you will do fine. Easier said than done, but try not to worry. I hope that you are going to be treated at a good cancer hospital. Once you have a treatment plan and start date, you can come to this site to find out what you will need to have on hand.

You will be in my prayers! Stay Strong!

Mary

LFTTF
Posts: 12
Joined: May 2013

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

pializ
Posts: 270
Joined: Nov 2012

I didn't have any pain until after 'they' started investigating. However a few paracetamol & it eased. 

mp327's picture
mp327
Posts: 2939
Joined: Jan 2010

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!

mxperry220
Posts: 360
Joined: Mar 2011

My colorectal surgeon removed 1/2 of my tumor for biopsy.  This was the most painful part of the whole treatment process for me.  I had difficulty getting up and down the stairs to get to my bedroom.  The pain subsided in about two weeks after the procedure.

Mike

LFTTF
Posts: 12
Joined: May 2013

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

mp327's picture
mp327
Posts: 2939
Joined: Jan 2010

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.

eihtak
Posts: 849
Joined: Oct 2011

Hi, I am sorry you have found yourself in this place, yet you will feel comfort from all the support, knowledge, encouragement and humor you will find on this forum. I'm sure friends your age are having a difficult time relating to this, as you said it is considered rare in general, but especially at 28. I am 54 and 2yrs post treatment and doing well, yet I remember feeling like no one really knew what I was going through. I did not find this forum until months after treatment but sure wish I had them earlier. Remember that no question is off limits and most likely someone will have some helpful advice that you may not find elsewhere. My sister used to keep telling me to just look ahead to something happening in the months after treatment and focus on that. 

I will keep you in my thoughts and prayers as you get through this. 

jj65
Posts: 2
Joined: Nov 2012

so sorry to hear about your diagnosis. I am a male, 66 years old and have had a colonostomy because of it , non reversable. You have my prayers and if there is any time you need to talk about what you are going through  just email me at moduckhunter@sbcglobal.net  and ill send you my phone number   its been 17 months since my operation and i am doing ok .. no more cancer , and once you get use to it the bag isnt that bad .  at least for an old man and as young as you are , just keep your head up there is nothing to be ashamed of  , it just happens and we have to learn how to go on with life as best we can . gosh lots of Gods blessings on you as you go through all of this   sincerely John

shirlann54
Posts: 161
Joined: Aug 2011

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

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