New to forum, rectal cancer, must make surgery choice -- help!

[CatHair]

What to do? Screening colonoscopy found rectal cancer four weeks ago. CT scan & MRI imaging and labs are encouraging -- max T2 (says the radiologist), extremely low CEA, no apparent lymph involvement -- but the polyp is 4.4 x 2.2 x 1.5cm and located very close to the anus. The surgeon, who is around 60 years old, excellent and whom we like, was first talking about "standard" for this situation: taking my dear rectum (only way to get to the lymph nodes to check them) and doing colo-anal resection with temporary (3-month) ileostomy -- awful surgery that would leave me with sensation and control but basically at the whim of my bowels for the rest of my life -- but would eliminate any chance of spread. Then he looked again at the MRI and offered trans-anal excision -- much less invasive, outpatient surgery, one week recovery, though would have to be followed by chemo/radiation. It is not "standard" but his senior partner (surgeon is #2 in seniority in large practice in Texas Medical Center) concurred that it would be "appropriate to offer" and "not unreasonable" for me. He says if it were he, he'd go for the lesser procedure. We will talk again two days from now. Surgery date is 12 days from now, and I must make a decision a few days beforehand so they can set up the operating room.

My oncologist, who has little say in the matter at this point (surgery first in my case), is conservative by nature and says a T2 needs the radical surgery with no chemo, and if path shows it to be T3 then rad surgery with chemo. He considers the lesser procedure experimental, which it formally is but the surgeon says it has been in widespread use with good results including in his own practice. Oncologist says if the thing is T2 he would be reluctant to give chemo/rad following the less-invasive surgery, because he thinks it should have the radical from the get-go. He also says that if it is even T1 but with high risk features, it should go with the radical surgery. Onc says I should do fine whichever surgery I have.

I really don't want to be cut open, lose my innards and my ability to go about my life without being tied to the nearest toilet, let alone be in the hospital for five days, out of commission for another 3-4 weeks, then go back in 3 months later to reconnect my small and large intestines.

I don't particularly want to have chemo/radiation and their possible permanent side effects, though I could deal with it.

I do want to live a long time and see our boys (19 and 15) well into their manhood.

Grateful for any wisdom y'all can share. Thanks.

[weisssoccermom]

First of all, welcome to the forum. Sorry you had to join us but hopefully you'll find a lot of kind and caring people who can give you some advice.
As to what to do....only YOU can decide. Next, leave your onc out of the surgical decision. He is an 'expert' in chemotherapy and should be your doctor for that treatment. Talk to the surgeons about the surgery aspect of your treatment (and, btw, they should be left out of the chemo part of the equation .....and the possibility of chemoradiation).

If you look at my signature, I had an excision for a stage IIA diagnosis. I am totally happy with my decision and it was right for ME but I can't say that it is right for you. I would like to make one point clear....you stated that the radical surgery (not my term....what the medical profession uses) 'would eliminate any chance of spread'. I don't know who told you that but if anyone stated that having your nodes out would 'guarantee' you no chance of spread...they are telling you a big fat lie. It may very well lessen the chances of spread but there is no guarantee with cancer.

Honestly, that is a fairly large tumor to be taking out via an excision. Generally, the smaller the tumor (you should also find out how much of the circumference is taken up by the tumor) the better the results. Hasn't anyone talked about chemoradiation FIRST and then an excision? If not, I'm rather surprised why not. Then again, it may be difficult to get the insurance company to pay for the radiation treatments with a T2 tumor.

As for the surgery, it is rather straightforward. I had my surgery on a Friday, spent one night in the hospital (and that was only because of pain due to a previous tailbone injury), came home on Saturday and was doing the grocery shopping on Sunday. Fairly easy recovery all in all.

You know, you can always have the excision and IF the pathology shows something more extensive than a T2, you can opt for the more radical surgery a few weeks later. Just my opinion, but if you decide to have the excision, make sure you have the chemoradiation and, IMO, get your onc on board with 4 more months of chemo (pill form only...relatively easy to tolerate). There have been studies that have shown with all THREE (surgery, chemoradiation, more chemo) that the survival rates rival those of the more radical surgery. Again, I would have a serious talk with the surgeon and see if you could do the chemoradiation FIRST to shrink the tumor and to sterilize the nodal field.

Jaynee

[cathy123]

Sorry you are here. These are tough decisions. I was also t2, but the second opinion doc I went to recommended radiation first to shrink the tumor because it was so close to the sphincter muscles. My original surgeon wanted to go straight to surgery. I ended up going the more aggressive route just to be safe. It was really hard to decide.

If it were me I would get a second opinion at a major cancer center and see what they say about the surgical options.

My tumor was 3cm t2, and I also had a low cea. None of the 3 surgeons and 2 oncologists I consulted recommended considering the excision surgery. So I didn't really think about that route. I ended up having lymphovascular invasion (just in the vessels, no nodes affected), so I think that would have required the full surgery regardless.

The surgery was really not that awful. It was laproscopic. I was in the hospital 3 nights, and by two weeks I was getting around pretty well. The bag took some getting used to, but I am dealing pretty well with it by now. I am looking forward to the reversal though even though I am nervous about function afterwards. I am expecting the first few months to be rough, but hope I am one of the lucky ones who finds a reasonable normal in the end.

Good luck with your decision. Feel free to reply with any questions. For me I had to choose a plan where I knew I did everything I could to stick around to raise my kids and I could live with myself if it came back. Others put more value on reducing the amount of treatments they go thru.

[Trajan89]

Bowel surgery is not something to be played around with. Once they perform surgery on you, I guarantee that you will not want to live very long because of the deleterious effects of that kind of surgery on your quality of life.

Find a third option.

[cathy123]

Trajan - if I remember correctly you had a resection for a reason other than cancer. Trust me if you are diagnosed with cancer you have to get it out. There is no 3rd option. Very sorry you are still experiencing lots of repercussions and sharing facts is fine, but please don't add more unnecessary stress to someone already dealing with an awful situation. Many seem to get thru surgery fine.

[weisssoccermom]

I have to disagree on seeking an opinion at a major cancer center. The reason being is that they will NOT deviate from the 'standard of care' which is an LAR (lower anterior resection). I learned that as a teaching hospital/center, unless a patient is dealing with some very rare/strange/unusual diagnosis (this is not), they will do the surgery that they want to in order to teach their students and they just don't deviate. I'm NOT saying that a major cancer center is bad...far from it...but, for those patients I have known in the EARLY stages of the disease that have gone to a major cancer center....they were NOT offered any other choices other than the 'standard of care' (oh, how I hated that phrase). In addition, they were all treated super aggressively when they likely didn't need it. If you have found a surgeon or surgeons that you are comfortable with, that you trust and that you have a good relationship with...stick with them.

Remember, if you decide to have an excision and the path report comes back differently than you expect, then you can easily schedule the more radical surgery in a few weeks. No, it's isn't idea but nothing about cancer is.
Jaynee

[CatHair]

Thanks, Jaynee and Cathy.

[PGLGreg]

... talking about "standard" for this situation: taking my dear rectum (only way to get to the lymph nodes to check them) and doing colo-anal resection with temporary (3-month) ileostomy -- awful surgery that would leave me with sensation and control but basically at the whim of my bowels for the rest of my life ...

I am not "at the whim of my bowels", despite having an LAR 9 years ago that removed much of my rectum. I need to have more frequent bowel movements than when I had a full-sized rectum. It's not a big thing. Perhaps you're exaggerating the consequences of this "awful surgery". (But I don't know exactly what "colo-anal resection" means -- I never heard that term.)

Edit: As near as I can make out from looking at a few references, "colo-anal resection" refers to an LAR for rectal cancer which spares the sphincter. I believe that is the treatment that I (and a number of other stage 2a rectal cancer patients here) had.

[PGLGreg]

Bowel surgery is not something to be played around with. Once they perform surgery on you, I guarantee that you will not want to live very long because of the deleterious effects of that kind of surgery on your quality of life.

That's ridiculous. Many of us here had such surgery and have perfectly good lives.

[weisssoccermom]

Trajan...although I had a much less invasive surgery, I have to respectfully disagree with your assessment. Yes, I do believe it is true that you will likely never have the same 'normal' life that you had before surgery, BUT....I really don't think that it is so bad that one would wish that they weren't alive. A former member, Belle, went through an extremely difficult time after her resection....constant bowel movements, was tied to her house...in short, even though she tried numerous 'solutions', she never got much relief UNTIL she opted for a permanent colostomy. Belle and I went on outings together...sometimes just a day at a time, sometimes overnight and I can tell you that with her colostomy she had a full and wonderful life - a life she wasn't having prior. Is it what she would have preferred? Obviously not but.....it is what she much preferred over the alternative of being tied to the bathroom, etc. My point is that there are options for people whose quality of life after surgery isn't the best. For people who are diagnosed with cancer, multiple bowel movements or not...you want the dang tumor OUT and sometimes there are no other options. One does what is necessary to LIVE.

[ozziej]

Welcome to the club no-one wants to join. I think that for a T1 or T2 rectal cancer, making decisions about treatment can be overwhelming. Each option has its own advantages and disadvantages and only you can decide which way to go. The important thing is to have as much information at your disposal as possible in order to make that decision. By coming to this forum you've made a good start, there is a wealth of experience amongst the members of CT.
Other than depth of invasion (T2) of the polyp, were there any other high-risk features such as poor cell differentiation or vascular invasion? These might influence the decision you make about treatment. Perhaps if I share my experience it might highlight some of the options.

So, I had a colonoscopy done by a local GI in June 2014. This identified a 1.5cm tubovillous rectal adenoma. A biopsy was taken but adenoma not removed as too large for the skill level of the GI. Histology showed moderate differentiation but supposedly benign. CEA very low, CT clear. So, I was referred to another GI who specialises in endoscopic mucosal resection (EMR), which is where dye is injected into the polyp to make it lift and then the polyp is removed by cauterisation. All done via endoscopy. This was done in late October 2014. Histology came back T2 adenocarcinoma (this was a bit of a shock ). I was then referred to a internationally respected, highly skilled colorectal surgeon. MRI suggested no lymph node involvement or mets so now staged T2N0M0. What to do next? Colorectal surgeon offered either careful 'watch and wait' or ultra low anterior resection with temporary loop ileostomy. According to the surgeon, 'watch and wait' carried the risk that if there really was lymph involvement and I had a recurrence then there was only a 50% chance of curative 'salvage' resection. Also, I would need to travel 7 hours from home every 3 months for tests, colonoscopies etc, for at least 5 years. If I went ahead with the ULAR and the lymph nodes were found to be clear then 95% chance of 'cure'. Downside of option 2 was chance of needing a permanent colostomy, or ongoing incontinence issues. It was a hard decision but I finally went with the ULAR, which I had on March 4 this year, followed by a reversal of the temp ileo on May 23. As the polyp had already been removed it was too late for pre-op chemoradiation, and as a Stage 1 it was thought unnecessary to have post-op chemo as I had 0 out of 25 lymph nodes positive.

So I'm nearly 13 weeks out from reversal. Yes, the op was a hard one to bounce back from, and the ileo did take some getting used to (not nearly as bad as I thought it would be though). And yes, the first 12 weeks of post-reversal have been frustrating at times. Butt, I'm certainly not tied to the toilet. I've never had any control problems, the urgency stopped after about week 3, and now I very rarely have the clustering which can be a feature of early post-reversal. Yes, I've had to adapt my diet, but I've found that if I introduce something in very small amounts, even if I have an initial reaction, if I re-introduce it later my new plumbing can gradually tolerate it. So my life has change somewhat, but not dramatically.

So, all up, I don't regret the choice I made. I've had a pretty positive experience. However, I made my choice based on what I thought might reduce my chance of recurrence. I really wanted to know for sure that those lymph nodes were clear. If I was just going on what would be the least inconvenience I probably would have chosen the watch and wait option (this would be similar to having less invasive excision and then good surveillance afterwards). I will still need to see my surgeon every 4 months for the next 2 years, then every 6 months for the following 3 years. So, whichever option I chose, I would still be up for a lot of travelling and expense.

One last thing. An important part of my decision was that I had really good family support (my mum is a retired surgical nurse), my kids are adults, and I have a job that is really flexible, so these things made having major surgery much more doable.

Wishing you all the best whichever decision you make. Be sure to keep us posted about your progress, and reach out if you need support.
Jan

[sjring]

Let me throw my hat into the ring here and add my welcome to the club.

My primary is in the ascending colon, no where near the rectum and I was never a surgical candidate anyway, so I really can't offer an opinion for you on that, and you seem to be getting a good response from people who have been through these procedures.

I do want to comment on your Onc's position about the "less radical" procedure being "experimental". I honestly do not know if this is an approved newer surgery or still in clinical trial. I will say, that if it were not for people who tried "experimental" or "Clinical Trial" medicine (chemo, radiation or surgical) we would not have advanced our knowledge of this disease or how to treat it. Survival rates are increasing because people have tried experimental treatment. That said, not every experimental treatment or clinical trial is for everyone...only you can decide if the risk vs. return profile is right for you.

I was offered a clinical trial when I was first diagnosed, and I made the decision that the particular trial I was being offered was not appropriate for me and I opted for standard of care. I've seen other trials that I would like to have participated in, but for various reasons were contraindicated in my particular case. But I don't think an option should be discarded simply becuase it is experimental.

It's a very difficult decision to make and I wish you nothing but success whichever procedure you elect to have.

[Lee]

Bowel surgery is not something to be played around with. Once they perform surgery on you, I guarantee that you will not want to live very long because of the deleterious effects of that kind of surgery on your quality of life.

Find a third option.

Not sure what deleterious effects your are referring to. I have a very good quality of life. I have a permanent colostomy. Radiation destroyed 2/3 of my rectal muscles, was tied to the toilet anytime I ate. That permanent colostomy gave me my life back. For me, radiation was the worst, made surgery and chemo a breeze. I'm not in pain, and am in better shape, both physically and mentally, than some other people my age that never had cancer or this surgery.

Lee

[weisssoccermom]

Actually, I would like to clarify a little more on the excision. Please let me state that I am NOT advocating this procedure nor am I saying it is a negative choice either. It is not 'experimental' by any means. Prior to the TME (total mesorectal excision) that became the 'standard of care' surgery for rectal cancer, excision WAS the standard of care...outside of those who obviously needed a permanent colostomy. When excision was the 'standard', it was utilized across ALL stages...in other words, a stage I and a stage IV patient would receive the same surgery and the same adjuvant treatment....which was basically nothing. The statistics weren't exactly impressive as they put all stages in the same 'pot'. Along came the TME/LAR surgery and survival rates rose. Then, when chemoradiation became the 'standard of care' for rectal cancer, local recurrence rates dropped and overall, the excision went by the wayside. Surgeons have seen that for patients with early stage cancer, the statistics that were once associated with the excision are NOT the same....in other words, take out the higher stages and the statistics drastically improve. When I was diagnosed ('06), there were studies going on showing that adding chemoradiation to the excision option vastly improved the statistics. Basically, my point is this. On the one hand, you have chemoradiation+TME+adjuvant chemo compared to excision alone and one just can't compare the two. However, when you add the chemoradiation and even the adjuvant chemo to the excision ..IN LOW RISK, LOW STAGE patients, the statistics are quite similar. Then you have to compare the quality of life between the two surgeries and make a decision based on ALL the facts.

YOU are the only one who can make the decision to opt for the excision or the more radical surgery. Whatever path you choose, PLEASE don't dismiss the suggestion of chemoradiation. That treatment can't be considered 'experimental' and has repeatedly shown to drastically reduce local recurrence rates...something you don't want with a rectal cancer diagnosis. If I were in your shoes, and this is only MY opinion, I would push for the chemoradiation PRIOR to any decision you make. See how your tumor responds to that treatment and maximize your chances to have a better surgical choice.

[teachpdx]

Bowel surgery is not something to be played around with. Once they perform surgery on you, I guarantee that you will not want to live very long because of the deleterious effects of that kind of surgery on your quality of life.

Find a third option.

I don't often get angry when I see a post, but Trajan89 your post made me VERY angry You are entitled to your opinion, but you do not have a signature so we don't know what your frame of reference is. I had a LAR and have NO rectum and have managed to get on with my life. So how long have YOU been living with your low QOL? Sorry about that.

To CatHair, sorry that you have to be here. After my surgery, when I had a "complete response" meaning no evidence of disease, I spoke to my surgeon and I believe it was in Brazil where they do a "wait and see" approach by having chemo/rad and NO surgery and keep an eye on things. It is a big deal to have your rectum taken out and it is a decision that YOU have to make. Take your time.

The cancer can wait and your decision is critical and much depends on your ability to handle unknowns. Some people don't want the possibility of the cancer coming back and go for the gold. Others are more comfortable with uncertainty and want to keep their body parts. Consider who you are as a person and what works for you. Oncs are generally not comfortable going against the standard of care. If you want to treatment that is different than the standard of care you will need to stick to your guns.

Best of luck and remember it is your decision alone and you are entitled to a second opinion. Peace, Kristi