New Diagnosis- stage 1 rectal cancer

[Milton]

Hi everyone,

I'm new to this forum. I'm a 28 year old guy, recently diagnosed with stage 1 rectal cancer. Its been a real shock and I've been reading lots of posts from this forum and can't believe how many of us are affected!

I'm struck that I haven't read many positive stories about stage 1 diagnoses- mainly stories of recurrences and upgrade of stage 1 to stage IV. My oncologist and surgeon have both emphasised how lucky I am it was caught early(and reading lots of posts on this forum, I realise this is true- so I'm definitely not complaining).

My tumour was staged as T2NOM0 after lots of confusion and a pre-op PET due to some unusual looking lymph nodes on my MRI. The nodes didn't light up on PET so they assumed they weren't affected. I went on to have a lower anterior resection with temporary loop ileostomy formation. They removed 25 nodes with no positive ones on histology and no lymphovascular invasion. it was moderately differentiated.

Would love to hear from other stage 1's- my oncologist and surgeon recommended no chemo or radio as the prognosis is quite good without these in stage 1 disease, but after reading some of the stories on the forum, this worries me- did any one with stage 1 get chemo after their surgery?

[Ajane]

Milton, You are a fortunate young man! One thing you might keep in mind when reading the stage 1 stories of progression to recurrent metastasis, like mine, is the lower the tumor is to the anal verge the more likelihood the distant recurrence. Because of the blood pathways, most of the time they travel to the lungs.
I suspect your tumor was not in the riskier, ultra-low range, requiring neoadjuvant chemo to shrink the tumor and rad to sterilize the field. The good news is the higher the tumor, the less likelihood of a distant recurrence. I think Oncologists will tell you adjuvant treatment isn't necessary. If you are uneasy about it, I would present your concerns, like your tumor being moderately differentiated, to your Oncologist. I suspect he will tell you the bad out ways the good and insurance wouldn't cover it anyways. As far as my story, you can read my signature. It pretty much covers it. I do agree that most stage 1's don't tend to stick around because they've been able to move on from cancer. So the picture is somewhat skewed here towards those who are still fighting.

[weisssoccermom]

Milton...you need to realize that most people with a stage I diagnosis DO do quite well and go on to put their diagnosis behind them. Hence, they don't generally come to forums like these. They have surgery, continue to get checkups and get to the point where they don't dwell on their diagnosis anymore and move one with their life. When you see the people on here with stage I who had a recurrence, remember that those are the MINORITY and yes, while it does happen, it still isn't the normal course for the stage I patient.

No, we don't have a crystal ball to tell you what, if anything, is going to happen to you. You can only listen to your doctors and follow their plan and believe that you, like most stage I patients, will completely beat the disease. I know it's easy to allow your mind to go to all of the 'what if' scenarios but try not to.

Good luck.
Jaynee

[SurvivorsSpouse]

Stage 1 is generally clear cut on chemoradiation vs no chemoradiation. Prognosis is quite good with stage 1 in general using only surgery.

Remember, treatments are all statistics based. Statistically speaking, you have a greater chance of having a serious adverse event on chemo than receiving any benefit from it at stage 1. Chemoradiation is a harsh treatment with serious consequences in general, the benefit comes when you have to choose between the chemo effects or progression of tumors.

But then again, you beat the odds by getting colorectal cancer at such a young age. I suspect your oncologist will put you in an accelerated colonoscopy schedule and you will probably be best served with a periodic visit to a GI for the remainder of your life, as soon as you clear your 5 year mark.

[JJ2212]

I 100% agree with Jaynee. I suspect a lot of stage 1 folks move on fairly quickly after their treatments. A lot don't want to stick around in a cancer support group once they are cancer-free.

My greatest wish for you is that you get the support that you need from the group now and move on quickly like others. It means you'll have put this behind you for good.

Take care

[Jacques]

... I went on to have a lower anterior resection with temporary loop ileostomy formation...

Milton - I'm not Stage I, so I can't answer your main question -- which seems to be a question about recurrence for Stage I patients.

However, I do have a couple of comments to make, but these comments are not about cancer recurrence but about long-term effects of cancer treatments. As others have already said, the long-term or delayed effects of cancer treatments such as chemo or radiation can seriously affect a patient's quality of life (QOL) for the remainder of life. But since you won't be taking either chemo or radiation, this doesn't affect you.

However, you did have two surgeries as part of your cancer treatment -- a Low Anterior Resection (LAR) and an ileostomy. Then later on you will have a third surgery -- an ileostomy reversal surgery. It turns out that these three surgical "treatments" can also have long-term adverse effects. In the case of LAR, the long-term effects relate to difficulties in bowel control (and perhaps also difficulties in bladder control or sexual function) due to whatever surgical maneuvers were done in the pelvic area during the operation. This collection of problems is called "the LAR Syndrome" or LARS for short. So, since you did have a Low Anterior Resection, you can expect that you will have a period of bowel re-training necessary after you have had your ileostomy reversal. You may need to work closely with your doctor(s) to work out a solution for overcoming whatever difficulties you may experience once you have had your reversal and once you are in the 5-year surveillance period.

Then there is another non-cancer problem to deal with, and that is the possibility of an incisional hernia occurring either where your LAR incision was made or where your ileostomy incision was made (or possibly in both locations). This can happen if you lift very heavy weights or do something that produces a great deal of sudden pressure or tension in the abdominal area -- for example by coughing or sneezing very violently. If this happens and a hernia occurs, then there is no solution but to eventually have a hernia repair operation to try to fix the situation. As others have already mentioned on this forum, an incision like a LAR incision never heals completely. Even after months or years there is the possibility of a hernia occurring because there is one layer in the incision that does not, and cannot ever repair itself completely. This means that from now on your incision sites represent a weak point in your abdomen, so you must be careful about any abrupt abdominal movements or excessive pressures. This includes excessive pressure straining while on the toilet when dealing with constipation, etc.

I'm mentioning these things not to scare you but to alert you in advance to such facts, and to say that there are ways to prevent, avoid, or manage these kinds of things.

For example, to help with LARS you could try doing Kegel exercises, or pelvic floor exercises to strengthen your sphincter muscle response, which might, in turn, help reduce you bowel management difficulties. Then, for hernia prevention, you could invest in an abdominal binder (hernia belt) to use if and when you need to do heavy lifting (like lifting big suitcases) etc.

[Kick'nAssCancer'sAss]

I find that planking was my best exercise since my LAR. It is tough to start but I do six minutes a day now and have had no issues.

[Jachut]

My diagnosis was similar, getting on for six years ago now, but I was stage 2 - T3N0M0 - no node involvement out of the 23 they took out. I had the standard chemoradiation, surgery and then chemo (5FU) treatment and I have never had any sign of recurrence in the six years since. I quit seeing my oncologist a few years ago now and I only see the surgeon once per year - I'm anticipating when I see him again mid year he wont really want to see me again.

I'll second the effect of cancer treatments - thank goodness for you that it was caught that early and you don't have to do radiation and chemotherapy. I would quite honestly say that those treatments completely ruined my health and vitality - I don't think there's any coming back from them for me. I just have to accept my new normal - but its a cancer free new normal and for that I am happy and grateful.

Ironically, I'm having a bilateral inguinal hernia repair in 2 weeks - open - for hernias that are completely unrelated to my cancer surgeries. I had them before, both direct inguinal hernias, supposedly unheard of in a female. Go me!

[Lordswood77]

Hi,

I was stage 1 in 2013 (age 35) and had chemoradiation to treat a low tumour. Following treatment I had a LAR with an ilesostomy which was reversed some 3 months later. Retraining the bowel is a challenge and I continue to struggle with certain foods. It's manageable though.

My prognosis was good as there was no node infection so no post op chemo required. My first year scan showed NED. However on my 2nd year (sept 15) scan three nodules appeared. I was shocked to find that my cancer had returned. Over the past 8 weeks I've had 2 lung surgeries and recovery is going well.

Being stage one I was happy with the advice not to have chemo but I have since read that there is a 25% chance of stage 1 reoccurring and this is heavily linked to the location of the tumour as mentioned by Ajane in the post above.

As I sit here now I'm hopefully NED but I'll know more in a few weeks when I get my results. I'll then have a decision to make as to whether I now have some post operative chemo. Regardless I'll be under quarterly supervision.

If you are concerned then I would see if further treatment is possible or at the very least ensure you are under intense surveillance. Any reoccurrence is likely to happen within 3 years, but obviously can return after this date