Cancer newbie--stage IIIA/B

Hi Becky--

I'm very sorry that a diagnosis of anal cancer has brought you to this site and I can understand your fears.  I'm sorry that the PET scan showed the nodal involvement.  However, I have been communicating with other AC survivors for over 6 years and there are many who have beaten this disease with 3B stage cancer.  The treatment of chemo/radiation is very successful, so I hope you will try your best to be hopeful that you'll beat it too. 

Your story begins like so many others--troubling symptoms that are misdiagnosed as a bleeding hemorrhoid.  That's how mine began.  I am unable to understand how this disease remains off of the radar for many doctors, especially GI doctors and colorectal specialists, when a patient presents with rectal bleeding.    I was fortunate in that the CR surgeon I saw immediately recognized that I had a tumor and not a bleeding hemorrhoid, which was my internist's diagnosis.

I can assure you that you'll get lots of good support here.  Some of us went through treatment years or months ago and others are currently in treatment.  We often know things that the doctors don't know or don't tell you, especially regarding dealing with side effects.  We will share what we know, in hopes that your journey will be as smooth as possible.  There's lots of knowledge and experience here, so please tap into that!  

In the words of my colorectal doctor the day she diagnosed me:  "It won't be fun, but you'll get through it."  She was right and you will get through this too.  I wish you all the very best.

Martha 

When I was diagnosed as Stage 2 anal cancer in 2008 my chemo doctor advised one of my tests indicated one lymph node was enlarged.  I asked him what that meant. He said it could be enlarged due to all the tests I was having(PET, MRI,CT) or the cancer could have spread.  I asked my radiologist what the treatment plan would be and he said they would radiate the lymph node as if it was cancer.  As it turned out my cancer had not spread and I was diagnosed as Stage 2 anal cancer.  Hopefully you will have the same results.

Mike

although I had rectal cancer, but I received treatment like most anal cancer patients. Hopefully they can wife out that lymph node with radiation and chemo and you don't need further treatment. I would suggest that you get at least 2 opinions in order to make the most involved decision. I ended up with colostomy and even though it's not the end of the workd, it's very unlikely that you need it. Don't worry about possibikties until you know all the information. You are the most challenging stage of the battle now. As soon as the treatment starts its gonne get easier mentally. I wish you good luck and the best outcome.

Laz

Bjc57 said:

Thank you!

Thank you all for your encouraging words! I am finding that I have good "moments" and bad as opposed to good "days" and bad! I really appreciate all the advice and support y'all are giving--it gives me more hope that all will be well soon. I will start my chemo and RT tomorrow and really am ready to get this going. The last couple days I've mainly passed blood and clots and that has me concerned so I'm more than ready to get this taken care of.

After perusing some of the other comments on this site, I think I am a little better prepared for the side effects---Aquaphor, Zofran, loose baggy pants, protein shakes, bland low residue food, sitz bath, perineal spray bottle, Dermaplast spray, Depends (!) and WINE! I am hoping to avoid ill effects for the first week or two as I am trying to work as much as I can until I have to take FMLA. Any other advice to prepare for this journey would be greatly appreciated!

Thank you all again for your kind words. You don't know how much they mean to me. As a nurse, I don't like being "on the other side" and it is difficult for me to ask for help, but I desperately needed to hear some good news! Thank you!

It sounds like you are well-prepared to begin treatment.  I only have one word of caution about the wine.  I was not sure if alcohol could interfere with the treatment or not, so I avoided it altogether.  To be honest, I felt so bad it would not have sounded or tasted good to me anyhow.  If you decide to drink wine while going through treatment, I would first ask your doctor if it's okay.

May your first day of treatment go well and get you on your way to zapping that tumor!  Best wishes.

Martha

Bjc57 said:

Thank you!

Thank you all for your encouraging words! I am finding that I have good "moments" and bad as opposed to good "days" and bad! I really appreciate all the advice and support y'all are giving--it gives me more hope that all will be well soon. I will start my chemo and RT tomorrow and really am ready to get this going. The last couple days I've mainly passed blood and clots and that has me concerned so I'm more than ready to get this taken care of.

After perusing some of the other comments on this site, I think I am a little better prepared for the side effects---Aquaphor, Zofran, loose baggy pants, protein shakes, bland low residue food, sitz bath, perineal spray bottle, Dermaplast spray, Depends (!) and WINE! I am hoping to avoid ill effects for the first week or two as I am trying to work as much as I can until I have to take FMLA. Any other advice to prepare for this journey would be greatly appreciated!

Thank you all again for your kind words. You don't know how much they mean to me. As a nurse, I don't like being "on the other side" and it is difficult for me to ask for help, but I desperately needed to hear some good news! Thank you!

I am wishing you the best for tomorrow and throughout this journey, I will send positive thoughts and vibes your way. A few more items that come to mind are Burts Bees baby shampoo, Eucerin (the creme not lotion) for your hands and feet, Immodium, ginger ale and a hospital pad for the bed when you need to be commando. I see you have a pretty good list going already but these are good to add on. Please keep us posted.

Bjc57 said:

First day of treatment done!

Thanks again, everyone, for the advice. Bummer about the wine--I recall reading one post by a survivor stating she had a glass of wine every night. Guess that glass I had at lunch before my chemo will be my last until I'm done!

It was a long day--chemo teaching at 11:00, chemo at 3 and RT at 6:30 (one down, 32 to go!)--but I am no worse for the wear at the moment and am savoring feeling well for now!

I had an interesting encounter tonight. I have been continuously made aware of blessings on this journey. My favorite surgeon/glaucoma doctor/friend happens to be good friends with my GI doctor and also with my oncologist! He was the first person (other than my husband) that I told after my diagnosis when I was asking if he knew my oncologist (I had not heard of him). He immediately asked if he could call his friend (my onc) to put in a good word for me! Of course, I agreed! When I first met my onc., his first words were, "I've been talking about you with a lot of people!"  We hit it off immediately!  Today, I found out my chemo teacher is practically a neighbor; but the best was having a RT tech who is married to one of my former bosses that i think the world of! I had not met his wife but told her that I remember him bringing her biscuits in for us--she makes AWESOME biscuits! We were both so surprised to meet under these circumstances! I consider that just another of the many "God moments" I have had so far on this journey. God may work in mysterious ways, but He also works in wonderful ways!

Now, remind me of these positive thoughts when I am burned and tired and ready to give up!  Thank you all, again, so much for all of your encouraging words. They really mean so much! 

I'm very glad your first day went well, despite it being a very long one.

As for God putting you in the hands of friends or friends of friends, that is awesome!  You will have lots of support and excellent care.  When I was diagnosed, the second person I told about my cancer (after my husband) was my next door neighbor, who happens to be a radiologist at our local hospital.  He was so pleased when I told him who my oncologist would be and did not hesitate to contact my med onc to let him know that I was a good friend.  Dr. Mac, my neighbor, has been my angel for the past nearly 7 years, always getting me my scan results same day and taking the time to explain them to me.  When I see my med onc a few days later, he knows I already know my results and usually asks me what my scan showed (even though he knows!).  How I ever got fortunate enough to live next door to such a kind and caring friend is beyond me, but given the fact that he is also a cancer survivor himself, he truly understands how difficult this journey can be.  The day I had my port put in, he came into pre-op and told all of the nurses that they had to take good care of me because, in his words, "I love this woman!"  LOL!  He also came in during the port placement and teased me a bit while the doctor was putting the thing in my chest to take my mind off of what was happening to me.  I wish everyone had a Dr. Mac!

I think one of the most terrifying days of this journey is day one of treatment because we do not know what to expect.  I had convinced myself ahead of time that I would hurl right there in the infusion center in front of all the other patients.  That didn't happen and everything went smoothly.  I left there feeling more calm about everything. 

You will have some rough days ahead, but keep your head up and remember that this is not for long.  Six weeks is only a snippet of time in the big picture and you can get through it!

Martha

Hi Becky, 

My mum was diagnosed with anal scc in june last year. She initially presented with an enlarged inguinal node, we knew from the biospy she had cancer unfortunately we didn't know which type as the fna was inconclusive. Ct scan suggested colon so she has a colonoscopy with was clear with the exception of a few polyps with low malignant potential.  She was then sent for a PET scan with showed multiple pelvic and inguinal lymph nodes. At this stage they were going with primary of unknown origin. I had however metioned to the surgeon that the oncologist had felt a ridge at the anal verge so after a quick exam with a scope and a exam and biopsy under ga and mri the final diagnosis of anal scc stage 3b was made. Mums only treatment was radiation and chemo. She completed treatment in September and is due to have another exam under GA on the 16th of this month as they have not been able to get a good look using the scope due to bleeding issues. Unfortunately here in australia they will not do a follow-up with a pet scan.. 

Good luck 

nicotianna said:

anal cancer IIIb

Hi - Did your Mum have anoscopy?  It can be done by HRA (high resolution anoscopy).  The U of California has detailed info re:  HRA (<http://id.medicine.ucsf.edu/analcancerinfo/diagnosis/examination.html&gt;  HRA is not readily available everywhere but you can ck.  Surgery in the US is costly whether one has general anesthesia, sedation or a spinal.

Does Australia allow other tests, such as, CTs and MRIs?  Your Mum may be clear locally, but due to the positive node she could have metastasis.

My first sign of AC was an enlarged inguinal node.  I have mets to my lungs.

I hope this information is helpful rather than frigtening.

Wishing your Mum the very best!

Nic

 

Hi Nic,

Yes mum had a proctoscopy which is very similar unfortunately the view was impaired due to bleeding so she will be having what they call an EUA.  She will be having follow up mri's but has yet to have one since treatment has ceased. I believe they will be booking one at her next appointment. We are very fortunate in australia with our healthcare system and medicare so mum didn't have any costs associated with her treatment.

How are you finding treatment so far?