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leelee2012
Posts: 17
Joined: Jan 2013

Hi! We found out in December after a colonoscopy that he had a tumor the size of a strawberry in the middle of his rectum.  That explains the bleeding in the stools that he's been having.  A biopsy was done and we were told that it was rectal cancer. "NEWS FLASH" what??? Are you kidding me?  We were in shock about the news.  We recently saw a Colorectal Specialist who is supposedly internationally known and best of the best.  Our options was the Total Meserectal Surgery where the whole rectum is removed.  Then the colon is reconstructed into a J loop and then will be reattached to the lower rectum once the rectum is healed.  We are so lost. We are scared to death. My husband can't eat or sleep since the day we found out.  This has been the last couple of rocky weeks in hell.  Please someone help shed some light.  We would like to know how has gone through this type of surgery.  Thank you!

Lovekitties's picture
Lovekitties
Posts: 3022
Joined: Jan 2010

Glad that you found us, as there are many folks here who willingly share their knowledge and also help with emotional support as you begin this journey.

Have there been CT or PET scans done?  Do you know the stage?  Will there be a temp colostomy or iliostomy while waiting for healing?

What you describe is a surgery some here have had so I am sure that there will be others to chime in.  My personal situation is that both the rectum and anus were removed, so I have had a perm colostomy for nearly 3 years now.

The first weeks after diagnosis are some of the hardest.  No one is ever prepared for a cancer diagnosis.  You will find that the more you learn and ask questions the more in control you will feel, and along with that will come some relief from the all comsuming fear.

Hubby needs to eat to keep up his weight and strenght and also get sleep.  Let the doc know of these issues and see what he recommends. 

Hang in there.  Others will be along here to reply. 

Hugs to you both,

Marie who loves kitties

leelee2012
Posts: 17
Joined: Jan 2013

Hi Marie,

Thank you so much for replying back. I have been doing alot of research to find a site where I can find support.  We have so many questions. He has done a CAT scan and that came back ok where the cancer has not spread to any other organs. We did an MRI the other day and got the results back today. I don't know exactly what stage it is. We are going in for another consultation next Wednesday to discuss further on the what our next step will be.  They said the tumor broke through the muscle tissue and has gotten to one lypm nod.  We were praying for better results, but it is was it is.  The procedure that the surgeon recommended involves removing the entire rectum.  The bottom will be left to attached to the colon for the new plumbing system.  His tumor is in the middle of his rectum. He wants to get it done and over with but he is scared to death. He's been watching videos online and it's scared him to death.

 

The surgeon is really knowledgeable in this area.  He is very visual and as he spoke to us about it he was drawing graphs and writing things down for us to understand.  We were often told that we are in good hands and everything will be fine.  That's what I keep telling my husband.

Thank you for your kind support in this journey.

 

Lee

herdizziness's picture
herdizziness
Posts: 3519
Joined: Apr 2010

Dear Lee,

Welcome here, you will find a few that have been through what your husband is going through. 

Sounds like you have a good and caring surgeon which is a great thing to have, so happy for you two there.

The cancer diagnosis is a shock, takes a while to get over that one.  At first it seems like it must be some sort of crazy dream and you'll wake up and it'll all be gone, but it never really goes away, you wake up and it's still cancer.  So, we're here for you and yours. 

While I have not gone through that surgery, there are some here that have and will help you through. 

Tell your husband to quit watching those videos!!!!  LOL, I still don't know how a c-section is done, although I've had three of them, there's no way I'm looking at what that surgery incurs, no thank you, I faint at the sight of blood(I fainted when they pierced my daughter's ears).  I'd find it frightening to see those surgeries too, I rather think of the surgeon's job as the dude that can watch what's going on, and my job as the patient is to get though it while in a peaceful sleep.  But I am also one of the world's biggest wimps when it comes to things like that.

Things will get better as time goes on, it takes awhile to accept, acknowledge and deal with cancer.  It's been three years since I was diagnosed and I'm still ticked off about it. But, you end up finding joy in just waking up every morning, grateful that you get to hold, love and see your loved ones another day...that the sun rose and it's ray's kissed your face and started your day off right.  Every day isn't perfect, but it's another day to live and continue on enjoying life, it's just different after cancer diagnosis.  One just has to look harder for the joys, they're still there.

Sorry I couldn't help with the surgery, but just wanted to welcome you here, you'll find some answers and help here.

Winter Marie

 

leelee2012
Posts: 17
Joined: Jan 2013

Winter Marie, thank you for your kind words. I have yelled at him to stop watching those videos on the operating table. He's been better and is now playing games online to get his mind off of the subject. LOL...  We are finally learning to accept. It is what it is. The word "Cancer" doesn't necessary mean it's all over.  Yes, he was very upset when he found out. Why me? What did I do to deserve this?  By the way my husband is only 37 turning 38 next month on V-day.  We have four healthy kids, 11, 10, 8, and 6.  He was so caught up reading the cancer survivor rates and he was just heart broken. I told him, no that's just statistics.  The surgeon wants to assure him that he will live to be a healthy old man.

Chelsea71
Posts: 1170
Joined: Sep 2012

Hi Lee.

Welcome. My husband has cancer as well. Diagnosed almost two years ago. Stage four. Life has not been the same since diagnosis. If we look at the situation closely, we recognize that there have been some positives that have developed throughout the course of our battle. It's a new life, but still a good one. As horrible as it all seems right now, it will get better. You will learn to cope with onc appointments, scan results etc. It's very hard to watch your spouse or loved one go through it all. My husband thinks it's harder on me than him. I agree.

Something that I have learned. Make sure you have a really good onc. Like any profession, some are better than other. Get the best. Never trust your doctor completely, no matter how much you like him or her. Do not take what they say as gospel. Figure things out for yourself. Question everything and follow your gut. You can't just go along for the drive. You have to be in the drivers seat. Seek the advice of the people here. There is a wealth of experience and knowledge in this group. Take advantage of it.

Good luck in the upcoming weeks and months. You will feel very overwhelmed at times. Stay strong and try to keep up your normal routine as much as possible. Don't think ahead right now. Just focus on one day at a time. Sounds like your husbands cancer might turn out to be quite treatable. A lot of people have great success with ileostomys and then j pouches. I hope he goes on to live a long and happy life. You will get through this!

Chelsea

annalexandria's picture
annalexandria
Posts: 2361
Joined: Oct 2011

although I'm very sorry you and your DH have to join us.  IMO, the first few weeks/month or so after diagnosis are definitely the worst.  Once your DH gets through surgery and starts treatment, you will both feel more positive (I know that sounds hard to believe, but for most of us, being active in the fight against this crap always feels better, at least emtionally).  No other organ involvement and only one lymph node is actually really good news (your view of what constitutes "good news" definitely changes once you have cancer), and should mean a good prognosis.  Hopefully, you will get that news, and the answers to any questions you have, at your next appointment.  Good luck, and keep us posted.  Sending strength to you both~Ann Alexandria

PS  I would suggest getting a notebook, and writing down any questions you have before you go to the doc's.  It can be very difficult to remember everything you want to ask once you're in there!

Edited to add...if your husband isn't sleeping, I would highly recommend having him ask his doctor for an anti-anxiety medication, like Ativan.  It helps with sleep, and can really come in handy during the many stressful phases of the cancer journey, like waiting for scan results.  Stress isn't good for our bodies, and we cancer folk need to use every tool in the box to keep it to a minimum.

leelee2012
Posts: 17
Joined: Jan 2013

Annalexandria, thank you for having me here. I talked to the nurse again today about what state he is in. He is in T2N1, which sounds ok I think?  We are going in next week to meet with the surgeon again on our next step to surgery.  The nurse is really helpful in answering questions that my husband had.  I feel like I'm the translator since his mind is just all over the place right now.  I told my husband to write down all his questions.  Good idea, I'll need to get a notebook for him to do that.  We didn't know what to expect the first time we met with the surgeon. But he was very reassuring and comforting telling us everything will be fine.  Thank you! I will keep you posted.

Trubrit's picture
Trubrit
Posts: 1748
Joined: Jan 2013

I am glad that you have found this wonderful forum. It was a huge relief when I came across it at the beginning of this month. 

Back in November I found out I had a tumour the size of a fist in my rectum. I had a bowel resectoin two weeks later and it was staged at 3A with one lymph node positive. 

To start with, hearing the word cancer can feel like  death knoll. Isn't that what we've always been taught? But medicine has advanced, and that is not the case anymore. Colorectal cancer treatment has come a long way, and that is exactly how you and your husband need to look at this. 

I have found that taking on this huge life changer with a positive attitude, and dealing with one stage at a time, has made things allot easier. Its true, there have been a few hours now and again when the worst senario takes over, and I allow myself a personal pity party, then I tell myslef that I cannot grieve over something that I have not yet lost, and I then move on. 

Your love and support must be a great comfort to your husband. This journey belongs to both of you and others too. All those around who love him are part of his journey.

I hope the shock of the diagnosis passes soon for him, as he needs his strengh. Worrying doesn't take the cancer away, and is a terribly drain, though it is a natural reaction.  

I think my best advice here at this stage would be a positive outlook and take it one step at a time. 

I hope you continue to join us here and let us share in you and your husbands journey. 

 

 

leelee2012
Posts: 17
Joined: Jan 2013

Trubrit, yes this place here is a relief when I found it.  I never thought that there would be a place where people can share their experience/journey.  We felt so alone at first, but we have came to the right place.  Yes, the word cancer...we were also taught as "death". Sounds just terrible.  At your stage, did you have any sort of radiation/chemo therapy?  Is this stuff good for the body to take in.  Im told that this isn't the same like chemo for breast cancer where your hair falls out. 

Annabelle41415's picture
Annabelle41415
Posts: 4448
Joined: Feb 2009

Mine was about the size of a nickel in the rectum and yes, they did the same on me.  They did an ileostomy on me, let the removal of rectum heal and then reconnected me with the j-pouch.  Your husband can have a wonderful return to life with some adjustments.  I've never totally gotten away from the constant bathroom issues but manage just fine by adjusting my lifestyle.  I'm sorry that he has this diagnosis at such a young age and glad that you found this board to help you with questions, and concerns.  It will be a rollercoaster of things for both of you for quite some time.  You've come to the right place and we are all here to help you both.  Ask away with any questions you have to me as I've been there along with others on this board.  Welcome and wishing the best for hubby.

Kim

leelee2012
Posts: 17
Joined: Jan 2013

Annabelle, thank you for having me here.  I've finally found a place to seek the wise ones. Laughing I talked to the nurse today, she said my husband's tumor is about an inch in diameter.  She said that size doesn't matter.  Did you have any pain in your rectum before you had surgery?  Just wondering because my husband has never had any pain. He just had the constant bathroom rush and a little bit of blood in the stool.  Did you have a lot of pain recovering in the hospital?  We found this news before x-mas and boy the holidays were just tears.  It's been better now.  I think he's finally thinking more positive.  That's what I tell him each day.  Be positive.  That's all I can do as his wife. 

Annabelle41415's picture
Annabelle41415
Posts: 4448
Joined: Feb 2009

The blood in stool started but very little and then the pain and it finally got to where sitting was so uncomfortable.  If your husband has no mets and they are going to remove his whole rectum and redirect everything he has a very good chance of recovery.  It might not be the life that he once had but it is a learning curve and actually today I've had some formed stools, plus there might be a chance he has no problems getting back to normal like KathiM here and others.  Geez you will find that talking about poop issues is a normal topic of discussion even with people you know.  Once you have this disease, your whole humility goes out the window.   I've just posted I'm going away from the boards for awhile, but you can PM me anytime and I'll answer you. But I'll still be watching the boards too. The surgery is painful but the main thing is he has to walk, walk, walk after surgery.  It might hurt like the dickens to walk but have him do it.  He should have had a CT scan.  Does he have mets?  I'm here for you anytime if you need it.

Kim

leelee2012
Posts: 17
Joined: Jan 2013

He's always had soft stool during the who 14 years we've been together.  He's practically in good shape and experiences no pain on his bottom and tummy.  I have a really dumb question. What is mets?  LOL...i think i have to learn some more medical terms here.  Yes, he did a CAT scan a few weeks ago and the local surgeon here said that there were no spread so that was the only good news that we have heard since.  He is worried about where they are going to put his pouch for his stool after surgery.  It sounds scary, but is it that bad? Were you on any meds while you recovered from surgery?  I will PM you more questions as well get closer to surgery.  Not sure when the date is but I"m sure we are near. Thanks!

Annabelle41415's picture
Annabelle41415
Posts: 4448
Joined: Feb 2009

Also read my bio.  Just click on my name and it will give you a history of what I've been through.

Kim

leelee2012
Posts: 17
Joined: Jan 2013

will do. I'm still getting used to toggling around this website. hehehehe...

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