Question regarding surgery before chemo for rectal cancer

milliesmom · Regular Joined: 18 Mar 2008 Posts: 33

Hi,
I had a biopsy on Friday for a mass next to my colon outside the rectum wall, inside the abdominal area right next to the rectum. It turns out to be an abscess, infected with e-coli.

Since it is infected they have put off my chemo/radiation and have decided to clean out the abscess.
The abscess is about 2.5 cm x 2.5 cm. I was told today that if the abscess is too close to the rectum wall and too close to the rectal cancer they might just take out the cancer along with cleaning out the abscess right now instead of having my cancer surgery after my thirty treatments of chemo/radiation. The tumor is around the entire rectum and is between 8-12 cm large and is 10 cm from my anus.

If they do the cancer surgery on Wed or Thurs when they clean out the abscess, will my chances of a cure still be as good as if I were to have surgery after chemo/radiation?

The PET and CT scan showed two lymph nodes next to the abscess that they think is infected with the e-coli too, but they don't know if they have cancer in them. They are 1.5 mm each. It it might be 1.5 cm each. I don't remember.

I am meeting with the surgeon on Wed. after my ultrasound/colonoscopy. I have to have the ultrasound/colonoscopy so that I will be able to do the clinical trials I opted for. But I can't be in the trials if they do the surgery before the chemo/radiation.

Does anyone have any experience with surgery first? How long have they been doing chemo/radiation before surgery? I know the pre chemo/radiation is a newer approach.

I wish I could get all this over with as it seems each time I go to the doctor, they find something else that holds treatment back. I will be glad to get rid of that abscess though as it is the only thing that really bothers me regarding pain. It isn't as painful as it is sore.

I thought the soreness was my old tailbone injury coming back or a new pain from my spinal stenosis or fibromyalgia. I had no idea for the last several months that I've been having an abscess. But then I didn't know for the last three years I've had rectal cancer. I should have know something was wrong with all the night sweats during the winter and when I kept the air conditioning on and didn't use blankets when the temp. outside was only 20 F. I've had on and off again temps of 100.9 F, but didn't think anything of it other than I thought my thyroid meds were off some. Even my doctor thought it was my thyroid.

It's odd that we make excuses for our little aches and pains instead of finding out what is really wrong.

Oh, they have staged the cancer right now as IIB. But that could change when they do surgery to take out the cancer and lymph nodes.

Thanks,
Milliesmom[/i]

brainman

milliesmom, I am not sure about the statistics but a lot of people have surgery first followed by chemotherapy and/or radiation therapy. It really pretty much depends on what the objective of the chemo/radiation is. If it is to kill off some of the cancer to make the surgery easier, then logically the chemo would come first. It it is to kill any cancer cells that might have escaped the surgery, then the chemo would come after. Some times it is done both before and after surgery.

I am glad that the place outside of the rectum was just an abscess. If it were cancer, that would probably changed the stage.

You are still in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

milliesmom · Regular Joined: 18 Mar 2008 Posts: 33

Thanks so much. My behind feels better since the antibiotics. I've been in some pain for over a year and this medicine has made me feel better with just two doses. I could even sweep the floor and bend over today without pain. I had forgotten what that was like.

My insurance wouldn't pay for the second antibiotic, so if my doctor will not change the Rx, then I guess I will pay cash. For something this important, I don't want to take a chance on a less reliable pill.

Since I'm feeling so much better, I'm hoping that they will not have to do surgery to clean the abscess. Maybe they can let me take the pills for a few days and then recheck with a CT and see if it has gone away.

When they did a culture it was sensitive to several drugs.

Thanks again,
Milliesmom

DulcimerGal · Regular Joined: 01 Apr 2008 Posts: 36 Location: Virginia

Good luck with this Milliesmom - I hope they choose the right course of action for you. I too am glad for you that part of the problem is an abscess and not all cancer. I am not knowledgable enough to know whether surgery on the abscess is a good idea or not. However - e coli is nothing to mess with, and I would suspect they might be worried the abscess would burst and flood your body with the bug.

Years ago I got sick with kidney problems, they finally decided on surgery to do a reconstruction and only found out when they opened me up that I had also got a huge abscess, they cleaned that out and then did the reconstruction - and that was 25 years ago - and I have been really fine since that time.

Until I was diagnosed with the big C of course. If you are only stage 2 then you should be fine with surgery first and then chemo. I felt better finally today after finishing radiation and chemo last week. It's been one week since that last treatment and I went back to work today for five hours, it was great - tho I am really tired now and heading to bed early!

I hope your surgery goes well this week.
Keep us posted

DulcimerGal
_________________
Rectal Cancer diagnosed Valentines Day 2008
Finished 6 weeks of radiation and chemo 4/23/08
Surgery planned for June
6 months Chemo to follow

milliesmom · Regular Joined: 18 Mar 2008 Posts: 33

Hi all,
I finally got to see the second opinion surgeon today and he explained what my abscess is. No one had told me this before today.

The second mass is cancer, but the inside center died and then got infected. That is what they called "the abscess". Yuck. I hate to think that something inside me died, but the antibiotics are working.

They all decided today for me to do FOLFOX. The surgeon didn't like that idea because of the chance of neuropathy, but they are putting me on "cycles".

I start Monday and get infused and keep a pump on until Wed. Then I have the rest of that week off and the whole following week. Then I start the process again for four cycles. I don't know if this is the norm or if this is just because they are doing a smaller dosage while they are watching the infection and keeping me on antibiotics.

The surgeon said that if the infection gets the best of me they will stop chemo and do the surgery.

After four cycles and if the infection is under control then I have four weeks of whole weeks of FOLFOX and radiation. Then surgery.

I don't know if others are doing the same or not. They didn't stage it differently because the said the tumor is localized even if it is outside the rectum. I had three panic attacks when a trials researcher told me that it had become metastatic when in fact the doctor told me today that it had not.

I was also told that they had to take everything out with my surgery. Even my anus. My first surgeon told me he might be able to save my anus. My tumor is 10cm above the anus, but I do have it outside my rectum so I guess that is why they keep telling me that I have to have a permanent colostomy.

I might look for a doctor in WI even though I live in the greater Seattle area. I've read on the WI doctor's web site that they try to only do a temp. colostomy.

I don't know anything about the colostomy. I can't wrap my mind around it. It's bad enough, then with the anus being gone too really puts me in a spin.

So today they told me that I can beat this and that they fully believe that I will live out my regular life span, I'm 52, so I guess I shouldn't look a gift horse in the mouth and be grateful that I can keep my life.

I am very grateful, but it is an adjustment getting your mind around all this without going into a panic. I have PTSD and it is very hard not to panic.

I have done deep breathing in the past and my hiatal hernia and my diverticular disease went away with the deep breathing alone, so I've been doing that just to stop the panic attacks. Hopefully it will help cure the cancer too.

My brother called today and reminded me that his using guided imagery, (he shoots targets and shot his cancer as a target) and with prayer, he is free from cancer today from esophageal cancer. His surgeon is the same one I saw today. I hope it means good luck for me.

So thank you everyone who read and those who replied. I know we are all going through this and the support is very helpful.

I re-read what I wrote and I really sound ungrateful and want to apologize to anyone that it might offend. I don't feel that way, I feel blessed that it isn't as bad as it could have been. I just have to keep my eye on the prize and live day by day getting through all this.

One thing I was told about the FOLFOX is that the neuropathy can be permanent. The doctor said that this cannot happen permanently if they catch it in time and stop the part of the treatment that causes neuropathy. Is this true? I just want to make sure so I don't make a mistake with my chemo.

Thanks,
Milliesmom

kalamity · New User Joined: 02 Mar 2008 Posts: 3

Hi,

I went thru 6 months of chemo, surgery to remove rectom and have a permanent colostomy. No problems at all with chemo (at the time) I never got ill nor did I lose my hair, energy level remained high. However I did get hit really hard with neuropathy---started only in fingers and toes. it has now spread up above my knees. I tingle and feel like I am walking on sand, lots of throbing pain. They have tried both Neurontin and Lyrica---neither helped me. It is doable and I am learning to live with it. I am told that the nerves will regenerate at the rate of 1mm per month---I will long be dead by the time it does that. one mm is very tiny. I am starting acupuncture this week to see if that will help---if it doesen't I can live with this. But do ask lots of questions about the neuropathy before you begin your treatment.
I answered your other post about colostomy and gave you a really neat website. It is strictly for folks with colostomy. C3Life.com check it out

Wishing you all the best,
_________________
Keep on looking for the good

milliesmom · Regular Joined: 18 Mar 2008 Posts: 33

A fews questins if you don't mind.

When you were taking the chemo, did you have any of the neuropathy? Did it start all at once when you stopped, or did you notice a little bit each time you did chemo?

The reason I'm asking is that my doctor's PA came into the room yesterday and demanded that I take FOLFOX. I told her it was my decision but she maintained that FOLFOX was what I was getting and nothing else.

I had to put her in her place, but when the doctor came in the room, she was pretty much set on me getting FOLFOX and nothing else. She tried to tell me that permanent neuropathy doesn't happen all at once, that it only happens when you don't stop it in time, if and when you start getting neuropathy. She said that any I might have would go away within a day or two.

I have to tell you I was put off by the attitude of the PA and somewhat of the doctor. I'm beginning to wonder if I should just tell them I will not take it.

I want the best results but I have some neuropathy now and do not want any more. It took five years for my to get some of my feeling back in my hand after an injury from a car accident.

Thanks,
Milliesmom

DulcimerGal · Regular Joined: 01 Apr 2008 Posts: 36 Location: Virginia

Hi again Milliesmom,

I am glad we are all talking about this. DOn't worry about sounding negative, we are all dealing with this stuff together and I think it really helps to hear how others feel emotionally as well as physically.

I am somewhat surprised to hear that they have already decided to take your anus and give you a permanent colostomy. I went back to read your first post and it says your tumour is 8-12 cm and 10 cm from your anus. My tumour is 4cm and very close to my sphincter muscle and anus, but I found a colorectal specialist who assures me he is going to do everything he can to save my rectum. He says he only needs 1-2cm of a clean edge from the sphincter to do a successful resection. I already know that this tumour has gone through the rectal wall and they will be taking surrounding tissue and lymph nodes.

Are your doctors specialists or general cancer surgeons? Have you had second opinions? Just want to be sure for you.

I was very worried at first when my doc said he may be able to save my anus, I was sort of in the mind frame of "Take the whole lot out right away to be sure it never comes back" - but now after living with this for the last two months and reading and hearing the options, I am glad my Doc will try to do everything he can to keep my plumbing.

I am so hoping the radiation shrunk the tumour. I go for the dreaded DRE next week - so should find out something then.

Are you still in the hospital? I guess I am getting a bit confused - are they doing the chemo before the surgery? In one of your posts it sounded like they were going to go right in and do the abscess and tumour surgery right away.

Hang in there Milliesmom - we have to FIGHT HARD and search out our options so we can ask good questions of our doctors and their support people. More and more I find that they are never as good an advocate for us as we are for ourselves. They are just all so busy. I am staggered by the number of people I see when I go down for treatments.

Keep posting, I enjoy your comments - and thanks too to Kalamity for giving us the scoop on colostomies - I may end up there too!

DulcimerGal
_________________
Rectal Cancer diagnosed Valentines Day 2008
Finished 6 weeks of radiation and chemo 4/23/08
Surgery planned for June
6 months Chemo to follow

kalamity · New User Joined: 02 Mar 2008 Posts: 3

Hi,
Toward the end of my treatment my hands and feet would tingle, then it would go away when they stopped---two weeks later when chemo started again--again I would get the neuropathy. finally they stoped and I was fine for about 6 weeks and then it hit big time---and it is miserable and again doable. When i asked why i got it so late and bad--I was told that since I was in excellent health and all my blood work was always good they felt they could give me more! I think they took me right to the edge, held me by the shirttails and tipped me over. But my cancer is gone and I am happy for that. I do believe that we have to really do our research and be our own advocate.

As far as having the anus, rectum removed---I was told by three different specialist that that was the best way to go for me. They said they would try to leave as much as was possible so i wouldn't have to have a colostomy---but I was told that the chances were not good and that if they did avoid it and hook me up that I would have no control over bowel movements, would go many. many times a day, would have to wear depends, etc, etc. A gal I met in the hospital was having surgery the same day and we became friends. Turned out she lives very close to me. She opted to not have the colostomy and has regretted it every day since. She can't go anywhere without having several bowel movements and they come without warning. she is currently waiting to go back into surgery and have the colostomy! Who knows? I personally hate the bag but do feel in my heart that I had no other choice and that I made the correct decision for me.
If I had it to do all over again I would research everything I could about neuropathy---it is a real bitch!
Good luck to you and I hope I have not influenced you one way or the other. My cancer was stage 3, and I had 8 lymph nodes also removed. I feel fantastic and I have been cancer free for one year and three months---and i am so grateful that the technology is here today--I know that if I had this 10 years ago I probably wouldn't be here.
I will send lots of prayers to you Millesmom and lots of positive thoughts
Kalamity
_________________
Keep on looking for the good

milliesmom · Regular Joined: 18 Mar 2008 Posts: 33

Hi,
I want to thank you all so much for being such a blessing to me. I appreciate it so much. I've been told many times that the patients themselves know almost as much as the doctor's. Or I should say they know how the disease affects them more than the doctor's.

I appreciate your honesty in regard to the neuropathy. Does your doctor say that it can be reversed? I have neuropathy now and it has taken me almost twenty years to get used to it. It has gotten better since the nerve that was ripped has healed, but I still have some loss of sensation in my hands and feet. It was from a car accident and diabetes.

I spoke with the doctor and she said if I were to try it, I could stop at any time if I felt that the effects were harming me. She said it was the accumulated dosage that was the problem as it seems to be with you Kalamity.

I asked her what my first dose would be and she said 120, of whatever units they use. I read that the lifetime dosage was 800. Is that true or have I read so much that I'm not sure what I am reading? I am overweight by about eighty pounds, (but wear a size 16-18, so don't look like it, I'm dense) so they are dosing it on my weight.

I'm still undecided. When I read about the half life and how long this drug takes to leave your body, I feel one way, then I think that my husband and children want me to stay alive, then I think another way.

I'm am praying that my mind/body connection is strong enough to help me heal. I healed my diverticulitis and my hiatial hernia with my deep breathing exercises. They just went away when I was scoped the second time. So I know the mind/body connection works.

Thanks for helping me out. My doctor changed my first chemo from Monday to Wed. of next week because I'm having to prep for my ultrasound on Monday and she thought it would be too much for me. I agree.

I might have more questions. I will also pray for all of you. I still feel ashamed of myself for complaining when I have a chance for a cure, where there are all kinds of people on this forum who have no chance.

Milliesmom

brainman

It sounds like we are forming our on little colostomy support group Smile

. In fact, on the new forum, I will make this as its own forum.

Best wishes to each of you.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

milliesmom · Regular Joined: 18 Mar 2008 Posts: 33

There is going to be a new forum?

Milliesmom

brainman

We hope so milliesmom. You can post your suggestions at http://cancerforums.net/viewforum.php?f=33
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

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