Can anyone help me?

[disco nap]

For your reference:
I have lynch syndrome.
My tumour was about 7cm, near the cecum, and i was staged at 3c due to lymph node spread.
I had a right hemicolectomy.

I just passed my 5 year "cured" mark, totally healthy and my quality of life is much the same as before diagnosis.

I know it's tough to wait for answers, and you will have a tough road ahead, but hopefully my story gives you some hope during this time.

[Lee]

The doctors recommend he has a total resection but DH doesn’t want to. His mother had one and he sees how she lives. Every time she eats, she’s in the bathroom 15 min later. He doesn’t want to feel so limited at his age. So he’s leaning towards the partial resection. Can anyone hear give me some feedback about partial vs total resection and how it affected your quality of life?
xxx

Hi Isabel,

Welcome, sorry for the reason you are here. Since your husband has Lynch, he might want to consider a total resection. He might want to consider getting a 2nd (or 3rd) opinion on this issue. If 2 or more Dr agree to the same protocol, he might want to consider their medical advice.

If he is worried about bathroom and quality of life issues (especially at his age), he might want to consider getting a ostomy rather than a reconnect after surgery. This means he would have a bag that his bm would empty into rather than out his rectum. Seeing an ostomy nurse prior to his surgery is always a good idea, they are a wealth of information. Other people on this site do daily enemas with a lot of success. The point is, there are options out there.

Hope this helps. Again welcome, you will find a lot of support and information on this forum. People who have been there and know what you (and him) are going through.

Lee

[Bob Bones]

Hi,

We have over 400 LS patients from across the globe. You can seek answers to your questions there

https://www.facebook.com/groups/lynchsyndromeUK/

[Isabel]

Hi everyone,
I just wanted to give you the latest update.
After my last post in July, DH had a CT scan that confirmed the cancer had not spread to other organs. The lymph nodes were a bit swollen but that could be inflammation according to the doctor. Fast forward to September 3rd when DH finally had surgery. He decided to have a right hemicolectomy. He was released from the hospital today and has a slight fever. Is this normal? I'm worried... And now we wait for the results. The confirmation of the stage his disease is in. I think we will know on the 18th. He has an appointment on that day so...
I'm feeling very down today. And there's practically nobody I can talk to. DH doesn't want anyone to know about his condition. So on my side only my mother knows. None of my friends know. Sometimes I just want to break down and cry in someone's arms. I've been pretty strong so far I think. Especially in front of DH. I think it's important to stay positive for his sake. I keep thinking about what might happen to him. And worse, I'm afraid my baby boy inherited his syndrome. And it kills me to think he would have to go through that when he's older. How cruel is it for your fate to be sealed when you're just an innocent baby?

Sending lots of love and prayers to all of you out there
xxx

[Sams wife]

Wow. That would be tough with no one to talk to. I can't talk about some stuff but everyone knows he has cancer. There is always someone here to talk to.
Does the paperwork you brought home tell you what temp to watch for. I would say 101 but I'm pretty new too. Someone else will be along soon with better advice I'm sure. You will probably be a mess for a week or two but it will get better.

[midlifemom]

Isabel, I believe the temp to watch out for is 100.5. Butt. You may have been told differently. Your hospital discharge paperwork should talk about fevers and should have a number to call for questions, even at night.
Try to focus on the positive - it sounds like all visible cancer was removed, good news.
It's ok to cry. Sometimes it's just relief - like having the surgery done.
You can always come here to talk to someone. C lose your eyes. And feel the virtual hugs. (((Hugs)))

[Lydia666]

Isabel, are u in Canada? Your wait sounds like mine. I still have nightmares over it.

I wish your husband smooth healing.

[Nik Colon]

Isabel, I believe the temp to watch out for is 100.5. Butt. You may have been told differently. Your hospital discharge paperwork should talk about fevers and should have a number to call for questions, even at night.
Try to focus on the positive - it sounds like all visible cancer was removed, good news.
It's ok to cry. Sometimes it's just relief - like having the surgery done.
You can always come here to talk to someone. C lose your eyes. And feel the virtual hugs. (((Hugs)))

Yes, I believe 100.5 also from what I can remember, so if it's above that, call or go in

[Isabel]

Thanks for all the feedback. Thankfully his temperature dropped and he's been fine for the last few days.
Lydia I live in Europe actually.
Thank you all for your kind words midlifemom, ritz75, Lydia666 and Sams wife. You guys are great!

My husband has been recovering slowly but steadily from his surgery. His body is still adjusting to everything.
He has a doctor's appointment this Friday and we don't know if he will know the result on that day. So I'm getting pretty anxious just thinking about it.
I'll keep you posted.

[NZJay]

Hi Isabel. Just wanted to stop in and express my best wishes to you and your husband at this testing time in your lives.

No apparent distal organ spread = FANTASTIC news!!

I know it's still a nightmare... but try to remember this could have been so much worse right now.

Regardless of potential lymph node involvement, he will have a great chance of being cured.
Try to stay strong and focus on the positives. And keep us updated.

Regards.

[CRguy]

Best wishes for the follow up doctor's appt tomorrow, Isabel.

Please know we are here to support you both, so ask any questions or just come here to vent !

In Harmony
CRguy

[Deb m]

Isabel,

My husbands cancer was also in his cecum. He had a rt. hemicolectomy and does fine. He to had some swollen nodes, but they all came up negative for cancer when they did the biopsy. Hopefully that will be the case with your husband. My husband was not positive for lynch, but they did tell me at MD Anderson cancer center that had he showed positive that our two teenage sons would get their first colonoscopy at age 18. Since he's negative they recommend that they get there first scope at age 40 which is ten years younger than my husband was at diagnosis. Also I've been told that lynch positive cancers are more aggressive, but have better success with treatments and better prognosis. I think I got that right? Maybe somebody can better explain that if it's true. It is very good that your scan was clean otherwise. Try and stay positive. Know that I will be praying and wishing you the best.

deb m

[Isabel]

So the results are back. It's T2N1bM0. 2 out of 47 nodes are affected. That puts him in stage 3 but he doesn't know that. And I'm not going to tell him.
I was hoping there would be no nodes involved. Unfortunately that's not the case. He will have to undergo "light" chemotherapy. The doctor said it's just a preventative measure. Supposedly his hair won't fall out.
I was pretty devastated but am coming to terms with it now. Now he has to wait to be called by the oncologist to start with the treatment.

[Sams wife]

My hubby's hair isn't falling out with 5FU. Not sure if that's what they mean by light chemo.

[Lydia666]

So the results are back. It's T2N1bM0. 2 out of 47 nodes are affected. That puts him in stage 3 but he doesn't know that. And I'm not going to tell him.
I was hoping there would be no nodes involved. Unfortunately that's not the case. He will have to undergo "light" chemotherapy. The doctor said it was just a preventative measure. Supposedly his hair won't fall out.
I was pretty devastated but am coming to terms with it now. Now he has to wait to be called by the oncologist to start with the treatment.

I know someone who had 2 lymphnodes caught and she is fine 7 years later. Just wanted to share that, even though there are many successful stories on here too. Her i know her personally.