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Need guidance, your expertise, and perhaps a little piece of calmness

azkookie18
Posts: 22
Joined: Jul 2010

Hello,
My mom went into the dr. as she was complaining of what she thought were hemmorrhoids.
On June 23rd, she was diagnosed with anal cancer. Though the word cancer scared the living life out of the family, we were a bit relieved after finding out that this rare cancer generally had a better than average outcome.
Unfortunately, PT scan last week identified that it has spread to the lymph nodes and liver.
From reading up on stage IV, it has been identified as "uncurable". Is this indeed the case?
I am in shock and, perhaps denial, to believe this especially after speaking with the doc on Friday. He mentioned that this news was not good but he was still hopeful that the chemo/radiation treatment would shrink the growth on the liver and ultimately and hopefully, they could go in and remove it surgically.
My mom is 57, celebrated her bday just last week, so of course, this is the worst thing to have happened to us. I am in awe of her strength and courage through this pain. She has been holding our family's hand and provided encouragement. I am praying for the best but fearing the worst.
I'm reaching out to this discussion board for some positive stories for those who may have been in her shoes in hopes of a miracle.
She starts chemo (1x week for 6 weeks of toxol/platinol) and we are awaiting on timing of her radiation treatment.
Thank yoou in advance for your insight and all the best wishes that you're beating this awful thing called cancer.

z's picture
z
Posts: 1272
Joined: May 2009

Hi,

Welcome, I'm sorry you have to be here. Yes there are several stage IV survivors. I know of 4 that post on this forum. 1 has had liver resection, and another has had the chemo that took care of the liver too. Yet it was a different chemo than what is used for the anal cancer. They are both showing NED (no evidence of disease).

We also have the person who started the anal cancer discussion board, who is under going treatment at this time. Hopefully they will all respond to your post. In the meantime I will post on some of their threads so they will come to the top, for you to read.

Lori

z's picture
z
Posts: 1272
Joined: May 2009

The last one I replied on has all 4 survivors stage IV on there, with a great explanation from Winnie on her treatment that cured her liver.

pjjenkins's picture
pjjenkins
Posts: 173
Joined: Mar 2009

Hi, Azkookie,
I was the mom diagnosed about 2 1/2 years ago though not stage 4 and no mets. I just want to let you know how very key my family's support was to me going through treatment. I know they were afraid, too. We had some difficult but wonderful conversations about our lives and love and I hope you all will, too.

I am so glad Z went through and pulled to the top the conversations most pertinent to you, your mom and your family. The people on this board are great and soooo supportive. I am glad you found us.

There is plenty of room for hope! Bring you and your mom back here whenever!

Thoughts and prayers,

Priscilla

nonichol's picture
nonichol
Posts: 114
Joined: Jul 2010

Hi,
I am stage iv also. Two docs treating me say the can still cure me. Wishin you and your Mom the best. I know cancer from both sides as my Father died from ling cancer. I think his cacer was harderer on me than mine is. Although treatment is not great fun.
Take care,
Norma

azkookie18
Posts: 22
Joined: Jul 2010

Norma, wishing you all the strenght and the best with your battle.

JDuke's picture
JDuke
Posts: 443
Joined: Nov 2009

I am sorry that you have the need to be here, but glad you found us. I am currently undergoing chemo for metastasis to my pleura (lining around the lung). They are using a "cocktail" of carbo/taxol. In addition, I had a metastasis to my liver which was not operable. It was treated with stereotactic radiation, which was deemed very successful.

Have you inquired regarding how many cases of anal cancer your Mom's doctor has treated? It IS a rare cancer and many oncologists have seen very few, if any, cases.

If you have any questions that I could possibly answer, don't hesitate to ask.

Warm regards,
Joanne

azkookie18
Posts: 22
Joined: Jul 2010

Hi Joanne,
No, I have not. Perhaps I should've when we met w/ the doc on Friday but it was too much to process. All I heard was stage IV, don't think about the stage though, we start treatment ASAP.
We are meeting with the doc again after her 2nd chemo next Tue and I'll make sure to inquire.
I have been carefully reading all of your stories, including yours and will share this with the doc.
Thank you for your insight, it is much needed during this horrible time.

Best of luck and I hope you're gonna be bringing back some great news from your pet scan in a couple of weeks!

dasspears
Posts: 233
Joined: Feb 2009

that the reason this cancer is more treatable/curable is because it tends to be squamous cancer, not the adenocarcinoma. So you might ask the type of cancer as well. I was Stage 1 and I've been NED 29 months now.

azkookie18
Posts: 22
Joined: Jul 2010

for your warm thought and insight.
My mom had her first treatment on Tue and a port put in couple of days after. She tolerated the chemo surprisingly well. She had more energy than any of us it seems.
We are still waiting for radiation (they told us that they'll start till the 23rd??!)
I'm not sure WHY they are waiting so long but it was hinted that the doc was busy?! Um, if that's the case, why aren't they sending her to a different radiation doc?
Frustrating if that's the case. I'm going on Tue to her appt w/ the oncologist to get a better understanding and otherwise, will get see a radiation onc at a different office.
Do you guys see any issues w/ the oncologist and the rad being at different offices??
She is going to a cancer center in Phx .
All the best!

cujuja4evr
Posts: 106
Joined: Jul 2010

Hi and welcome! I'm fairly new to the board. I was diagnosed with anal cancer in April of this year, completed my treatments and am in recovery. So sorry we had to meet like this, but glad to meet you anyway! I had my chemo treatment at Virginia Cancer Institute and my radiation at a local hospital. As long as it got the job done is all I care about. It may be a little inconvenient having to go to two different locations, but I'd walk across a desert at the hottest time of day without water if it meant that it would cure my cancer! Hang in there! Glad you're able to get the support that you need. Let us know how your mom is doing, K?

mp327's picture
mp327
Posts: 3114
Joined: Jan 2010

My medical oncologist and radiation oncologist were at two different facilities and that caused no problems for me. They constantly kept in touch with each other. Every Monday when the med onc's office tested my blood, they always gave me a copy of the report to give to my rad onc later in the day during my rad treatment. I think as long as there is good communication between your mom's two docs, it will be just fine. I wish her the very best!

z's picture
z
Posts: 1272
Joined: May 2009

Hi,

Because your mom is having a different chemo treatment, than the standard (Nigro) of 5FU and myto for anal cancer, that might be why they are not starting the radiation on the same day as the chemo, but you should certainly find out why.

I had my treatments at 2 different facilities, and like Martha I was given a copy of the blood work to take to the radiologists, although the radiologist was sent all my records for his file.

I wish you and your family well. Lori

azkookie18
Posts: 22
Joined: Jul 2010

I'm scheduling a meeting with Mayo to get a 2nd opinion and also walk with them thru the process.

melbas's picture
melbas
Posts: 43
Joined: Jul 2010

I am so glad you joined our group...for questions, answers or just support. I, too, had been complaining about bleeding hemmys and my doc gave me some creme. I travel for work 2 and 3 weeks at a time, so I'd end up in whatever ER wirh the same results. Cremes, stay off it, which meant time lost from work. This began in December 2009, fianlly in June 2010 I demanded surgical relief. He didn't deem it nessarry, but I have insurance. Lo and behold!!! Anal Cancer. So we set up radiation and chemo. The firt week of redio went fine then they put the chemo pack on for 4 days. I have a rare enzyme defiencancy that countered the chemo not only wasn't effective, it caused more problems.I I just got out of the hospital for the 2nd time in 2 weeks. I think I've actually had nine of my 60 radiation treatments. I hope I'm not scaring you, jusst showing some of the other sides ot treatments. do your best...hang in there. Melodie

mp327's picture
mp327
Posts: 3114
Joined: Jan 2010

I just read your post and you mentioned having a total of 60 radiation treatments. I've never heard of anyone having this many--could you provide more information? Most people get at the most 35 treatments (7 weeks). I had 30. The maximum amount of radiation that can be given for anal cancer is 59 gy or less, as per NCCN guidelines. Are they giving yours in lesser amounts each time you get a treatment or ? Just curious.

Your post also brings up my primary bone of contention when it comes to the diagnosis of anal cancer. When are doctors going to get it--rectal bleeding is NOT always hemorrhoids! They can not possibly make that diagnosis unless they scope the patient and take a look. I was misdiagnosed by my internist as having bleeding hemorrhoids. The only thing that saved me was being overdue for my age 50 initial colonoscopy. At the time of my consult with the colorectal doc who was going to do the colonoscopy, she heard my symptoms and did anoscope on me that very day, telling me I had no hemorrhoids, but anal cancer instead. She did a colonoscopy of me two days later with biopsy, confirming her diagnosis.

Misdiagnosis for our disease happens all too frequently! I tell everyone I know that when there's rectal bleeding, do not accept a diagnosis of bleeding hemorroids unless and until they've been examined by a specialist who has done a scope. Just like fingers can make typing errors, they can also be wrong when it comes to hemorrhoids vs. tumors.

Okay, off my soapbox now! :)

pjjenkins's picture
pjjenkins
Posts: 173
Joined: Mar 2009

If you looked over all the kinds of radiation equipment and treatment that is available and can get what you want at different hospitals, I doubt it will make a difference but look over the threads on this discussion board on the kinds of radiation- perhaps especially the equipment being used. Newer models can be better.

Another perspective to look at is the sharing of medical records and professional consultations. Both my chemo and radiation were in the same facility and there is a "tumor board" which convenes - especially on cancers as rare as anal. If you go to two different facilities, be sure you know how well they communicate and coordinate. Especially with mets (metastatic) I agree delay is not desirable but a top notch radiation doc may be worth it.

I am glad to hear your mom did the chemo alright. Keep us posted. My thoughts and prayers are with you!

Priscilla

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