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Dodged a bullet

imagineit2010's picture
imagineit2010
Posts: 153
Joined: Jan 2010

But the gun is still pointed at me. My second lymph node biopsy came back same as first, negative. Just swelling and lymph tissue. They were all enlarged from top to bottom and active on Pet scan back in March but there appears to be no Cancer. They took one out in the groin three months ago and one in the armpit last week and found nothing in either. So on to the primary target. Are there any options? I asked my Onc about other scenarios with treatment besides surgery and he flat out said,"you'll die from this cancer". He said they have a 1% chance of cure with chemo and radiation and a 60% chance with those and surgery. I'm stage II rectal and breezed through the neoadjuvant treatment. I know what has to be done now but I'm double checking all options. I remember reading about someone on here who skipped the surgery. Can anyone refresh my memory or know the outcome? I know there are no guaranties and I don't expect any but it seems surgery is certainly no sure thing either. Like most here I think statistics suck, but really, what percentage of stage IIs never need future treatment. It seems many do all the right things only to have it pop up in a couple years. Is it really just the luck of the draw????

PGLGreg's picture
PGLGreg
Posts: 741
Joined: Jul 2006

I don't think statistics suck. I think that's all we have to guide us in deciding treatments. However, I'm distrustful of the statistics you quote from your oncologist. They sound lots more pessimistic than figures I've heard. I'm within 4 months of my 5 year term of watchful waiting for a possible recurrence, myself, after having surgery, radiation, and chemo for stage 2a rectal cancer. I thought the cure rate for this was up around 80%.

If I understand you, you've had neo-adjuvant chemoradiation, but you're thinking of passing up surgery? And your oncologist says you have a 1% chance of surviving 5 years without surgery? Well, I guess that could be right -- I don't recall ever hearing any figures for that. But why would you refuse surgery, anyway? If you're aiming for a cure, not just palliative treatment, you need to have surgery, according to what I've heard.

--Greg

imagineit2010's picture
imagineit2010
Posts: 153
Joined: Jan 2010

Thanks Greg, I believe he was trying to scare me because he knows I'm reluctant. It took me six months after diagnosis for me to get to a place, mentally and physically, where I felt comfortable starting conventional treatment. I'm always looking into options and, for me, surgery is the last option. I was reluctant to do the neo-adjuvant chemoradiation and I believe my preperation contributed to my tolerance of it.
Glad to hear your doing well with the choice you made. I would just like to know if that is truly the only option. Like you said, about seeing other numbers, I don't think there are any numbers for that option since probably nearly everyone follows the recomended course of action. Everyone knows they can take out 2 feet of colon plus the rectum and it could come back right next to the surgery site. I'm functioning better now (pooping)than I have in years and I hate the idea of loosing it all unless absolutely neccessary to keep me alive. Which I know is probably the case. But I will still explore and entertain the idea that it's possible.(for another couple weeks, that is)

Lovekitties's picture
Lovekitties
Posts: 3355
Joined: Jan 2010

You don't mention why you are considering no surgery. From your profile, I expect that you feel that a perm. colostomy would lead to a 'crappy' life afterwards. If that is the case, I think you might want to reconsider.

I had mine done March of this year. My quality of life is so much better than before or what the alternative would have been with no surgery.

As a stage II you have much more going for you.

I would recommend visiting an Ostomy Nurse ( your doc can certainly put you in touch with one). Mine was great about helping me understand what life is like after a colostomy. She also shared some great reading material.

Do some more research before you make the decision. Life after a colostomy can be a good as you want it to be. Life with no surgery will lead to stage III and then stage IV, almost certainly.

Marie who loves kitties

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

it's good you're getting a second opinion. You're stage II and he says "you'll die from this cancer". I'm stage IV, I better not make dinner plans. I may not be around at 6pm with an attitude like his.

Statistics are just that. It's based on a very broad set of people who have numerous scenarios. They take into consideration someone who may be 95 and ready to pass away anyway, but since they also had stage IV colon cancer or rectal cancer the death is often attributed to the cancer. Enough of those cases would skew results. The same would hold true for people who were much younger and at stage I and they beat it. Statistics are a very general number that is subject to change. Everyone is capable of defying them.

I happen to think a lot of this depends on what treatment you get along with some luck thrown in. It can be either good luck or bad luck.

PGLGreg's picture
PGLGreg
Posts: 741
Joined: Jul 2006

I interpret the oncologist's "you'll die from this cancer", in context, as meaning that he will die from his cancer without surgery. I see no reason to doubt that. If you've got rectal cancer, you don't skip surgery.

--Greg

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

I think that if you have something like cancer, you need to get it out of you. Period. I do find that survival statistics to be so broad and general that they should not be taken too seriously, especially when they are not promising. It can be a lot of worry for nothing. Of course if the statistics are promising, then that's different.
Selective statistics ;-)
I think surgery is probably a good idea in any case

neon356
Posts: 137
Joined: Mar 2004

I think this one's pretty much a no brainer. Regardless of the exact numbers you stand a much, much greater chance of not beating the beast. Why take the chance.

Carl

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Nice guy your onc ehh?Does he drives? it is so dangerous.........

C Dixon
Posts: 202
Joined: Jan 2010

Why does the doc KNOW you have to have a permanent colostomy? Is he your surgeon or your oncologist? I would suggest going to a major cancer center to see a colon surgeon for an opinion.

Two years ago I was diagnosed with Stage IV Rectal Cancer. I had immediate surgery because I would have been completely blocked in a couple of weeks. The gastro who did the colonscopy told me that he never even got into my colon because the tumor was so big. I don't remember how low in the rectum it was but I think it was pretty low. Anyway, all those details to tell you that I didn't even have to have a temporary colostomy.

Find a surgeon you are comfortable with and trust.

Catherine

imagineit2010's picture
imagineit2010
Posts: 153
Joined: Jan 2010

Hi Catherine, I did meet with a highly respected colorectal sugeon back in January. He wanted to "try" a hand sewn anomostosis in hopes of saving rectal function. The case was also presented at a tumor board and the consensus was, likely permanent colostomy. Statistics show any tumor within 3cm of the dentate line will result in permanent colostomy, mine is 1cm. I think he was being unreasonably optomistic for the benefit of a chalenge. Anyway, my insurance changed and I can no longer see him. I have a consult with a specialist surgeon in two weeks at Cleveland Clinic but I don't expect to hear anything different.
Thanks, Chris

Jaylo969
Posts: 827
Joined: Jan 2010

Hey Chris! Glad you dodged another bullet. I'm not here to give you advice just encouragement from one stageII to another. Maybe rectal cancer is slightly different percentage - wise than colon cancer...I'm not sure ( have to look that up and find out.) I did the surgery first and then adjuvant chemo and the percentage rates given to me were were well above 80%

Who knows if it is just "the luck of the draw"? I just did what I thought at the time was my best option. Didn't have a clue about juicing, herbs, eastern meds, etc. until mid chemo.
Chris, you are smart. You'll figure it out.

Best wishes always,
-Pat

462lt's picture
462lt
Posts: 118
Joined: Jun 2010

Well I go tomorrow to the surgeon and also have rectal cancer 1cm from the anal verge. I keep hoping that I will save my anus but will find out tomorrow. I totally understand your not wanting an APr I don't either which will end in a permenant colostomy. I guess I can;'t answer the question until I know the information but I totally understand where you are coming from. I started this whole process trying to save my anus and not sure what I will decide if I get info I don't want. I did the radiation, Xeloda and Oxiplatin. I am so scarced about tomorrow odds are not in my favor 1cm is not much margin. Keep me informed about your research not big on statitics either they really don't keep them for people who choose to do nothing. I am sorry if alot of people don't understand this because there are some really brave people on this board that I admire alot for fighting so hard but we all make decsions about our own lives and experiences. Wish you all the luck Laura

imagineit2010's picture
imagineit2010
Posts: 153
Joined: Jan 2010

Thanks Laura, I hope things go well for you today. We'll have to share notes. :) Looks like we are in the same boat and they're not giving us much of a paddle. I also have some issue with my blood counts all steadily dropping. I'm below normal on all blood counts except the ones where it's good to be low. On those I'm higher than normal. Funny, my blood counts actually improved while on Chemo. Anyway, I hope the best for you too.
Take care, Chris

dschreffler's picture
dschreffler
Posts: 58
Joined: Apr 2010

Not sure the details of your cancer - I know rectal stage II, but, tumor stage, size, location so kind of hard to give advice. Did you have chemo and radiation so far? Have they seen the tumor shrink? etc...

So you had surgery to remove the nodes to check, but not thinking about surgery to remove area of tumor growth?

You can see my experience with rectal cancer by looking at my "about me" page. I had a TAE outpatient surgery for mine. Home same day.

Much luck in this difficult decision. You'll see I researched options and while stats are a guideline for a large population, individually we may land in the 80% or the 20%, so it is a gamble, but I play the odds, stats are what they are and without, not able to make optimal decisions. Yes, it is luck of the draw, but like in cards, you hold the best hand and you win. Betting heavy on a pair of 2's not always a smart idea, but the 80% chance - like 2 pocket Aces or Ace-King and I'm willing to go all in.

Reoccurrence is still possible, but hence annual scoping to catch the things early, and ideally avoid chemo/rad/ evasive surgery again.

Peace,

462lt's picture
462lt
Posts: 118
Joined: Jun 2010

My tumor is pea size now (after rad and chemo) scheduled for TAE on Sept 22. How close to anal verge was your tumor? Glad you are doing well Laura

imagineit2010's picture
imagineit2010
Posts: 153
Joined: Jan 2010

Hey Laura and dschreffler, what was your T- level? Mine is T-3 and TAE is really only recomended for T-1 & T-2 so that was never given to me as an option. Did either of you request this option from your surgeon or did they offer it? The studies pretty much all discourage the TAE for T-3 because of high recurrence rates. They haven't checked yet how my tumor responded to the neo-adjuvant treatment. It is surely a tough decision to go with a radical resection and have more peace of mind or the TAE and get more frequent scopes and tests and worries. Do you know if they remove any lymph nodes to test them when they do a TAE or they can't because they're not opening you up? How then can they tell for certain about lymph node involvement?
Thanks, take care,
Chris

462lt's picture
462lt
Posts: 118
Joined: Jun 2010

I had a T-2 tumor but alittle worried that I did not get complete response from chemo and radition I still have a small tumor. I told my surgeon straight up first meeting that I was not interested in a colotsmy so he had better have another option lol.He recommended a certain protocal which I followed that showed a good response for t2 and t3 tumors. They do not remove any lymph nodes during a TAE. I asssume they count on CT's and Pets to find that I had both several month ago before treatment started and they were clean. Not that that really means anything. When are they going to check your tumor for response to the treatment? I am going ahead with the TAE because that is not really burning any bridges if I need more radical surgery can always decide later. My biggest worry is the envirnment I work in. It is very hot here in Tampa and I work in an unairconditioned building and do very physical work lots of lifting contorting and bending I just can't figure out how a colotosmy would allow me to work. When I say hot I mean sometimes it 109 degrees in the cabin of the airplanes and 75% humidity. I sweat alot. Oh well I guess I will cross that bridge when and if I need to. Laura

Aud's picture
Aud
Posts: 480
Joined: Oct 2009

Everyone's story is different, of course, and mine is this: stage I rectal cancer, T2 tumor at or just above the dentate line, determined to be T2 only after TAE (but earlier, based on ultrasound/MRI, believed to be either T1 or T2--team wasn't sure--though surgeon was pretty sure T2 by "the way it felt") Tumor Board recommended TAE based on biopsy, US, MRI. After TAE, positive margins (not good) laterally, but not depth-wise. My surgeon then said 5 different doctors would have 5 different opinions. I didn't do any research (till later) and listened to my surgeon who had recommended and then did a re-excision about a month later. Clear margins this time, but rather questionable as the surgeon was not able to get 1 cm margins due to location (so close to sphincter). His thoughts were there had to be some cancer cells left behind. Followed by 6 weeks radiation/oral Xeloda with its usual lovely accompanying side effects. PET scan clear in March, frequent checkups every 3 months. My surgeon said that 80% of recurrences usually show up in the first 2 years and 90% in the first 5 years.
Did I do the right thing? I don't know. My surgeon's original idea (before US/MRI/TAE) was chemo/radiation followed by APR/colostomy. My mind was swirling and just when I thought I was getting "used to" the idea of colostomy, Tumor Board recommended TAE. My surgeon feels we did the right thing but I torture myself now and then.
Here's some things I did learn after doing research afterwards. Radiation does work better on tissue (that is still well oxygenated) before surgery since there is hypoxic tissue after surgery that doesn't necessarily respond as well to radiation. With TAE, no way to know for certain if lymph nodes involved since, as you said, you're not opened up. US/MRI are helpful but not perfect. And, as Greg said, and from what I've read, mets can happen with any T type, although other characteristics also come into play (i.e. the type of tumor, not just T type, lymph/vascular invasion).
As someone else suggested, I'd talk to an ostomy nurse. When I thought I may be having APR, and feeling overwhelmed and sad, I talked to my surgeon's physician assistant. He was very positive and helped me to feel that life could be full and normal after colostomy. We talked about everything: work, sex, exercise. I know it's tough and I feel for you, Chris. Prayers and good thoughts to you for your visit with your surgeon.
~Audrey

taraHK
Posts: 1961
Joined: Aug 2003

Everyone needs to make the individual decision that is right for them of course. One thing I love about this board is the respect for personal choices.

But for what it is worth, may I share my personal experience:

1. I have a permanent colostomy. It was a hard adjustment initially but is honestly no big deal now. I can do everything I wish including swim, hike, 'intimacy', sauna, travel....and wear anything I want (except bikini!)

2. I was diagnosed Stage III rectal. So, my "stats" were worse than yours. That was almost 8 years ago. I have had a great 8 years! and planning on many more.

By personality, I lean towards 'agressive' (treatment, that is!). I've gone for traditional/Western medicine (surgery, chemo blah blah) but supplemented by some 'alternative/complementary' -- and a hell of a lot of "Attitude".

I wish you ALL the best with whichever path you choose -- you will make the right choice for you.

Tara

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Yes, make the right choice for you, then go get that surgery! No really, be agressive! Your choice, your life, but we want you here!!

Raquel

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi,

It was likely me you are remembering who skipped the surgery. First of all, I am outraged that your doctor said "you'll die from this cancer"- especially with you being in an earlier stage! He's a doctor I'd get rid of quickly!!

Anyhow, I was dx'd at stage IV and wasn't a surgical candidate at first because it was so bad in the liver and lungs. I did Folfox chemo for 6 months, had a fairly good response to that, then was told it was time to concentrate on my initial rectal tumor. Since it was so low and near the anus, I was told having radiation before surgery would shrink it and make the possibility of not needing a permanent colostomy (due to the location) as likely. So I went through 6 weeks of radiation and my rectal tumor completely disappeared and follow up biopsies showed no sign of cancer in the rectum at all. So, my colorectal surgeon and I made the decision together to not do the surgery. I felt very strongly about it at the time- my cancer had already spread anyhow and I didn't see the need to get used to an ileostomy bag and then the reversal later if there was no longer any cancer in the rectum. My surgeon told me if it had been a year earlier (this was March 2008), she would have insisted on doing the resection anyhow, even with no more signs of cancer. She said many colorectal surgeons are now deciding on a case by case basis whether to do the surgery or not. I must emphasize, however, that this is more the situation in patients that are already stage IV, maybe some stage III. The surgeon also told me at the time if I had been a stage I or stage II, she would have been more likely to insist on the surgery to prevent a recurrence there & hopefully prevent any spreading of the disease.
With that said, I do happen to have a neighbor who had stage I rectal cancer, went through the radiation and had a complete response (tumor and tumor cells disappeared). That was 8 years ago and she's never had the surgery or any kind of recurrence.

With all that said, I don't know if you also read here a few months back that I have had a recurrence in the rectum at my original tumor site (along with the recurrence in my liver and more growth in my lungs). This was discovered in February. Since then (in March), I started on a new chemo- was scanned in May and things were stable. I have my next scan in two more days- Monday Aug. 31st.
Even with the rectal recurrence at this point, the only reason I would consent to having a rectal resection surgery now would be if the tumor were really large and was causing a blockage or other problems. At this point, I've had some bleeding but no other complications or problems from it. If I had this local recurrence and I was initially a stage I or II- heck yah, I'd have the surgery and get it out of there to prevent it spreading into lymph nodes or organs. But as a stage IV patient, I really see no reason to put myself through a surgery for something that isn't bothering me when I'm currently on chemo for stuff in the liver and lungs anyway.

So you have to be the one to make your own decision. My stage I neighbor is very glad she never had the surgery, and she was fortunate to never have a local recurrence. BUT, as you know, a recurrence is possible and does happen in some. At that point, it could be recurring as metastasis in other organs, and then the prognosis for cure really takes a dive. Definitely a tough decision.

Best wishes to you...
Lisa

imagineit2010's picture
imagineit2010
Posts: 153
Joined: Jan 2010

Thanks Lisa, as soon as I saw your post I remembered it was you. Obviously your condition was different than mine and thanks for providing some details to your situation. I know some people on here voiced a concern for the Oncologist's choice of words but wouldn't you agree? If I was stage II and sought no treatment wouldn't you assume I would eventually succum to the disease? Even stage I? Even pre-cancerous polyps? I mean, isn't that the course of this disease? Isn't the plan usually, catch it early, treat it agressively, stay vigilant to follow-ups? I don't fault the Onc for using the direct approach for my options. (I don't really like him much for other reasons). Death is always one of the less popular options...
Lisa, did you know the T-stage of the primary tumor? Can you be a stageIII or stageIV with a T1 or T2 primary tumor. I'm guessing you can if the spread was via the blood stream. I guess alot of this is luck, good or bad. Some stageIV's do pretty well if the metastasis is in a treatable organ and some have the first spread go directly to the brain or bone. It's crazy. I'm sorry to hear of the recurrance but I'm glad you are stable for the time being. Maybe this new Chemo will do the trick. Here's hoping the scan looks good.
Take care,Chris

PGLGreg's picture
PGLGreg
Posts: 741
Joined: Jul 2006

"Can you be a stageIII or stageIV with a T1 or T2 primary tumor?"

I'm not very knowledgeable on the ins and outs of staging, but I think that would be a "yes". If cancer is detected in the lymphatic system, you're stage 3 (or 4), regardless of the Tx type. If you have a distant metastasis, you're stage 4, regardless of the Tx type and regardless of whether cancerous lymph nodes are found.

--Greg

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

In most cases there is more long-term benefit from surgery than from chemo or radiation. But you never know.

The litmus test... IF you had a recurrance or spread and became stage IV, and you choose not to do surgery, would you beat yourself up over it? Or would you be fine with your original decision, knowing that you passed up doing something that could have made a difference?

When I was having a very hard time with chemo and considered dropping one, if not both, of my chemo drugs, I asked myself that question. I realized that I could NOT live with myself if I didn't do everything I could for every ounce of a chance of keeping the cancer from coming back. If I have a recurrance and know I did everything I could, then I can still be at peace with myself. If I have a recurrance and know I didn't do what was recommended, I'd forever be beating myself up.

John23's picture
John23
Posts: 2140
Joined: Jan 2007

A cancer tumor spreads cancer cells for as long as it's in your body.
The individual cells can not be detected with present-day technology,
and I seriously doubt it ever will be.

The stats that your onco gave you are fairly accurate, since the odds
are always better for those that have a tumor surgically removed, rather
than just treated by hit or miss chemicals.

Yeah, I know seeing those words in print P's off a lot of people, but if
you don't face reality, you'll be a member of the "they never told me" group.

The odds are better for those that have surgery and nothing afterwards,
than cases of "no surgery", and all chemo and radiation.

That's why he's telling you that the odds are better if you have surgery
to remove the entire tumor area.

I would suggest you visit the UOAA forum and learn about colostomies,
and how they are often considered "life saving".

You've waited a long time since diagnosis, and every day you
put off surgery can work against you. If you have a tumor, get it
out as fast as you can, and deal with the surgical aftermath as best
you can.

Both chemo and radiation can do more long-term damage than
a decent surgeon.

Good luck; good health!

John

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