New to board

[mike1965]

Hello new to forum. Been reading the board for last few months. DX with rectal cancer sept 2015 stage 1. Dr removed polyp with local excision and cancer was found. My colo rectal doctor advised a wait and see approach. Oncologist said I should have LAR surgery. The tumor board said I need surgery. I am really confused. I am going for a second opinion with surgeon at USC. Have another scope schedule for next week. I am leaning toward the LAR surgery. If that is what the surgeon at USC suggested. He also requested MSI test. I have learned a lot over the last few months on forum. I feel good but oncologist and PCP state could still be cancer in my body. Not knowing makes it feel like time has stopped.

[weisssoccermom]

Mike,
Welcome to the board. Did you get a copy of your pathology report? Where exactly in the polyp was the cancer? Did they do an ultrasound on you to determine IF there were suspicious nodes? If you didn't have a rectal ultrasound, you need one. That will help determine whether any local nodes appear to be affected. Did you have a FULL THICKNESS excision?
My opinion....listen to the surgeon NOT the oncologist. However, now you have a tumor board making a recommendation....something to think about. Too often, we hear of surgeons giving opinions to patients about needing chemo and then oncologists giving opinions to patients about surgery. Surgeons need to leave the chemo to the oncs, and oncs need to leave the surgery to the surgeon.
Make sure that the surgeon you are seeing is a board certified colon and rectal surgeon. Here is a link to help you verify.
http://www.abcrs.org/verify-a-physician-2/

You have a difficult decision. A lot, IMO, would depend on a few factors. Are you an early stage I....meaning is your tumor depth a T1 or is the tumor depth a T2? Do you have any negative prognostic factors (you would see this on the path report)? Examples would be things like poorly differentiated, mucinous, signet cell, lymph or vascular invasion, etc.

The 'wait and see' approach is fairly new and has its merits. Another approach with an excision, particularly if you had a T2 tumor would be to have radiation which would 'sterilize' the nodal field. I had all the tests, did the chemoradiation, had an excision and then more chemo (my tumor was on the cusp of a T2/T3) and I have done quite well. April will be 9 years from my surgery date....June will be 10 years since diagnosis. There is no right or wrong answer here. The radical surgery does have some potential consequences but will give you peace of mind regarding the nodes. Even if no affected nodes are present, there is no guarantee. The excision provides you with a better chance of less problems but with no knowledge of the status of the nodes. IF you choose the excision, be 100% certain that you are willing to follow up with all the tests, etc. that will be required of you. If you don't want to do those, then have the major surgery.

I can tell you this....the surgeon wouldn't have recommended the 'wait and see' approach if he didn't feel comfortable about it. With every new approach, there will always be those in the medical field who don't approve. That's not to say that they are wrong or right....just that they haven't adjusted to a new approach. I will give you one piece of advice....you will likely NOT find any surgeon at USC who will differ from the standard of care...simply because that is a teaching hospital and they approach this type of situation with what has been taught...not necessarily what is 'new' on the horizon.

[O Stoma Mia]

The comments made by weisssoccermom are very good, and you should try to take all of them into account while making your up-coming decisions.

Finding a highly experienced, board-certified colorectal surgeon is very important if you are going to elect LAR surgery. The surgeon needs to know how to do a "Sphincter Sparing Operation" (SSO) and he/she must have already done lots of successful SSOs. Ordinary surgeons may not be able to give the required rectal surgery the attention that it demands. Please note that if you opt for LAR then after surgery, and for many months or years to come, you will likely experience what is called LARS (LAR Syndrome) -- which is a collection of bowel management problems that result from the removal of the tumor, rectum and lymph nodes, as well as removal of, or damage to, other tissue, nerves, blood and lymph vessels in the rectal area. When you meet with a surgeon, you should ask specifically about SSO and about LAR Syndrome, and see what the surgeon says. Also ask whether the surgeon would be planning to install a temporary ileostomy, as this would be yet another troublesome issue that would have to be dealt with.

As mentioned before, you should get a printed copy of your pathology report from the excised polyp, because all of the medical jargon contained in that report is very important in determining what should be done next.

Also, you need to know the exact location of the polyp within the rectum, because location makes a big difference in what kind of intervention is best to consider first:
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=53147#p419990

You should also create a signature containing the essential information known so far. Here is a link to a post on how to create a signature.
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=52681&p=414489#p421597
.

[ozziej]

Hi Mike,
OSM and WSM have given you really good information. As my situation was very similar to yours I thought I would tell you about my experience.
I had an adenoma detected during a colonoscopy. At first biopsy it was thought to be benign but as it was very flat I was referred to a specialist in endoscopic mucosal resection (EMR) to have it removed. The short story is that when it was removed it turned out to be malignant (very low in the rectum, at a T2 level, moderately differentiated, no evidence of vascular or lymphatic invasion). I was referred to a colorectal surgeon. I had an MRI which suggested that there was no lymph node involvement (bearing in mind that MRI is only 85% accurate). My surgeon said this:
"If you were an otherwise fit 45 year old (I was 56) then I would strongly recommend an ultra low anterior resection (ULAR); if you were a 75 year old with other health issues I would strongly recommend watch and wait; you are in the middle so it's a decision you will have to make. It depends on how much of a gambler you are, but I would err on the side of having the ULAR". He then went on to explain that he thought he could do SSO so that I wouldn't need to have a permanent colostomy, but that he would only be able to make an accurate assessment when he had my rectum in his sights. He explained that there was a trade-off, that I may go on to have LARS (as Mia explained). He explained that without the ULAR there was no definitive way to rule out lymph node involvement. He said that post ULAR with no LN involvement I had only a 3% chance of recurrence. He suggested that if I chose watch and wait and there really was undetected LN involvement then by the time this was detected "salvage" surgery would only be curative in 50% of cases. I have however seen better statistics for watch and wait, but they generally relate to those who had pre-adjuvant chemo/radiation. As a Stage 1 at no time was I offered pre-adjuvant chemo/radiation. Chemo/radiation is no walk in the park either, as many people are left with significant side effects that impact their quality of life.
This was probably the hardest decision I have ever had to make.
I chose to have the ULAR. I had it in March 2015, with a temporary ileostomy. I was lucky and really had very few problems with Susie stoma. I had my reversal in May 2015 and that was when the fun really began. I won't sugarcoat it; I had urgency, frequency, clustering, spasming, pain, and lots of blubbering and feeling depressed. However I was lucky in that I always had pretty good control. It was really only at the 6 month mark that I saw significant improvement. I'm now 8 months out from reversal and things are much better.
When I was having a rough time after reversal I often wished I'd opted for the watch and wait. After all, my surgeon has me on the same surveillance schedule that I would have had if I'd chosen watch and wait, so I still experience scanxiety on a regular basis.
I have read recent research which suggests that selected Stage 1 rectal patients (well differentiated, no lymph or vascular involvement, T1 depth) will do well after local excision. I agree with both Jaynee and Mia that this newer approach may be a really good option as long as you fit the criteria, are prepared to adhere strictly to the surveilance regimen, and have a disposition which allows you to tolerate a significant level of uncertainty.
Wishing you all the best for the future, whichever way you decide.
Jan

[prs]

Mike, take a look at this thread: viewtopic.php?f=1&t=53498

The standard of care for rectal cancer is chemoradiation first, then the decisions regarding surgery or watch and wait can be made.

[weisssoccermom]

Peter...that may be true BUT....generally speaking, the 'standard of care' for a stage I patient doesn't involve chemoradiation. There are risks involved with that treatment and the medical profession has determined that the benefit offered by radiation doesn't outweigh the risks for a stage I patient. That being said, however, it IS considered standard of care for a patient with a T2 tumor who undergoes an excision to have adjuvant chemoradiation as a precaution. If you are a stage I patient, you're in this gray area....medical necessity doesn't deem radiation necessary AND insurance generally won't pay for it vs the extra added benefit of the treatments sterilizing the nodal field.

[mike1965]

Thank you everyone for your responses. My cancer was T1 it was in the first layer the submucous. However it was a flat polyp which concerns my oncologist and PCP. They did a CT scan and did not see any node involvement but that is not 100% without the surgery. The did see a little spot in Lung that they have to keep an eye on over the next year. The case was also reviewed by the tumor board at the hospital. They stated the LAR surgery is necessary. They are not convinced that the Colo rectal Dr cut out all the cancer. The margin was 1mm and they said that is too close. I do not have the actual report in front of me. I went to USC dr because I saw that they do TEM procedure which is less radical than the LAR procedure. I was trying to see if I could have a surgery that is in between. The USC Doctor wanted a MSI test done since my grandmother and uncle died from colo rectal cancer. My current surgeon has been doing this for the last 40 years and everyone states he is very good. I have a sigmoidoscopy on Monday. As I am being educated by my other doctors my concern is the lymph nodes. No way to tell without the LAR surgery. I have a wife and two kids am I willing to take the chance with the wait and see approach. As stated in a previous response if I do the wait and see it could turn into a salvage surgery because the cancer progressed. Not sure I could live with the what if. What if I had done the surgery earlier. This is what my oncologist stated that it could go from a curable situation to something much worst. Right now I am leaning toward the surgery but it helps to talk to others that have gone thru this. I have learned a lot by reading the posts on this forum. Thank you to everyone for sharing their stories.

[chrisca]

Watch-and-wait is controversial, but treatment is moving in that direction. It may take many years more before we have the tests to determine if all cancer is gone. You (and I) are early to the party. I had the surgery, but my tumor was stage 2 or 3.

Here is a paper to share with your doctors:
Nonoperative Management of Distal
Rectal Cancer After Chemoradiation:
Experience with the “Watch & Wait” Protocol
http://cdn.intechopen.com/pdfs/21491.pdf

If you opt for surgery, find a surgeon who is experienced with a "low tie" of the inferior mesenteric artery to preserve the sympathetic nerves that help stop the colonic contractions after a BM. That is the best approach to reduce the chance of LAR syndrome. This procedure wasn't well known at the time of my surgery. It should be now, but there are still surgeons who don't practice it. LAR is a barbaric procedure due to our non-intelligently-designed anatomy. Anyone undergoing it needs a top-flight surgeon who understands the consequences and impact on the patient for the future and is willing to do what it takes to minimize the chances of a bad outcome.

[Andrea1976]

Hi,
If I resolve my lesions in the liver than I am also T1 with peduntculate polyp. The stalk was clear about 2 cm long. Cancer on the top of the head of the polyp. I have met 1st surgeon and not sure if she recommends surgery. Tomorrow I am going to see a 2nd one who has 40 years of experience.
If you do the wait and watch. How is it monitored?
I see you had the polyp removed few months ago. There is no urgency?
Thanks

[mike1965]

Hello Andrea1976,

You stated the polyp you had was a stalk with cancer at the top. Did it go in to submucosa layer. Mine did go to the submucosa. Two issues I am struggling with is my polyp was flat and not a stalk which makes it harder for the surgeon to cut it out without leaving some cancer. My surgeon is confident he did but the oncologist and PCP are not so sure. The margin was only 1 mm. The wait and see can be risky if there is more cancer in there it can go to the lymph nodes. I was not that educated when I agreed to this approach with my surgeon that is why I am having a second opinion with another surgeon. That surgeon also does a procedure called TEM surgery which is less invasive than a LAR surgery. So I wanted to see if he could do that surgery. Still risky with TEM surgery because they do not take out the Lymph nodes. The way they monitor is do scopes, Ct scans and blood work. But my oncologist said if there is cancer still in me by the time it shows up it will be more advanced and results may not be as good. There is a risk. I am leaning toward getting the LAR surgery because not knowing for sure is very hard mentally.

[weisssoccermom]

Mike,
I disagree that if you choose the TEM and IF it comes back the cancer will be advanced. That is not necessarily true. IF you have followups, tests and monitoring done every three months (the correct tests as well), anything that the docs might see will be caught at an early stage. That is the entire premise at any stage for being monitored closely after any of the rectal cancer surgeries.

You are quite correct that TEM does not take out lymph nodes, however, there may be one or two 'retrieved' with the full thickness excision....depending on the patient's anatomy. I can tell you that when my excision was done, they 'harvested' I believe two. Now granted, two is a very small number but it is possible to remove some.

If your surgeon follows you up closely on an every three month schedule which includes either a CT/MRI, a rectal ultrasound, blood work and a rectal flex sig....he/she will have a pretty darn good idea what, if anything, is going on. Caught early, salvage surgery is highly successful. You need to feel comfortable doing what is in your best interest. I can only tell you for me, I made the best decision by avoiding the LAR and opting for the excision. I also didn't have the benefit of TEM back then as it was fairly new and the stats show a much better success rate with TEM vs local excision.

I understand your concern about the wait and see approach. I 'made' my own plan with my oncologist which included follow up chemo. You might consider asking your onc for Xeloda (oral) if you choose to go the TEM route. A good onc will not dismiss you but rather will work with you.

[mike1965]

weisssoccermom thank you for the information. My problem is my surgeon suggest wait and see. But my oncologist, Tumor Board and PCP are total opposed to this approach. They say LAR surgery is my only option. I asked Oncologist about TEM procedure and he said no way would he advise that as an option. My team is divided with polar opposite views. I do not like that. I really do not like the oncologist too much. He told me if I wait and there is cancer left in me and it goes to the Lymph nodes and metastasis to other organs it will go from a curable situation to a manage situation and I would not live too long. This is why I am seeking a second opinion with a Surgeon at USC because they do the TEM procedure and better known cancer center. He has not given his opinion yet. I do not want the LAR's procedure if I can avoid it. I see my surgeon next week for a sigmoidscopy. Also the USC surgeon has ordered a MSI test because my grandmother and uncle had rectal cancer. I guess right now I am on a wait and see because it has already been almost 4 months.

[weisssoccermom]

I will tell you my opinion (and something we have discussed on this board many time)...let the SURGEON do the surgery, the ONCOLOGIST be in charge of the chemo and the PCP...well, even if you like him/her a lot...they are NOT qualified as a cancer expert. Too often I have seen an oncologist telling the patient which surgery he/she should have...yet that oncologist isn't in the OR and doesn't operate. On the other hand, I've also heard of surgeons trying to tell the patient that they don't/do need chemo and frankly, that decision should be left up to the oncologist...it's his/her specialty. As far as the PCP....well, I trust mine implicitly, but she would never pretend to give advice on what my cancer treatments should have been....it isn't her specialty. I'm not trying to sway you one way or another...just saying...IF you are trusting in different doctors (surgeon, oncologist) then let each of them do his/her job....his/her specialty...and they shouldn't be trying to tell you what the other doctor should/shouldn't do. The tumor board is another thing....who sits on it? I have no idea and you have to take their opinion into consideration.

As far as your oncologist...I might give you a piece of advice. If you don't like him, then PLEASE, whatever you decide....find another oncologist. Generally, he/she will be your main point of contact....the doctor that you will see for the next few years and if you don't like him and you don't trust or feel that you can work with him...search for another one now! It really isn't that unusual for patients to not go with the first oncologist that they meet. Cancer is a big deal...you should be working with doctors that you like and trust. You know, IF you decide to go with either the TEM and/or the 'wait and see' approach, your surgeon will be following up with you as well as the oncologist. It may be that the surgeon is the one who will order all the follow up tests...certainly he will be the one to do the rectal ultrasounds and the rectal flex sigs...not the oncologist. The surgeon is the one who went in and saw the tumor and did the surgery...not the oncologist.

Considering you have a very early tumor and they apparently were able to take it all out (albeit with very small margins) during the scope, I would seriously consider the TEM procedure....if nothing else than another biopsy. That way, the pathologist will be able to tell if there are any cancer cells in the wall of the rectum. IF there are cancer cells, then, I believe all the doctors will likely recommend that you undergo the LAR. The full thickness excision is better than just a biopsy from a flex sig....and you really have nothing to lose. No one is committing you to stop at the TEM procedure....it is just another tool that you can use to help you make a more educated decision. Just something to think about.

[cathy123]

Mike,

I can definitely relate to your situation. My cancer was a little more advanced than yours but still stage 1. I was all set to have lar surgery, went for a second opinion just to be sure and they said oh no, you need chemoradiation first because your tumor is so low that you would otherwise need a permanent bag or would risk leaving some cancer present. Original surgeon said no but he set up a 3rd opinion who agreed radiation was probably best. I then saw an oncologist who strongly disagreed with the decision to have radiation.

It was so so hard to make those decisions as there were definite risks on both sides and I am not a doctor. In the end I opted for the most aggressive treatment mainly because I have young kids, am not really a risk taker as far as this goes, and knew I would not be able to live with myself if the cancer came back and I hadn't done everything possible. I turned out to have lymphovascular invasion so am definitely happy with my decision to be aggressive. Reversal was 4 months ago and I have significant bathroom issues, but at the same time I am getting back to a normal life in other respects.

I personally would not be comfortable with just a 1mm margin. But with only t1 and no sign of spread maybe the tem would be the right choice. The LAR and after effects is no walk in the park. I hope your second opinion is enlightening and that you like your team of doctors there.

[Andrea1976]

Hi Mike,

I assume from the pathology report that it did reach the submucusa. Because it said invasive on my report. If not in the submucusa - it would say in situ. That's what I have researched online. 1st surgeon will speak about my case at a conference and she will tell me what other surgeons will say. I will also have a another app tomorrow.

Just let me clyrify what we know. If we don't have the surgery than we can't know if the cancer spread to any lymph nodes, correct? It could just sit there now and make your way to mets? Also my polyp was at the descending colon. Would me surgery be different than yours?