The Colon Club

sealdog wrote:Thanks everyone for your calming replies in the early days. I know I haven't posted any updates but I haven't felt myself at all, it's a strange limbo where some days I don't even feel like I exist, not to be too dramatic ha! Four months in and I've realised you just have to ride the rollercoaster, I'm impatient at the best of times so this is the ultimate test.

I'm approaching surgery in a couple of weeks, an ULAR using the Da Vinci Robot at Peter Mac in Melbourne after I got a second opinion with another surgeon. Needless to say I'm terrified of the surgery and the potential life long side effects, but more terrified of the cancer inside me. My tumor was located at between 7-8 cm, so while I've read an ULAR is total removal of the rectum, they're saying they will still leave me with a stump of rectum.

The tumor itself has shrunk to the size of a small ulcer supposedly, a near complete response so that's good news I guess. Still no avoiding surgery in my Doctors eyes though, but at least the odds are better for the treatment plan to work entirely.

Mum got her genetic results back and it's been confirmed she has lynch syndrome via the EPCAM gene, which correlates with MSH2. Once they confirm my genetic results after surgery then they are proposing a possible mix of immunotherapy + chemotherapy post surgery but more on that to come, one researcher even hinting at a possible vaccination coming out next year for this strain I guess, they were pretty flippant about it but just had to tell me. Where was it last year mate!?

My surgery is scheduled for October 30 so I'm walking a similar path though you are considerably younger than I am.

I discussed the vaccination with my oncologist but he didn't think that I would be a likely candidate (maybe they save the slots for Stage 4 patients). I think that the vaccination may be one of those that are designed individually for each person but I'm not completely sure on that. That would make it very expensive to produce. I'm in the mode of getting my house in order leading up to the surgery.

I'm so sorry you are dealing with this at such a young age. I had rectal cancer about 5 cm from anal verge. I did chemo/radiation for 5 weeks and had
complete response. Only scar tissue remained. Surgeon suggested I may not need chemo after surgery depending on pathology report. Path report showed
minimal residual cancer, 0/24 lymph nodes and clear margins. Oncologist did recommend chemo as she couldn't guarantee some cells did not get into
blood stream and don't want to say "what if", if there were a recurrence even though chances were low. I had a temp ileostomy. I was not suppose to have reversal
until after chemo, but did get a bowel blockage due to scar tissue 4 weeks after surgery. The surgeon reversed the ileostomy when he had to go in an remove
the scar tissue. I was happy for the reversal but it did make it more difficult during chemo as I had diarrhea which is common with chemo.

After finishing chemo, my bowel movements were pretty good but frequent small movements were the norm. I did go to a bowel control clinic about
a year after and it was quite helpful. Many people do fine after surgery for rectal cancer with bowel movements, others deal with frequency. There are
options to control the frequency if you work with your gastro or can find a bowel control clinic like I did. I have found what works for me, and lead a pretty
normal life. Right now you need to deal with becoming cancer free. I know so much is thrown at you and it is so scary. But there are so many on this forum
that have been through what you are dealing with right now and living normal healthy lives. Good Luck. Try and stay as positive as you can.

I am so sorry you find yourself here. I agree with everybody about waiting for the official Lynch diagnosis. Both my mother and her father had colorectal cancer but it is not lynch. You have gotten a lot of great advice here. I didn't read everybody but wanted to touch base on your one concern about fertility. If this is something you are very worried about and understandably so being so young, but don't want to risk not getting treatment for your cancer you might want to seek the guidance of a reproductive endocrinologist. They will not only be experienced in helping couples, even those affected by radiation and cancer treatment but they would be able to help freeze sperm if there is great risk to long term fertility after radiation to your pelvic region.

Good luck and hope to see you here as somebody with NED soon.

ETA: I just went back to reread and saw your update. Good luck with your surgery!!

Just found out that my surgery has been booked in for Dec 18th and I don't know whether that's a good thing or a bad thing! That's 20 weeks after chemoradiation treatment ended which i thought was way too long, dangerously so from the studies i have read for stage 3.

Peter Mac is the major cancer center in Australia too with the head of surgery doing my operation robotically. Is this normal to have such a delay? I can't tell if I should be terrified or it means I've become less of a concern. Be nice to know it all wouldn't it. Either way going to be a lousy christmas, what a drag

Could the surgeon not get you in sooner? My surgery was 8-9 weeks after I finished chemo/radiation. I had a pretty good response, as the surgeon said all that was left was scar tissue, and a pet scan did not show any cancer in the distal rectal area. I know there have been studies that show waiting longer is helpful as the radiation continues to work for quite some time after completion. I'm not sure if 20 weeks is too long or not. Maybe someone else on this forum will know better. I would like to believe that the doctor would not wait that long if it were detrimental to a successful resection and your response to treatment.

sealdog wrote:Just found out that my surgery has been booked in for Dec 18th and I don't know whether that's a good thing or a bad thing! That's 20 weeks after chemoradiation treatment ended which i thought was way too long, dangerously so from the studies i have read for stage 3.

Peter Mac is the major cancer center in Australia too with the head of surgery doing my operation robotically. Is this normal to have such a delay? I can't tell if I should be terrified or it means I've become less of a concern. Be nice to know it all wouldn't it. Either way going to be a lousy christmas, what a drag

I think that the radiation continues working up to 8 weeks after it ends though I've heard that it's longer from some sources. 20 weeks seems way too long. I've seen some people get surgery the same or next day when it's colon cancer. It may be an issue of supply and demand for services. Can you get on a waiting list in case there's a cancellation? My surgeon gave me a choice of 5 weeks or 7 weeks as she had a conference in the middle.

I think it could possibly just be a Peter Mac process and because I'm in such a heady state of mind I forget things.

The Surgeon told me at Peter Mac they re-stage you after ChemoRadiation treatment where most hospitals just go straight to surgery. My initial surgery was booked in for September with my first Surgeon, but after getting a second opinion I went with the Surgeon at Peter Mac who was very keen on my case (extensive family history, young onset etc) as Peter Mac are more research focused. He is also a Surgical Oncologist.

I had my re-staging (PET, CT, MRI, Re-Bioposy and Flexible Sigmoidoscopy) done 6 weeks after ChemoRadiation Treatment so they were very prompt with that. I guess as a result of the information they have gathered they have placed me on a semi-urgent waiting list, semi-urgent being 30-90 days. I think there might be a different culture with Doctors in Australia, they seem to be very "need to know" while on this forum everyone seems to have loads of information on their particular case. Maybe I got to grow up and be a squeaky wheel!

If I have nothing but good faith in them then I can only see this as good news, but when it's your life I want something a little more concrete in front of me than just good faith. 5 months in and at times I just feel like collapsing in a heap before the surgery is even done. I guess I was never good at marathons

I did chemo/radiation for 5 weeks and had complete response. Only scar tissue remained. Surgeon suggested I may not need chemo after surgery depending on pathology report. Path report showed minimal residual cancer, 0/24 lymph nodes and clear margins. Oncologist did recommend chemo as she couldn't guarantee some cells did not get into blood stream and don't want to say "what if", if there were a recurrence even though chances were low. I had a temp ileostomy. I was not suppose to have reversal until after chemo, but did get a bowel blockage due to scar tissue 4 weeks after surgery. The surgeon reversed the ileostomy when he had to go in an remove the scar tissue. I was happy for the reversal but it did make it more difficult during chemo

My mom just did the same thing as you did and had a complication 2 weeks after surgery at home. They weren't clear on what it was. One dr. said abscess, one dr. said dehydration, one dr. said bowel obstruction, another nurse mentioned abscess and hernia. My mom was in a lot of pain after surgery and it was because of her blockage or whatever you want to call it. She also didn't do well on the OXY pain drug, no appetitive and she became dehydrated, very scary to see her that way. Her output was dry. I am glad she went to the E.R. and they put her on anti-biotics and it cleared. That whole post surgery was a scary deal, but he got through it, but it was tough. Her 3 hour surgery ended up being 4 hours. I'm sorry that had a blockage too, wondering if maybe my mom had that too. She also had like a bridge/loop on top of the stoma, but the took that out 7 days after. How did you do with the chemo? Congrats on the NED.. my mom had the same as you but called "Near" which I guess there may have been cancer cells present like you mentioned. 0/27 lymph nodes and clear margins.

ocstacy wrote:

I did chemo/radiation for 5 weeks and had complete response. Only scar tissue remained. Surgeon suggested I may not need chemo after surgery depending on pathology report. Path report showed minimal residual cancer, 0/24 lymph nodes and clear margins. Oncologist did recommend chemo as she couldn't guarantee some cells did not get into blood stream and don't want to say "what if", if there were a recurrence even though chances were low. I had a temp ileostomy. I was not suppose to have reversal until after chemo, but did get a bowel blockage due to scar tissue 4 weeks after surgery. The surgeon reversed the ileostomy when he had to go in an remove the scar tissue. I was happy for the reversal but it did make it more difficult during chemo

My mom just did the same thing as you did and had a complication 2 weeks after surgery at home. They weren't clear on what it was. One dr. said abscess, one dr. said dehydration, one dr. said bowel obstruction, another nurse mentioned abscess and hernia. My mom was in a lot of pain after surgery and it was because of her blockage or whatever you want to call it. She also didn't do well on the OXY pain drug, no appetitive and she became dehydrated, very scary to see her that way. Her output was dry. I am glad she went to the E.R. and they put her on anti-biotics and it cleared. That whole post surgery was a scary deal, but he got through it, but it was tough. Her 3 hour surgery ended up being 4 hours. I'm sorry that had a blockage too, wondering if maybe my mom had that too. She also had like a bridge/loop on top of the stoma, but the took that out 7 days after. How did you do with the chemo? Congrats on the NED.. my mom had the same as you but called "Near" which I guess there may have been cancer cells present like you mentioned. 0/27 lymph nodes and clear margins.

The chemo was okay except for the fact I had diarrhea. Since my ileo was reversed early because of my blockage, that made it tough. My oncologist did make some adjustments on dosage and prescribe some meds to help. I also do have neuropathy in my feet, which didn't really kick in until about a month after I finished treatment. I was able to do chemo without a port. I figured I would try as I only had 6 infusions and they were 3 weeks apart. I did Xelox which was an infusion every three weeks of oxi, and xeloda pills for two weeks, and one week off. The oxi would cause sensitivity to the cold that would last a couple days after infusions. I live in Michigan and had chemo in the middle of winter so that didn't help. Also, I had first bite syndrome for a couple days after the infusion. The first bite of anything would send pain from ear down jaw line then after that it was fine. That was kind of weird. I'm so happy your mom had good news after her surgery tho. She's almost done.

Thanks for the note on First Bite - first time I've heard of that one.

NHMike wrote:Thanks for the note on First Bite - first time I've heard of that one.

There are a few on here who have had it. I don't think it's a common side effect. The first time was shocking, after that I was ready for it. It is weird though, you have that pain when you take your first bite of something, then any subsequent bite is fine. Only lasted a day or two.

..

I live in Michigan and had chemo in the middle of winter so that didn't help. Also, I had first bite syndrome for a couple days after the infusion. The first bite of anything would send pain from ear down jaw line then after that it was fine. That was kind of weird. I'm so happy your mom had good news after her surgery tho. She's almost done.

I had to Google "First bite syndrome" sounds so painful. I can't imagine what the weather is like in Michigan in comparison to 90 degree weather over her in CA during Thanksgiving. Sometimes I wish it would be cold over here, Must be freezing there right? You are almost done too right? I will be thinking of you, KIT

If robotic ULAR is being proposed, ask the surgeon about the plan to tie the inferior mesenteric artery. The location of the tie can greatly affect the risk of LAR syndrome after surgery. If they have to do a "high tie" with the DaVinci, it may be better to opt for open surgery. A mid-rectal tumor should leave enough of the lower rectum intact to do a low tie, preserving important nerve function. If you're 30, you have a whole life ahead of you. LAR syndrome is not something to deal with at any age, but especially for someone with a job, family, and perhaps the desire to travel. Do your homework now. Open surgery is tough, but after two months of recovery you'll very likely be functioning well. LAR syndrome could last the rest of one's life.

My two cents.

susie0915 wrote:

NHMike wrote:Thanks for the note on First Bite - first time I've heard of that one.

There are a few on here who have had it. I don't think it's a common side effect. The first time was shocking, after that I was ready for it. It is weird though, you have that pain when you take your first bite of something, then any subsequent bite is fine. Only lasted a day or two.

I have had it, as well. I hate when I forget about it and start to eat and it hits. If I remember, I can be ready for it.