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newly diagnosed and don't want to tell what kind of cancer

StruTanToot
Posts: 102
Joined: Aug 2012

I am a gay male and was just diagnosed with anal cancer. I'm scared and worried just like anyone who has been told he/she has cancer.

I know I should not be ashamed to say I have anal cancer. For the most part, I don't mind saying it. The problem is telling my family members the type of cancer I have.

I come from a small town. My folks go to church every time the doors open. They are religious fundamentalists and members of the Tea Party. I simply prefer not to tell them that I have anal cancer.

The problem is that my brother is married to a nurse. She is quite nosy and has started asking a lot of questions. I told the family I had "intestinal cancer." As a nurse, she knew that was a broad and general description.

It appears treatment will include radiation and chemo. While I've researched anal cancer, I've been spending too much time trying to find another type of cancer with similar treatment options.

Can anyone please suggest what I can tell my family members? I understand the importance of bringing awareness to anal cancer and I apologize to all of you for not yet being able to tell my family the truth. In the scheme of things, it doesn't matter. I know all these things, but I'm not ready to tell them.

Thank you for your support and understanding. I'm thankful for this site.

torrance
Posts: 118
Joined: Jan 2012

I understand your concerns and the feedback you may and will get back from everyone. You will reach a point where you understand how important it will be to share what type of cancer you have in an effort to educate and prevent anyone else from having to endure what you will be going with.

I remember when I was first diagnosed....It didn't bother me that it was anal, but I always wondered why people asked "what kind?" I wonder, does it really matter what kind it is? The point is you have cancer, period. Yes, you will have chemo and radiation, and the side effects can suck big time, however, it is treatable and survivable (at times you might not think so). You did NOT ask to get answer and you did nothing to DESERVE cancer. It happened and now you have to take care of it. You were probably at risk before there was any chance of taking any preventative steps, things are so rare and new with type of cancer, they are learning new things all the time. People, like me, with none of the risk factors can get it.

If it is any help at all, when people asked me, I started with, "I am special, I got a very rare cancer, it represents only one percent of all cancers diagnosed, I have anal cancer." Pretty soon I hope you will gain the sense of humor that helps us get through this and be referring to yourself with humor.

Come here often for support and stay connected. Please don't give your family no credit for how they will respond, help educate them, about anal cancer, what to expect so that they are better prepared to help you through this.

Prayers,
Joanne

mp327's picture
mp327
Posts: 2670
Joined: Jan 2010

I believe we've already met on another site, but I'm glad you have found this one as well. I understand what you are saying, as I felt the same way when I was diagnosed. I didn't want to tell anyone. However, when I mentioned to my colorectal doctor that I was having difficulty telling people that I had cancer of the anus, she said I shouldn't be embarrassed because everybody has one! However, I do know of the stigma associated with this cancer and everyone's an individual, some of us with more understanding family members than others. I did not tell my mother, who lives about 600 miles from me, that I had cancer until about 2 1/2 months after my treatment ended. It wasn't because of embarrassment, but because she is quite a pessimist when it comes to cancer survival. I felt that I could not handle any negativity. You are not under any obligation to tell anyone, but your hand might be forced if your SIL figures it out. Just be honest. None of us asked for this cancer and it is not a form of punishment because of anything we've done. I know you want and need your family's support and I hope you'll get it when they are told. You might be pleasantly surprised.

As for other treatment options, I know of none that are tried and true, other than chemo/radiation, which has a very high rate of success. It is not an easy road, but relatively short in comparison with treatment for other types of cancer. You will be able to get through it and healing happens pretty quickly.

You can count on the wonderful folks on this site for support. Just tell us what you need from us and we'll do our best to be there for you. I wish you all the very best.

RoseC's picture
RoseC
Posts: 485
Joined: Jun 2011

I can understand your not wanting to tell your family. In another post you said that your family has never accepted the fact that you're gay. With anal cancer the possibility that they will connect the cancer with being gay, something that they've never accepted, may be very possible. The problem is, though, that your sister-in-law may find out what it is and then the cat'll be out of the bag anyway.

I don't know what to tell you to do, but I just wanted to say that although it is important to get the word out about anal cancer, not everyone has to be a spokesperson. There are so many different life-type situations and none of us can totally understand what someone else is going through. If you decide to tell your family, I surely hope they will understand. If you decide not to tell them, it's okay. Just keep that sister-in-law in the dark. I tried to find another cancer that has the same protocol but couldn't. Besides, you'll probably be asking for trouble if you get any more specific. I'm not advocating lying, just not telling ALL the details. Others may not agree with me but that's okay. You gotta live this life you have and different circumstances call for different measures of living that life.

StruTanToot
Posts: 102
Joined: Aug 2012

I'm so grateful for the understanding responses I've received and the advice. You wonderful, caring people are already giving me strength. Some of my tears now are falling because of your support and kindnesses.

A couple of things...

I no longer live in the same small town as my folks. Fortunately, I live in Raleigh, which is the capital of NC. I have appointments at both UNC and Duke Cancer Centers. If anyone has any knowledge about which center might be better, please let me know. It appears that both are excellent and one offers something that the other one doesn't. Also, I think the two work together, so maybe I'll get the best of both.

I go ti UNC today for my CT scan today and then meet with the radiation oncologist. Next week I go to Duke for my first appointment. I had a good day yesterday and did a lot of research, but I'm feeling scared and a little vulnerable today because of the appointments. Again though, the support I'm already receiving here helps a lot.

Thank you all.

kirby77
Posts: 48
Joined: Jul 2012

I am sorry to hear about your recent diagnosis. I too recently joined this forum and recieved alot of support. I too was faced with the shame of having anal cancer and the stigma is associated with gay men who have anal sex.

I just had my CT a week ago, and only today a barium enema. I hope that I can now get on with my treatments. I am anxious to get back my life.

I am glad you have some treatment facility options, I have an HMO and it's one approval on approval. I am grateful to have insurance, I can't imagine navigating without it. The treatment seems pretty straight forward;rather everyone gets the same thing.

I am hoping I can start my radiation and chemotherapy next week. My initial CT showed some stenonis, so I was held up.

Although we are on opposite coast, I am sending you my support. I am ever so thankful to the discussion board and all of it's respondents.

sissy310
Posts: 300
Joined: May 2010

Rose said it quite succinctly so I will just ditto what she said. I will defer to others about the cancer center as I am located in Minnesota. However, I did want to tell you that that everyone on this site is caring and understanding and highly supportive of what you feel and are going through and I say that from being where you are two years ago and coming in here to some wonderful wonderful people. Is there anyone where you live now that will be there to support you through the treatment? It is understandable that you are feeling scared of the unknown at this point. I remember how frightened I was...but everyone on this site encouraged me and stood by me throughout...when I had good days and when I had bad, it didn't matter. So, some in here when you need us to give you a cyber hug or help you get through what you need to get through. Marilyne

Dog Girl
Posts: 100
Joined: Sep 2010

Stu Stan Toot,

I totally agree with what Rose C. says. This is such a personal thing and not everyone has to be the spokesperson for anal cancer from Day one or ever. Personally I was very open about it with friends, family, and even co-workers, but that is just my personality. ( was dx and treated in 2009,) The only people I didn't tell were my parents as they were elderly and I thought it would just be too much, for my mother in particular, to bear. My mother just recently passed away never knowing, and my sister recently shared the fact that I had had anal cancer with my Dad (who is now 86) because he was complaining about me being in the bathroom when he was wanting us to go somewhere. He never said anything to me about it. He probably figures I'm OK now, and he has his own issues with which he needs to deal. HA!

Do you still live in the same small town as your parents and will your treatments be there or elsewhere? I'm asking because you probably need to get your support group lined up as you may need help with driving to appointments (fatigue is likely), etc.. and if you can't count on your family, talk to friends. Also the cancer society can help with various things like transport, temporary house cleaning, etc... Check with the center/office where you will be receiving treatment. The HIPPA laws are suppose to keep medical info
condifential, but I also now how things go in a small town as well.

Would saying you have rectal or colo-rectal cancer make you feel any better? Until I got it I wouldn't have known the difference between rectal and anal cancer, so it may not accomplish your goal. You can always reply with a very nice "Why do you ask?" and also that "You're not comfortable discussing the details; you are just focusing on getting through the treatments." If they ask again what are the treatments you can either say chemo & radiation or repeat that "Your'e not comfotable discussing the details..." You're going to come to the realization however that you have no control over what people are going to think no matter if you refrain from saying anything or tell them something even if it isn't quite "the whole truth". I hope that regardless your family will rally around you because bottom line is you have cancer. The bright side is that while intense, the treatments are fairly short and there is an excellent chance of survival which after all is the most important aspect. Good luck and I'll be praying for you. (I'm one of those religious types that thinks Gay-Smay, we're all God's children. And there are lots of us like this out here too btw.)

mxperry220
Posts: 337
Joined: Mar 2011

I too had anal cancer 3 1/2 years ago. It sounds like you might feel better sharing your cancer situation with your family. This might relieve you from feeling the guilt of being gay with anal cancer. Then let your family deal with the "fallout". You do not need to be going through treatments with this kind of guilt stress. You are going to be under enough stress with the treatments without feeling guilty for being gay and having anal cancer.

For me I had and have no problem telling people related/nonrelated about my anal cancer but that is just me. Each person is different though. Hope this helps a little.

Mike

eihtak
Posts: 784
Joined: Oct 2011

Welcome to our family. I've said it before, but once again, we don't choose our families and that holds true for this one. In my case I am soooo happy to have found this one. I am almost 1.5 years post treatment and remember those first days after diagnoses. My children, mostly in their 20's had a hard time telling some of their friends what I had so until more comfortable and also more educated, just said their mom had "lower colon cancer"...the anus is pretty low, yet was a term that satisfied everyone. Now, they have come around to helping get the word out and educate others and also make the word anus not seem so taboo. Trust that things have a way of working out, and please keep us posted. I will surely have you in my thoughts and prayers to move forward with strength to a quick recovery.

MyHopen413
Posts: 38
Joined: Mar 2012

Please don't apologize for having difficulty telling your family, or whomever, what type of cancer you have. It's OK. Everyone works through this in stages. If your family figures it out and they choose not to be supportive then that will be tough. They may, however, be very supportive. Support is important, so I pray you have other people around you that will support you. I didn't tell hardly anyone exactly what type of cancer I had. I usually would tell people if they would ask that it was found at my first colonoscopy, which gave me the opportunity to encourage everyone to have a colonoscopy if they hadn't done so yet. Usually the people who would ask were just nosy. The people who really cared didn't ask. That was my experience, others probably had other experiences.
You are going to be OK. You'll come through this experience and come out on the other side happier and healthier. That may sound nuts right now, but I find it to be true. Saying a special prayer for you.
Diane

StruTanToot
Posts: 102
Joined: Aug 2012

To each and every one of you...thank you for your support and suggestions. I simply decided to tell my family that I have colorectal cancer and that's as much as I want to go into it.

I told my brother with the nurse for his wife that I'm a private person and have told him as much as I'm comfortable telling him at this point. He responded very well.

Finally...I received good news from my CT scan and the radiation oncologist. I'm stage one, so I know I'm very blessed.

Thanks again to all of you. I do feel like I have another family on this site.

sephie's picture
sephie
Posts: 502
Joined: Apr 2009

you are so blessed that it is stage one. yea for you. you will beat this thing. go for it. sephie

StruTanToot
Posts: 102
Joined: Aug 2012

Thank you Sephie. I know I'm very blessed and, at some point, I hope I will be able to give the same type of support everyone on this site is giving me.

mp327's picture
mp327
Posts: 2670
Joined: Jan 2010

I'm so glad to hear that your CT scan shows stage I--that is such encouraging news! You will beat this!

StruTanToot
Posts: 102
Joined: Aug 2012

Thank you...your encouragement means the world to me.

torrance
Posts: 118
Joined: Jan 2012

Hopefully this stage one diagnosis will relieve some of your stress, and therefore be in better emotional shape to face your upcoming battle. Get your support system lined up, you will need them. I pray you find comfort in your treatment team and can get started right away. Thanks for keeping us posted.

Joanne

StruTanToot
Posts: 102
Joined: Aug 2012

Thank you Joanne.

I received my second opinion today and the doc said he is not ready to stage it. He wants me to have a PET Scan first.

I've been to UNC and Duke. UNC did not mention a PET Scan, so that tells me Duke is being more thorough. Therefore, I have decided to seek treatment at Duke.

The other thing is that UNC wanted to use 3D radiation. Duke will most likely use IMRT. Now I'm worried about which one is best since both UNC and Duke are excellent cancer centers but have different opinions.

I'm scared all over again. Hard day.

mp327's picture
mp327
Posts: 2670
Joined: Jan 2010

I think you are making the right decision by having your treatment at Duke so you can receive IMRT. IMRT can be more targeted to the tumor and lessen the damage to surrounding tissue. Also, a staging PET scan is a very good idea. If I were in your situation, I would be choosing Duke hands down. I wish you all the best!

torrance
Posts: 118
Joined: Jan 2012

I support your decesion to go with Duke. Everything I have read, learned and discussed with my rad onc says IMRT is the way to go. Also the pet scan can detect if there is any cancer in lymph nodes. Try not to be scared, it won't help you cope. Do what you are doing, seek support and guidance from those that you trust.

Joanne

StruTanToot
Posts: 102
Joined: Aug 2012

Thank you all again for the encouragement and for providing some info on IMRT.

I've seen that anal cancer has also been treated successfully with proton therapy. I've gotten some info on proton therapy, but the closest place around me that uses it is in VA. I talked to a couple of doctors...it's supposedly less damaging that IMRT or 3D, but if there is a recurrence, the only option is still a colostomy.

So IMRT it is. I am going to Duke and had my PET scan yesterday. Treatment starts Monday and begins at 11:00 with getting a picc line.

I'm grateful for this site and for all of you.

shirlann54
Posts: 161
Joined: Aug 2011

So glad your going to Duke .For one thing the PET scan .You need'nt that test.I had the pic line too.As soon as you get done with your treatments they will take it out.I know i was glad i had the pic line for that reason.I will be glad when this is over for you.And you will get better faster then you think.When you need to talk we will be here for you...SHIRLEY

so_confused
Posts: 1
Joined: Sep 2012

Stru,
I am new here and was recently dx. I am a 45yr old single female, who is normally pretty open, but this was just a little too personal for me to blurt out at work and other places.
My parents and daughter know that it is anal cancer, but there are some things my co-workers do NOT need to know. I have told everyone that it is a rare form of colon cancer,so that they get the general idea of where the treatment would effect, without having to explain it, justify it (why i feel the need I'm not sure) or here one more time... "isn't that what Farah Faucet just died from" I am stage 3 and the LAST thing I want to think about is someone dying! jeez some people are just insensitive! lol Just thought I would make my 1st post here to you since I understand the desire to be private. Thanks for listening..

mp327's picture
mp327
Posts: 2670
Joined: Jan 2010

I'm sorry your diagnosis has brought you here, but it's good that you have found this site--there's great support here. I think all of us would admit to struggling with this diagnosis and telling people. It's difficult. Each person has the right to handle it as they wish and what is comfortable for them. I hope you'll let us support you throughout your journey. Please update us when you can.

StruTanToot
Posts: 102
Joined: Aug 2012

Dear so_confused...thank you for your post. As you can see, the people on this site are so very supportive and fully understand the need to handle our diagnoses and what to tell people in our own ways.

For me, it's been a journey of baby steps. At first, I thought more about what I would tell people than what I needed to do to fight this thing. People on this site helped me to realize it's more important to take care of myself than to worry about what other people think.

I have always been a very private person. That is probably because I'm gay and grew up in a very small and conservative town. I learned to hide my true self very early in life, and those habits are hard to break. Then came HIV and now anal cancer. Very few people know about the HIV and I only told one family member, and I regret telling him.

You have to do what is right for you. The most important thing right now is you. People love to ask a lot of questions. I think some are being nosy and some just don't know better. I think it's probably natural to ask a person what kind of cancer, but since I have it now, I don't want people asking me.

As you are probably hearing, people ask what kind of cancer or where, how was it found, what symptoms you had, and so on. As I write this, I'm realizing people probably ask questions out of fear; that is, if you can get cancer, then they can get cancer.

People can also seem insensitive, but I hope that's not out of maliciousness. For example, my neighbor came over last night and gave me something that is used in CA to treat nausea. She started telling me about a trip she is taking and ended up mentioning an old friend who had died of bone cancer. I could tell she did not mean to go there, but didn't know how to stop once she started. I guess people think of other people they have known with cancer when they hear we have cancer.

I'm sorry...I seem to have gone through a process here of trying to understand why people ask questions. All I really know to tell you is to think of yourself right now and getting well.

One strategy I've used that has stopped all the questions is that I'll tell one person about how I told another person and how that other person bombarded me with questions and how uncomfortable it made me. I'll ask, "what does it matter what kind of cancer; it's cancer." Then that person does not ask questions and usually tells me just to tell him or her as much as I want.

Go easy on yourself. Tell people what you want to tell them and tell them you just don't feel like answering a lot of questions, that you've got so much on your mind and so much to do...and that is true. You and your family are the top priorities.

You are in my prayers.-

Jennifa
Posts: 3
Joined: Aug 2012

Hi there
I dont think you have to worry, anyone can get anal cancer.
Im not sure what else to say, maybe you think they will think that
but anal cancer is on the rise. I am straight and I have it.
Worring what people think on how I got this is the least
of my concerns. Hit me up if youd like to talk~

Marynb
Posts: 1134
Joined: Aug 2012

Hi. I have struggled with the same issue, but I am not gay, have never had anal sex, and have not had multiple partners. I was, however, married to the same man for 20 years and he was unfaithful for much of the marriage. When I first got the diagnosis, I told people it was a gastrointestinal cancer and that seemed enough. After treatment, I was diagnosed with another rare, unrelated, cancer,so now I just tell people about that cancer.

I think there is a misunderstanding about the causes of anal cancer. Clearly, it is not a gay man's disease. We are lucky that it is highly treatable. I wish there was another name for this cancer,really. I think there needs to be a public awareness campaign to inform the public about the symptoms. It took many years for the doctors to diagnose me. They kept telling me I had hemmoroids.

Marynb
Posts: 1134
Joined: Aug 2012

Hi. I have struggled with the same issue, but I am not gay, have never had anal sex, and have not had multiple partners. I was, however, married to the same man for 20 years and he was unfaithful for much of the marriage. When I first got the diagnosis, I told people it was a gastrointestinal cancer and that seemed enough. After treatment, I was diagnosed with another rare, unrelated, cancer,so now I just tell people about that cancer.

I think there is a misunderstanding about the causes of anal cancer. Clearly, it is not a gay man's disease. We are lucky that it is highly treatable. I wish there was another name for this cancer,really. I think there needs to be a public awareness campaign to inform the public about the symptoms. It took many years for the doctors to diagnose me. They kept telling me I had hemmoroids.

MARIE777
Posts: 4
Joined: Jul 2012

Stru Tan Toot,
I feel the same about telling people I have anal cancer. I always say I have colon/rectal cancer and only discuss the truth with family and very close friends. It is hard to say 'anal' and wonder what people think. I am post 1 year from treatment, and doing well, except I had to do 6 more weeks this last month because cancer cells showed in a lymph node. Anal canal is clear!! My scan last week was clear. I am blessed. Stay strong...you can do it! God bless...Marie

mp327's picture
mp327
Posts: 2670
Joined: Jan 2010

I'm so glad to hear that your scan was clear! Congratulations!

Ninjacat
Posts: 5
Joined: Sep 2012

I original hated the "anal" part too and them got over it.
Originally, I was mortified to have my hemorrhoids fixed for the same reason, didn't want the whole worlds knowing about my parts!

Instead, I found as much humor in it as I could and decided at the very least, I could get over myself and help educated people about it

danker
Posts: 681
Joined: Apr 2012

Just say rectal cancer. My tumor was at the north end of my rectum. The docs refer to it al colo=rectal. It is no indication of your lifestyle=affects females equally as men. Good luck. With such personal question, ask if they are writing a book==then leave that chaper out!!!LOL

7243
Posts: 211
Joined: Feb 2011

I just want to send you well wishes. I hope all is well with you and that you are perhaps post treatment? I understand your expressed fear about telling family and friends, in time you will come to a comfort with this. I want you to know that I'm almost two years post diagnosis and elected not to discuss the details of the cancer with friends and family, except with my husband. I'm sure some of my friends in medicine assume the situation ... however, I never discussed the details. I had so much shame ... overwhelming shame that actually impacted my ability to make good treatment decisions. I had never been diagnosed with HPV and that is the cause of the tumor I had. So I was shocked and I was ashamed. So sad that was the case, however there are many woman and men who deal with HPV ... 80% of all sexually active human beings have HPV. And so I run on ... you're not alone is what I want to say. Hang in there. I hope you provide an update ... and I might see one as I move along the topic list (given I've not been on the site in some time). Take care and love yourself! Its a tough journey ... Did you go with Duke for treatment?

StruTanToot
Posts: 102
Joined: Aug 2012

Yes...I went to Duke for treatment. The radiation folks were great, but I can't say that about the chemo side. Very disappointed.

I've basically tried to quit worrying about what people know or think. I'll tell them what I want, and if they want to continue to ask questions, I ignore them.

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