Newly diagnosed

Kat7

I am so sorry that your diagnosis has brought you here, but I promise you that you are among friends and people who can understand like no one else what you are about to go through.  I am nearing 6 1/2 years post-treatment and I hope that gives you lots of encouragement.  This disease, although considered rare, has high rates of successful treatment, so you have every reason to be hopeful that you will beat this disease!  It sounds like it's been caught early, which is definitely in your favor.  I know you are shell-shocked by your diagnosis, just as I was when I was told I had cancer, and it's easy to see nothing but doom, but believe me, you can and will get through this.

It sounds like your medical team is getting right on this and working quickly to get you staged and ready for treatment.  It took 6 weeks from the time of my diagnosis until I began treatment and it seemed like an eternity.  I hope that won't be the case for you.

I'm glad you are reaching out for support.  I did not have the benefit of this site or any others when I went through treatment and it was both scary and lonely!  We are here for you!  This is a great group of people who often have more useful information than what you'll get from doctors and nurses.  We've talked about most things related to this disease and there's no holding back here if something needs to be discussed, even if your real-life support team of family and friends don't wish to hear such things.  Ask us whatever questions you may have and someone will most likely know the answer!

Treatment, as you probably already know, can be challenging but you will get through it.  Staying well-hyrated and taking meds to stay ahead of any pain are key to making this ordeal as least traumatic as possible.  Of course, there are lots of other things and we will help you through all of that.  You mention that you are a take charge kind of person, which is not a bad thing.  You must be able to speak up and demand answers from your medical team if they are not forthcoming with them, as some people experience.  I was fortunate in that I've not had to deal with that.  Putting my life in others' hands was difficult for me, but I trusted all of my doctors and they always paid attention to my needs and answered my questions.  I hope you'll be in good hands!

Please keep us posted on how all of your staging goes and when you might begin treatment.  I'm sorry you have to be here, but I think you'll find great support.  Take care.

Martha

Kat7

Welcome to our supportive family.  I personally feel blessed that I found this forum because this diagnosis is a roller coaster.  It goes by quickly, but seems to take forever to get going.   I am a year (almost to the day) out from finishing treatment.  And that is hard to believe!

You will get through this and we will help.

Sending a virutal hug and strength to you as you navigate through setting up your treatment plan.

Judy

judyv3 said:

Kat7

Welcome to our supportive family.  I personally feel blessed that I found this forum because this diagnosis is a roller coaster.  It goes by quickly, but seems to take forever to get going.   I am a year (almost to the day) out from finishing treatment.  And that is hard to believe!

You will get through this and we will help.

Sending a virutal hug and strength to you as you navigate through setting up your treatment plan.

Judy

My biggest blessing was

My biggest blessing was finding this forum when I was beginning treatment.  No kidding,  this is one of the best resources for finding the things you need at whatever stage you are in.  These folks have been there, done it.  If they have not done it they will help you research it and somehow find an answer or where to look for one if at all possible.  The past posts on this forum are a plethera of information on just about every part of the journey.  I consider myself a newbie but, in the area of the initial treatment now that I have completed it all :chemo/radiation......I think I can chime in now!!!!!  

I agree that in the beginning it is so overwhelming and seems like it will never end.  But, when it is over it will take a few weeks to realize that it was like a blep on the radar.........and your many of memories will be fuzzy.  That might be due to the pain killers and such which you WILL NEED!   Don't be like me and try to be stoic thinking I could do without.  BIG MISTAKE!   This is one time you need to yeild to the little pill or pain patch which ever they give you. 

But, most of all there will always be someone here to talk it over with or just share what is going on.  Just know......we have been there ......and back!

Kat7 said:

Thank you all!

As I saw that I had replies to my post, I began to cry tonight. It means so much to have your knowlegde and support and I thank you all for your encouraging responses and I am blessed to have found you early on. I will post again as I move through the staging and treatment process. I am hoping to be able to begin treatment soon but don’t know about how healed up I might have to be to begin the process as I am only 6 days post-op now. 

 

I do have confidence that I am in the hands of a team that will take care of me and be effective and responsive to my needs, questions, etc. My previous experiences with my HMO, who I have had for 25 years, has been very positive (including a melanoma detection and surgery cure 10 years ago) and they are absolutely some of the best in efficiency and knowledge.

Hugs to to all,

 

Kat

Hi Kat,

I was diagnosed stage 3B anal cancer in April.  Do your lab results say squamous cell? that's what my lab showed and, come to find out, as was brought to my attention by one of the angels on here, it responds well to treatment. This won't be a picnic but you can do it.  I've had 2 follow ups since treatment ended, and they've been clear!

June

 

Kat7 said:

June

Hi June,

Yes, it is squamous cell. There is also some mention of lymph tissue space involvement( not the exact words but the jist) in the pathology report and that has me worried. It has been bit of a roller coaster because the first biopsy was  diagnosed in situ stage and the thinking was they could excise the tumor and get clear margins but tumor is "deeper than expected" and they can't cut anymore because of sphincter involvment and the margins on what they did excise were not clear. I am praying for early stage but evey pain in my stomach, back, etc. I am, of course, worrying that it's spread. Worrying will not change the outcome and I am trying to find my patience as best I can!  

CONGRATS on your clear follow ups, that's wonderful

 

Kat

Kat7: staging after the info is in.

There are a number of people on this forum who have been treated for stages III-a, III-b, and even IV, of IV.  I was stage III-a for sure due to rectal node involvement, and possibly III-b. (PET scan was mildly suspicious about bilateral inguinal nodes, but they were never biopsied.) Radiation oncologist treated me as though I were stage III-b.

This National Cancer Institute site explains staging: http://www.cancer.gov/cancertopics/pdq/treatment/anal/Patient/page2

Explains the TNM system: http://www.cancer.gov/cancertopics/pdq/treatment/anal/HealthProfessional/page3

So, don't get shook up. (Easy for me to say, right? ) Most people are succesffully treated and continue on.

Ouch_Ouch_Ouch said:

Kat7: staging after the info is in.

There are a number of people on this forum who have been treated for stages III-a, III-b, and even IV, of IV.  I was stage III-a for sure due to rectal node involvement, and possibly III-b. (PET scan was mildly suspicious about bilateral inguinal nodes, but they were never biopsied.) Radiation oncologist treated me as though I were stage III-b.

This National Cancer Institute site explains staging: http://www.cancer.gov/cancertopics/pdq/treatment/anal/Patient/page2

Explains the TNM system: http://www.cancer.gov/cancertopics/pdq/treatment/anal/HealthProfessional/page3

So, don't get shook up. (Easy for me to say, right? ) Most people are succesffully treated and continue on.

Additional website

I would like to add one more website to the two that Ouch has mentioned.  The National Comprehensive Cancer Network's website has the most up-to-date protocol for treatment of anal cancer, along with lots of good information on staging, treatment and follow-up.  You will need to do a quick registration, but that will allow you access to all of this good information.  There website address is:

www.NCCN.org

Martha

TraceyUSA said:

An unfortunate welcome to you, Kat7

I, too, was blown away by this diagnosis.  I was T2 or 3, N0, M0 (this is how some doctors "stage" this cancer, it is T - turmor size, N - nodes involve, M - metastisis).  I am approaching 2 years post treatment.  I just had a MRI and it looks good.  I have EUA (exam under anesthesia) coming up on Friday. 

I did not find this site until after I finished treatment (which I have not decided if that was good or bad) but I have found the information extremely useful and the members very open and caring.

The others have all given you good advice, I would like to add that everyone reacts differently to treatment.  Some may have many side-effects and some have fewer and to varying degrees.  I did not need pain meds but ate Imodium like they were M&M's.  I lost most of my hair, some never lost any.  Try not to expect things to happen, deal with them when they do.  I you have a question, don't be afraid to ask.

Good luck to you as you begin this process.  As it's been said before, this treatment is not easy but it is doable.

Positive thoughts and prayers,

Tracey

Kat7

Hi Kat,

Being newly diagnosed is an emotional & scarey time. I was lucky enough to find this fabulous site before I started treatment & I am sure that all the advice given made my journey easier. I am almost 2 years out (with a follow up appointment with colorectal surgeon tomorrow).

I browsed previous posts and made note of what had been helpful. It allowed me to make any necessary purchases & also what would be helpful at which stage of treatment. 

It'd a tricky time to say the least, but it IS doable. Compared to other cancers, the treatment is of short duration. 6 weeks seems a long time, but think back to what you were doing 6 weeks ago. Doesn't seem so long does it?

Knowledge is power. Inform yourself as best you can, & take it day by day. Any questions, just  ask. We are not shy here.

Best wishes

Liz

pializ said:

Kat7

Hi Kat,

Being newly diagnosed is an emotional & scarey time. I was lucky enough to find this fabulous site before I started treatment & I am sure that all the advice given made my journey easier. I am almost 2 years out (with a follow up appointment with colorectal surgeon tomorrow).

I browsed previous posts and made note of what had been helpful. It allowed me to make any necessary purchases & also what would be helpful at which stage of treatment. 

It'd a tricky time to say the least, but it IS doable. Compared to other cancers, the treatment is of short duration. 6 weeks seems a long time, but think back to what you were doing 6 weeks ago. Doesn't seem so long does it?

Knowledge is power. Inform yourself as best you can, & take it day by day. Any questions, just  ask. We are not shy here.

Best wishes

Liz

6 weeks or more.

pializ wrote: "It'[s] a tricky time to say the least, but it IS doable. Compared to other cancers, the treatment is of short duration. 6 weeks seems a long time, but think back to what you were doing 6 weeks ago. Doesn't seem so long does it?"  [6 weeks = ~42 days, including weekends & holidays]

From observation of forum posts here, it seems like the big majority of anal cancer sufferers get throught the six week treatment plan in that six weeks, in spite of nausea, weekness, and radiation burning. I hope that you are able to get through it speedily, also.

However, there are people who have more difficulty. Unfortunately, that is also not unexpected. In my case, I started on April 22nd and finished on July 9th.  [= ~78 days, including weekends & holidays] The reasons are because 1.) I was very sensitive to one or both chemo drugs: I quickly developed neutropenc fevers x 3 (therefore three hospitalzations, the last one for 9 days) and 2.) I was in severe pain from the radiation burns of my poor, delicate, gentle, innocent anal tissue (I had to take 3 more breaks in addition to the ones imposed from the hospitalizations).

The main treatment of anal cancer is radiation - doses x ~30 (the chemo supports and enhances the radiation). What counts is the total dose of radiation received, not how fast you get them. Therefore, if you find you must take treatment breaks, don't be concerned; rest, heal, proceed again when you are able. It's not a race!

IMPORTANT TIP: Never put any ointments on the skin of your pelvis, rear end, upper thighs, or into your anus that's not authorized by your radiation oncologist. Some can effect how the radiation enters your tissues.

sephie said:

slight difference in tx protocol

just to let you all know..... MD Anderson did say that it matters if we take a break in the radiation..... i was so sick and weak that i was run thru ER to intensive care to regular room..... radiation oncologist came to my room and told me that if i could do it they did not want to take a break on the radiation tx..... they wanted to do it as scheduled in order to be more effective.... i said yes but they had to roll me in to the radiation area on my hospital bed , lift me up on table , and finish the radiation. with both arms hooked to IV's........ so hospitals and docs have different ideas....... thx...sephie

sephie

My rad onc offered me a break, but I refused.  I wanted to just plow ahead and get it over with.