Head is spinning

Wow! Lots of information here. More than I ever wanted to know but now have to. Just diagnosed. CT abdomen tomorrow and meet with med onc, rad onc and surgeon next week. Doesn't feel real. I am a nurse so I basically get the medicine and treatment regimen. I haven't told anyone yet. Plan to tell my grown daughter tomorrow. Divorced so it's just me and my dog. Rest of family live in different state. Maybe I'll feel a bit better when I tell a few people. I have just wanted to be that person who doesn't have cancer in their eyes a few days longer. How do you cope before you're staged? Feel like my head is spinning off!

Becky threw a punch at your cancer.
Janice, Julie sent you a prayer.
3 people sent you a hug.
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I was diagnosed Stage 3 on January 6, 2017. My degree is in Biology so I pictured the cancer cells in my lymph nodes going everywhere in my body. I was a wreck waiting for treatment to begin February 6, 2017. The doctor prescribed some antianxiety medicine and it helped. I felt better mentally once treatment began. I read the blogs here and learned more than I ever wanted to know about anal cancer. Many said the treatment is brutal but doable. I did it and I passed my one year mark NED in March 2018. My husband went to work everyday and I stayed home for four months with our four cats and two dogs. I could not have done it without my pet therapy. They are very good listeners. We live 45 miles from the treatment center. My husband dropped me off every morning, five days a week for six weeks. My co-workers took turns driving me home so my husband could go to work. I am grateful I did not have to work through treatment and recovery. You will feel better when you talk to your daughter about it.
Hang in there. Glad you found this group.
I think I lost 8 lbs that week I was diagnosed. Couldn't eat or sleep. Doctor sent me some valium and that helped a bit.

I'm so sorry you're going thru this. You say you live alone...do you have someone to help you during treatment? Towards the end, I wasn't able to drive myself to treatment.

Welcome to this group, but sorry your diagnosis has brought you here. I hope you will find this site very supportive as you begin the journey. I hope that your scan will show no spread and that the tumor is localized. I was diagnosed in 2008 with a tumor that was right on the fence between stage 1 and 2. Ten years later, I'm still here and doing well. I hope in 10 years, you can say the same thing. This group of great people will be here for you virtually. Ask questions and seek advice when needed--we will try to help you. Also, get someone lined up to help you out if needed. As Mari mentioned, the last part of treatment can be tough and you may find it too taxing to drive yourself to treatment or do other daily tasks. The good news is treatment is a short course of typically 6 weeks. You will get through this and if you need some virtual encouragement, we are here for you. I wish you all the very best!
Thanks so much for your support! My CT was clean so that was a relief. I will see rad onc tomorrow and surgeon on Thursday. Told my daughter and she is ready to help me fight. She is big into nutrition so has taken on the task of this research. My best friend from high school is coming to stay with me until the end of September. I'm assembling my support team which has helped ease some of my anxiety. Do you know of anyone who has had Proton therapy for this? University of Florida offers it but told me they have no protocol for this type of cancer. Have your after effects from treatment been a big problem? Not that I have a a lot of choices but it is so hard to let them poison all my healthy tissue to get at that one tiny area. Especially when I feel perfectly fine. I'm sure a lot of my questions will be answered soon but I would like to connect with a few people who have endured this as I think that will be my life line going forward. I am contemplating getting a second opinion at Moffitt Cancer Center in Sarasota. Did most everyone seek a second opinion even though the Nigro protocol seems to be the only definitive treatment? I am not good with blogs. Can everyone see this and what are trolls?
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I'm glad you are going to have some help while you are in treatment. I don't think I would have been able to do some things for myself towards the end of the 6 weeks, due to pain and fatigue. I have heard of some people receiving proton therapy for anal cancer, but I don't know them personally and do not know what their outcome was. I did not seek a second opinion, but many people do, especially if their doctors are not well-versed on the treatment of anal cancer. I was fortunate in that my doctors were, so I was treated locally. I felt just fine too when I got my diagnosis, except for a few symptoms related to bowel movements. I'm glad you got good news on the CT scan and I hope you are feeling ready to tackle this beast!
Sorry to welcome you to this group...but as others have said there is tremendous support here. You can get through this!

See my website where I hope you will find something of help. I was lucky to be very close to my treatment center and could mostly drive there myself but it is wonderful to have company. I had a second opinion because, in part, my wonderful oncologist insisted that I do so, to ensure that I was completely onboard with the treatment and his oversight of it. You will not find trolls here, we talk to each other privately and others not part of this blog will not be here commenting. And you can send private messages to just one person as you need to.
Quick note: you wrote « surgeon ». This alone is important for 2nd opinion because this cancer does not recommend surgery IF there is no obstruction. My tumor was more than 5cm and it went away with the chemo -radio regimen. Two years now NED stage 4. ...
I just saw your post of July 24. I had pencil beam scanning proton therapy at the University of Pennsylvania.

I also had 5FU in pill form--capecetabine/Xeloda 5 days a week concurrent with radiation and an infusion of MitomycinC on Day1 (most people also get one infusion during the last week if they have been taking 5FU in pill form.
I wanted the pill rather than the infusion and fanny pack..

There are several chemo protocols, in addition to the Nigro protocol, listed in the NCCN Guidelines. I was treated in 2015 and most people were receiving the Nigro protocol. I have noticed that recently many are receiving the 5FU in pill form (recent research from Sloan Kettering and other centers indicate less toxicity and similar outcomes)

My side effects during treatment were typical: fatigue, no appetite, urinary frequency and urgency, pain and discomfort in the areas being radiated, dehydration,diarrhea, and the last week and a half I got hand and foot syndrome from the Xeloda (NOT everyone gets this and it fades after the meds are stopped)skin area burned, but no blisters or bleeding.
I did not have nausea or vomiting or mouth sores...my hair thinned, and a month or two after treatment it was shedding, but I never lost a large amount. My white count didn't crash, so I avoided having to take a treatment break.

My main late term side effects involved the bladder and the bowel. It took awhile for the "frequency and urgency" issues to subside. I always had to be aware of where there were rest rooms. I am 3 years out and am basically ok, but I know the radiation has effected the bladder (a few leaks sometimes and greater frequency) I always had a tendency to be constipated (except during treatment when I had diarrhea), and now I am more constipated than before.
My appetite is ok and I have no problems eating everything .

It's a very unpleasant beastly treatment, but it is only 5-6 weeks. the last 2 weeks and a week or two after are brutal and then things turn around and healing begins.

As others have said, it is doable and we are hear to tell the tale and offer information and support. Please keep us posted as to how you are doing.
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Vital Info


July 18, 2018

Cancer Info

Anal Cancer

Squamous cell

July 17

Stage 2

Grade 2


It pulls the rug out from under you


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