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BBdogs's picture
BBdogs
Posts: 36
Joined: Jan 2013

Never thought I would do anything like this; last Thursday (on the 1 yr anniversary of my mother's death) I was diagnosed with anal cancer. 

Too embarrassed to have a "hemorroid" (or so I thought) addressed, I waited for a couple of years.  Darn it!

Biopsy results will be back Monday, but the surgeon said she has no doubt that it is a malignancy.  5 weeks of Chemoradiation.

"Do you have any questions" she asked.  Well about 4,000 of them but not able to spit a single one out at this moment.  Just wanted to make the statement, no it's a hemorroid.

My most recent experiences with cancer were 2009 taking care of my dad diagnosed with pancreatic cancer....64 days from diagnoses to death.  2011 taking care of my mom diagnosed with gall bladder (mets) cancer 47 days from diagnosis to death.  I am finding it hard to be positive.

I have not told my son's, significant other, or sister because I don't yet know the answers to the questions they are going to ask. 

Just feel a little scared right now.

Sorry the first post is a dump!

   

 

OMG 1012
Posts: 61
Joined: Dec 2012

so sorry you had to join this group, I did 3 months ago.  I went in for routine surgery "hemmy" surgery the  beginning of Oct and  6 days later got the news that I had cancer.  VERY hard for me to fathom since I am active healthy person with no prior illness or any problems whatsoever--before all this the only meds I took was an occassional aspirin or whatever for a hangover!

Well that was 3 months ago, I completed Treatment 2 weeks ago--I am doing GREAT and want to let ya know that if I can do it, so can you!  

like you, I  told NO ONE when I was diagnosed!  I felt that I had no answers therefore why make everyone worry---I finally told my husband 1 week after I found out because i wanted him to go with me to the specialist and it was a HUGE relief to finally let him know--he has been by my side and my biggest cheerleader since this whole nightmare started---I look back now and think HOLY COW, I sure was lucky to get a cancer that is so treatable and so cureable----Please do not be afraid to ask any questions here, everyone is so nice and helpful, that is how I have made it this far!

BBdogs's picture
BBdogs
Posts: 36
Joined: Jan 2013

Not real sure how to post here yet (suppose I should read the guidelines and I will). 

I appreciate your responses, Monday can't get here fast enough.  I think the "unknown" is what is the hardest right now.  My usual attitude is "onward and upward" and hope that after I know the extent and the plan this will be easier as it is what it is.

My parent's died absolutely brutal deaths; my oldest son had a grade IV brain tumor at age 3 and is a medical miracle as he is still alive at 32.  He went through multiple surgeries and radiation and the thing that bothered him most was having to get IVs, ("NO VIs MOMMY!") was a brave little man. 

He is probably my biggest fear the last couple days as he is quite delayed and I have (probably unreasonable) concern about what would happen to him if I wasn't around.     

Ok enough, I need Monday to come!

Thanks again you guys

RoseC's picture
RoseC
Posts: 501
Joined: Jun 2011

Life sure does have a way of hitting us in the face sometimes. I'm so sorry about your diagnosis, and about your mother and father. My husband lost both his parents to cancer too, and it was very rough.

 

About the waiting - don't be feeling too bad about it. A lot of us were misdiagnosed for a year or more even after we got up the courage to go to the doctor.

 

Although it's an embarrassing place to have it, anal cancer is very curable. The treatment can be difficult but it's short compared to others. Please keep in touch and feel free to ask any question in the world.

eihtak
Posts: 818
Joined: Oct 2011

Hi, just wanted to welcome you to our family. It is such a comfort to have this group of people who have shared the same experiences and really truely understand. I put off going to the doctor for well over a year before being diagnosed 2yrs ago with Stage3b anal cancer. The treatment was rough but short lived. I have some "war wounds" but have been NED (no evidence of disease) since treatment ended. You will find here a wealth of knowledge, care, genuine concern, and support, 24/7 with no appointment needed and no question too small, too big, or too embarrasing.

I will keep you in my thoughts and prayers 

BBdogs's picture
BBdogs
Posts: 36
Joined: Jan 2013

thanks eihtak,  I am glad you (all of you who have replied) are doing well.  The surgeon did say "this is highly treatable".  Just being a nervous Nellie.  Feeling stupid for waiting so long and really not wanting my butt on display:)

mp327's picture
mp327
Posts: 2848
Joined: Jan 2010

No need to apologize for coming here to vent.  We all understand the shock of getting this diagnosis.  Considering the history of cancer in your family, no wonder you are scared.  However, anal cancer has a very high rate of successful treatment, so please do not let yourself go to gloom and doom.  I hope you will get the results of your biopsy on Monday so the waiting is not prolonged.  The sooner you know what you are dealing with, the better.   Like you, my mind went totally blank when my surgeon said she was 99% sure I had anal cancer.  We are here for you, so please lean on us anytime you need to.  We can and will help you get through this.  Keep us posted, please.

AZANNIE
Posts: 372
Joined: Mar 2011

No need to apologize. You've come to the right place to vent. I, too waited over a year before seeing a doctor... I'm 19 months post treatment and all tests have been clear. During treatment I didn't think I would feel good again, but so far I'm doing fine.
Please don't hesitate to ask us any questions. We've been there, done that... and it's understandable to be scared.

Ann

 

Marynb
Posts: 1134
Joined: Aug 2012

I am sorry that you find yourself here. I was seen by doctors for more than 3 years before I switched doctors and was finally diagnosed. Try not to worry. This cancer is very treatable and curable. Once you tell your loved ones, they will be there for you. Once you know what you are dealing with, you will need to do some rresearch to get to the best place for treatment. For now, you are in my prayers.

jenijensong's picture
jenijensong
Posts: 2
Joined: Feb 2013

I've survived Basaloid Carcinoma just above the dentate line ( a good sized aggressive mass ) for 10 years now but it hasn't been easy.  I agreed to get the stoma which I REGRET.  I vomit, suffer hearing loss and high pitched tones, get dizzy, get stomach cramps, have a hernia they can't do anything about and so on and on.  

Yes it's very curable, but I wouldn't get a stoma on my tummy area if I ever had the chance to relive this nightmare.

The bags leak, the glue unbinds and wafers peel away from your skin, the odor is terrible!!!, I have to take the bags out to the trash daily even in the winter -- my bathroom stinks---my neighbors complain -- I stink sometimes and it's just SICK.  I hate it.  My sister won't even allow me in her car because she can just smell it on me no matter how fresh I am.  My jeans/slacks bulge up when the bag fills with air and I have to empty it no matter where I'm at even if it's at college or out to dinner at a restaurant in a public facility.  

I have to wear stretchy clothes around my mid section in case the bag fills up.  If I get sick, I better have extra supplies on me because the dang thing fills up in 4 minutes and I have to remove it and replace it NO MATTER WHERE I'M AT when I have diarrhea which happens once or twice a month regularly and usually at the worst time.   

Yes you can train it to a point but don't get caught up in too much of the b.s. it has a mind of it's own.  

I just want you to know the truth of it.  Yes I'm alive but the quality of my life well that's quite subjective now isn't it.  

 

 

 

Phoebesnow
Posts: 447
Joined: Apr 2011

Hi jeni,

 

My husband has a colostomy here's a few tips for the smell. A plant based diet will help reduce the smell.  Meat stinks the most.  You can put a mint into the bag.  Also your supplier should sell something to eliminate the smell.  All of these methods really work.  Maybe yourbag does not fit your lifestyle, talk to a stoma nurse.  I Hear of people who do training or irrigation and then they can just cap it off.  No bag.  There are options out there.  I know it is hard to deal with.  Be kind to yourself.

LaCh
Posts: 509
Joined: Dec 2012

Senijensong--

Speaking only for myself, I for one, deeply appreciate your candor and honest depiction of your experience.  I find it extremely helpful to know these things when weighing my options and making decisions for myself and I thank you sincerely for your post.

mp327's picture
mp327
Posts: 2848
Joined: Jan 2010

I truly appreciate your honesty and sharing of your experiences with living with a colostomy.  Since I've been through cancer, I don't have most of the fears I used to have, including that of dying.  However, to be totally frank here, my biggest fear now is having to someday have APR with colostomy.  I always try to support people who have to go that route and be as positive as I can, but I have no experience with one, so who am I to say that life can be "normal" with one?  I know, as stated in another post, there are things that can make living with one easier.  However, it's evident that some people do much better with one than others.  I'm sure there are plenty of horror stories, as well as positive ones.  My second biggest fear is dying before my 88-year old mother who has dementia and needs me to be around for her.  I don't fear death, just dying before her.  Therefore, if faced with having to have this surgery, I would probably have to consent to it for that reason and that reason alone.  Otherwise, I would have to pass.  Of course, I say this with not having had to make that decision.

 

I hope you can find ways to improve the quality of your life.  I'm sure you've spent time with a stoma nurse and gotten lots of information.  There are support groups, which I'm sure you know of, both in communities and online.  On this site, you may want to check out the colon cancer board for some feedback.  I wish you all the best and hope you find ways to overcome the challenges you now deal with.

Lorikat's picture
Lorikat
Posts: 555
Joined: Jul 2011

Good post Martha -  like you it scares me and like you I am not sure what I would do.  My Mom, who passed in Oct 12, also had dementia and I cared for her till she died.  NOW it would really be a decision.  I have talked to people who have a stoma and I never knew it.  I suppose they have learned to handle everything?  

HOWEVER, I just knew there were others who felt differently.  And 30 years old?  So not fair.....

 

eihtak
Posts: 818
Joined: Oct 2011

I am so sorry for your regrets, that is difficult to live with. I have had my colostomy for two years now. In the beginning I had some complications due to radiation and was hospitalized/nursing home for a couple months. I too had leaks, odor problems, poor fitting appliance, and some clothing issues to name a few.

But.....when I began to recover from treatment I joined a couple of on line support groups and was fortunate enough to find an ostomy group in my area with a fantastic ostomy nurse. Through these I learned of the various suppliers and went through numerous free samples till a found a system that worked for my skin/body type. A hurnia presents a whole new set of fit issues though! I have  met a few people dealing with that same problem. Some were able to have surgery and some not.

Like many things in life, living with an ostomy and all it entails is not a "one size fits all" kind of thing. I spent a lot of time with trial and error and both emotional and physical adjustments. I have been able to tweak my diet (a very minor adjustment to how I ate before) so that I don't have to wear a bag for about 6hrs a day if I don't want. I really have no odor problems anymore and dispose of ostomy bags in a plastic bag and then garbage so have not had a "in home" problem either. (and I'm kind of a clean freak) I swim, exercise, do yoga, and most of what I did pre-bag! I am fortunate that my stoma was expertly placed so as to allow me to wear most of the clothing styles I would without. I also have had a double mastectomy with no reconstruction so takes some creativity though! Truthfully, most people don't know of either. I would never have made it to this point without the help of the ostomy support groups. This is something that if you don't have you just can not know, that includes the good and the bad aspects. I realize that I am lucky, and many people have negative issues they deal with, with their ostomies. I always appreciate hearing or seeing both sides of the coin, so thank you for your post on this.

I will pray that things improve and we all move forward in health!

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