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Lorikat's picture
Lorikat
Posts: 557
Joined: Jul 2011

The mother of one of my son's high school friends ( an RN of many years) asked the old "what kind of cancer" and responded "well...good luck with that!!!). Doesn't give an already scared woman any sunshine feelings..... I know my tumor is the size of a walnut, invasive, etc. Two weeks til my apt at MDA. I may be crazy by then! I am so tired I sleep sometimes 4 hours in the afternoon and then sleep at night. I think I will be better when they say either 'yes, you have a chance', or 'no, you do not have a chance'. I just need to know. Me....probably sharing way too much

sephie's picture
sephie
Posts: 520
Joined: Apr 2009

we all have to remember that this is sort of a new cancer to everyone. not mentioned publically until farrah fawcett did her documentary. so that RN has probably not seen anyone with this. and knowing where it is and since we have to use that area, it is a hard one. But MDA has improved on the tx and technique . good luck MDA is where i was and they have learned even more since I left in July 2009. i was stage 2, no nodes, no metastasis. sephie

Angela_K
Posts: 370
Joined: Jan 2011

Lori, some people are so insensitive. It is especially unsettling when stupid comments come out of the mouths of medical professionals who should know better. I am sorry this nurse said what she did, but I bet she actually knows very little about anal cancer.

I think others on this board will agree with me when I tell you that the initial waiting is the absolute worst part of the journey. It is what it is and you WILL get through it. You don't have to wait 2 weeks to know that you have MORE than a chance. My lovely little tumor was the size of a golf ball. There's nothing left.

I wrote a blog during my treatment that might be of interest. www.assdiaries.blogspot.com
It addresses stupid medical people and a host of other sometimes funny, sometimes not sceanarios along the way.

You are in some of the best hands at MDA. And this board is a place that you can come and share ANYthing . . .no such thing as 'too much' for us survivors-with-special-asses!

Bright blessings to you. Keep us posted!

Angela

z's picture
z
Posts: 1251
Joined: May 2009

Hello, I am a Lori also. If the medical professionals would treat us as if we were their parent and with sensitivity we would all be better off. I am glad you didn't say this rn was a friend of yours.

I am 2 years and 1 month post treatment and I was dx at T2NOMO, and my oncologist said mine was invasive also. My understanding is that invasive is that the cancer has moved out of the original site of where the tumor is and has affected good healthy tissue adjacent to it.

I think once you start treatment you will be fine and realize cancer will not live through this treatment. The waiting is the hardest part. I hope the time will speed up for you somehow. Just take very good care of yourself. I wish you well. Lori

mp327's picture
mp327
Posts: 2855
Joined: Jan 2010

I have encountered a handful of insensitive people throughout this journey. Most of them associate this cancer with Farrah Fawcett, whose outcome we are all familiar with. They know nothing of the thousands of survivors who are alive and doing well, like so many people on this board. It really bothers me that this comment was made by a healthcare professional--someone whose job is to be kind, caring and compassionate. One thing I've learned to do is just walk away from insensitive people and their rude comments. We just have to let it go.

This is a very successfully treated cancer--please do not lose sight of that! Please keep us posted during your journey. I wish you all the very best and I know you can do this!

lizdeli's picture
lizdeli
Posts: 521
Joined: Jul 2009

Lori
This cancer can be CURED! Don't forget that. I am two years post treatment, T2N2MO. I will also be at MDA for my check up (8/22 & 8/23). What days will you be there? Let me know and if by chance the days are the same hopefully we can meet in person.

You are going to a hospital that sees more anal cancer patients in a week than most doctors see in a career. You will be in good hands.

Wishing you well,
Liz

Lorikat's picture
Lorikat
Posts: 557
Joined: Jul 2011

will be there beginning 8/22.....would LOVE it if we could meet up...

dasspears
Posts: 233
Joined: Feb 2009

And going strong.....MDA will take great care of you. When I was first diagnosed, my doctor said - I can cure you - it won't be fun and you may have lasting side effects but we can get you well. And here I am!

lizdeli's picture
lizdeli
Posts: 521
Joined: Jul 2009

We will be there the same time. I have blood work at 3:00 and check in for CT scan at 5:00 and CT scan at 7:00 p.m. Based on past experience I will probably not get my CT scan till 9:00 pm. I will send you a private message with my phone number and email. What time is your appointment? Are you seeing Dr. Eng?
Looking forward to meeting you.
Liz

z810840b's picture
z810840b
Posts: 212
Joined: Jan 2010

hi..i am 3 yrs NED...this is so curable...i have heard lots of dumb remarks.I tried a new gynocologist once, who said farah fawcett got anal cancer from having anal sex..I never have...I left her practice fast.You will beat this!I know this sounds like an oxy moron...but this is a good cancer to get.The survival rate is quite high....hugs..alyse

z's picture
z
Posts: 1251
Joined: May 2009

That gyno is so stupid, this really made me mad. How many gay men have anal cancer? How ignorant is this gyno, I am glad you left that office. I wish you well. Lori.

Lorikat's picture
Lorikat
Posts: 557
Joined: Jul 2011

The doc who did my colonoscopy told me it was mostly a "gay mans disease". My awesome regular doc sent me to MDA........

Lorikat's picture
Lorikat
Posts: 557
Joined: Jul 2011

Some Docs need to learn a bit more about the things they are talking about! Cute, cute doggie....Maltese or Bishone Frise?
...

sephie's picture
sephie
Posts: 520
Joined: Apr 2009

forgot to tell you that when i was at MDA june 2009, an RN being treated there told me to just give up and have a colostomy!!! she was wrong!!!! i really never even listened to her but was surprised. this tx is doable and this cancer curable. sephie

sissy310
Posts: 300
Joined: May 2010

I still cannot believe how insensitive people in the medical profession can be regarding this disease...drives me nuts. I just want to shake them.

Dog Girl
Posts: 100
Joined: Sep 2010

Lorikat,

I had a golf ball size tumor that was half in/half behind the anal canal and it had a stem growing up behind the anal canal like a lower case "b". (That showed up on the PET scan and not on the CT scan btw.) I was 2 years NED this past May, so as you have heard from many on this site, this is a very curable cancer.

Waiting is very hard. I waited a week for my colonoscopy/biopsy because I went to my doctor on a Friday afternoon (of course!) and he was on vacation the next week. (He gave me the option of going to someone else in his practice, but I declined.) I then had to wait another week for the cancer to be identified as anal cancer. (My doctor kept saying I had an ugly tumor. I asked if there were pretty tumors...) In total it was about 6 weeks from my first doctor's appointment with my gastrointerologist who said he thought it was cancer until I started treatment. You may be a bit depressed and that is causing you to sleep alot now. You may want to talk to your GP about starting a mild anti anxiety treatment. But once you start treatment you will need to listen to your body and rest when you are tired.

You can beat this and while the treatments can be rough they are relatively short. Good luck in your treatments and keep in touch with us. There is a lot of good info here and no question is too whatever to ask.

dasspears
Posts: 233
Joined: Feb 2009

Mine was smaller but it also had a "horn". I guess mine would be ugly too!

alis7910
Posts: 80
Joined: Jun 2010

Hi:
I am an RN 2 years post diagnosis; I hate to read what some so-called "professionals" say that is ignorant and insensitive. If any doctors treat me that way, I take the front door.
Waiting is tough; just know that once you have the information, you will knwo what you have to handle; knowledge is power.,
My thoughts are with you. Please keep us posted.

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

Lori,
All my Doctors told me "it is a very curable cancer". I was late stage III. I finished treatment last August. All my tests show no disease.
Best Wishes,
Norma

sandysp's picture
sandysp
Posts: 748
Joined: May 2011

Once I got to Sloan Kettering, everything changed for me. They have been fabulous. People (especially those in the medical profession who should have known better) said some outrageous things to me and that still happens. I've matured:-)

Memphis Mary 49's picture
Memphis Mary 49
Posts: 52
Joined: Aug 2011

Hi, Lorikat.

I am an RN also - for 20 years now. I would just like to apologize for her. That was stupid of her to say. She opened her mouth and knew nothing of this cancer! My gastroenterologist, oncologist, surgeon, and radiation oncologist ALL said, "This is highly curable, you will be fine." That is what I hang on to. 4 knowledgeable people saying the same thing. No one ever once said "gay man's disease" to me. Most anal cancers are women anyway. Likely HPV (human papilloma virus) that traveled from the vaginal area. That is what most of what I've read has said. I did not have any contributing factors.

I know how scary the waiting game is! Just keep reading everything you can about it and keep talking to us. I am so glad you found this website now. I didn't find it until I completed treatment - 3 weeks ago. Try to stay as busy and distracted as possible until your doctors appointment.

It is a good cancer to have, like they said!

God bless you,
Mary

sandysp's picture
sandysp
Posts: 748
Joined: May 2011

I am so sorry you went through everything without the women on the board. They are amazing and now you are one of them and I guess "us". I am very happy to be part of this group. Much wisdom and courage here! Also great survivor stories.

sandysp's picture
sandysp
Posts: 748
Joined: May 2011

Angela is right (if you stick close to the board you will find this to be true about her about 100% of the time)

Anyway,WAITING IS REALLY HARD. I just finished my last radiation treatment and nothing of the treatment including chemo and radiation, is as hard as waiting for the date the first treatment would begin once I was in the right hands. Getting in the right hands was a bit of a "dance" also since Sloan wanted to have everything in hand before talking to me about an appointment. Looking back, it was the exactly right thing to do. Now, even though I have to rest to get well for a while I am happy to be where I am in this journey. Stick close. Like with me from your post, something you need to hear will pop up when you least expect it. God bless you. Please stay close. Your presence will help someone else. You helped me today.

janke
Posts: 29
Joined: Aug 2011

I agree people can be and are so insensitive. My own sister made a very rude comment to me that was devastating. I work with medical people (can't say professionals at this point) I am still haunted by the rude comments I have heard about anal cancer. I truely expected more from them but I guess they are human and ignorant.....Sorry I have to vent. I was told this is a rare cancer. Then I researched, I didn't like the stigma attached to the diagnosis. And I personally don't find it to be accurate. I really wish someone would be interested enough to research the cause. Everyone I have dealt with is really only interested in the cure. That is the ultimate goal I agree but perhaps this is a preventable cancer that has a common link to so many people. I am sure PAP smears were once regarded as experimental.
I fought the battle myself silently for the most part after one to many ignorant comments. I would not recommend that, I held a lot in. I wish I would have used this web site earlier. It is a very REAL source of information. From people like me to people like me.
I am a very private person but I will gladly share any of my experiences honestly and openly with anyone who has a question or comment.

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