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Visited the surgeon today...

Patrusha
Posts: 488
Joined: Jun 2006

... and came away with a gaping open wound packed with gauze. Yippy!! You mean all that complaining I did over the weekend to the on-call surgery team was justified? Would have been nice when I was telling them of the swelling, the redness, the night fevers, the leakage, etc., that they would have told me to come on in. But, no, they told me to "keep in touch" if anything changes.

HELLO????!!!!

Oh, yeah, the urine analysis confirmed a urinary tract infection, too.

I just asked my surgeon why do they give you a list of things to watch for and call on if they don't intend to do anything? I probably should have been opened up three days ago...

Grumble.

Okay, other than Mt. Saint Helens erupting in a disgusting display when the surgeon squeezed it, I finally got my TNM rating: T3 N0 MX. Translate: big tumor, nothing in the 14 tested lymph nodes and we haven't checked for metasteses so we aren't going to say if it has or hasn't spread.

Stage II.

They are making an appointment with the oncologist because of my "young" age of 49 (I LOVE that!). But all I can find out there on the net is that most chemo regimens for Stage II with my TMN results in only a 2% or less greater survival rate.

I don't think I can put myself through that without a better rate of return.

And I am wondering...can't they do full body scans to look for metasteses before I make a chemo decision? The MRI of the liver was clear. My chest scans and Xrays looked ordinary. Do I need a brain scan and bone scan?

Any thoughts out there? I appreciate all of your feedback.

kerry's picture
kerry
Posts: 1317
Joined: Jan 2003

So sorry you have had to go through all that. Yes, it is yucky when the docs say to call and you do, and then you get "well keep in touch". Ouch! I would do a little one on one conversation with my doc....just ask Stacy about talking to docs!!

Glad you have come back Stage 11. That is good news - I did have a bone scan right after diagnosis - maybe that would be a good idea. CRC rarely goes to the brain - my husband might disagree with that comment though! Ha! I keep telling him it is just "chemo brain" - not "cancer brain".

I am of the opinion that I would do some chemo to make sure any microscopic cells are zapped. Others will have their opinions as well. Bottom line is that you do what you are comfortable with and the decision you can live with.

My best to you. I love reading your posts. Even when things seem dark, you bring a bright light.

Wishing you a speedy recovery.

Kerry

P.S. Have you done your web page yet??

Patrusha
Posts: 488
Joined: Jun 2006

Thanks, Kerry! I did talk to my surgeon and asked her to search out the doctors that I talked to on the weekend and let them now how it all turned out. She was not happy I was put on hold like that.

Did your oncologist arrange the bone scan?

And, no, I haven't done my web page yet. Soon.... too busy doing research right now! LOL!!!

vinny3's picture
vinny3
Posts: 933
Joined: Jun 2006

Glad to hear that the one problem is being solved. You are exactly right, they give you a list of problems to watch for and then don't do anything about it. I can't defend the profession for that. My experience is that one needs to keep yelling until something is done.

As far as the chemo goes that is a tough decision. The left side of the colon has a higher rate of recurrance than the right. I'm not sure about that 2%. There is a study that shows that chemo with Folfox has about a 5% better rate than another chemo routine but I believe that chemo, even with the former routine 5-FU has about a 30% better rate than no chemo. However I will try to find the study, I've copied many articles so have to do some sifting. After I read these I wondered why my oncologist didn't recommend chemo after my first surgery ( a local excision after chemoradiation) but I think that they, and I, thought I was "cured".
Dick

Patrusha
Posts: 488
Joined: Jun 2006

Hey, Dick, whatever studies you can throw my way I would love to read.... it's interesting that the left side cancer (mine!) reocurr more often. That might be a point in the Pro-Chemo column.

KathiM's picture
KathiM
Posts: 7864
Joined: Aug 2005

And that, folks, is why I am NOT a physician..... well....cool, that you have an answer..and yes, it WOULD have been better to get it over the weekend....sigh
BUT HAPPY DANCE< HAPPY DANCE!!!!!
I was stage III....no post surgery chemo....
BUT I was squamous cell...so it's a little different.
Hugs for the great news...you WILL be better now!!!
Kathi

Patrusha
Posts: 488
Joined: Jun 2006

Yeah, Kathi, you're special cuz you're a "squamie." LOL!!! Me? I'm just a little old run-of-the-mill "adeno"! I'm dancing with you, girlfriend!

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

Hey there! Congrats on your pathology results! If I were you I would request a CT scan (chest/abdomen/pelvis) and blood work, including CEA. If all of those come back OK, then I would just go on down the road and chalk this up to a "bump" in the proverbial road. I don't think chemo is normally recommended when there is no lymph node involvement and the above stated tests will confirm that there are no mets.....
I would not do chemo unless I absolutely had no other choice. I have been through it two times and I would not recommend it, I agree with your first statement.
Just my opinion,
Take care, Susan.

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

I wish there was a way to edit these posts after they are up? If there is, please let me know. I just wanted to say that a full body scan IMO would be unnecessary as I think CC takes a fairly predictable path from the lymph nodes to the liver, so I think (not 100% positive, mind you) that if your liver is good then you don't need to worry about other very remote locations being affected. I don't know of anyone who has had distant mets without ever having liver or lung mets first. Please let me know if any of you have and I will stand corrected.
-Susan.

Patrusha
Posts: 488
Joined: Jun 2006

I wanna know where the edit button is, too, Susan. I replied to you and it ended up below under Kangatoo's response. So I'll post to Kangatoo here and really confuse everyone!

Kanga, are you going through a teaching/research hospital? See my problem is that the University of Michigan is just such an animal and they'll recommend all kinds of things just because you fit some criteria for a study they're hosting. I am just not sure whether to trust them or recommend what is best for ME or whether they see me as a valid "specimen" for a study.

KFalvey
Posts: 117
Joined: Mar 2005

Hey Susan,
Yes you can have mets to other locations before liver or lungs. I did and mine was right colon. It went to my left ovary and the cul-de-sac between the rectum and vagina.
To Patrusha, if you haven't had a PET scan yet, I'd request one of those. Not all tumors show on cat scans clearly. It should show if you have cancer anywhere else (if tumors are larger than 1 cm). Congratulations on being Stage II and good luck on deciding about chemo. It's a life changing decision that only you can make.
And Scouty, my doctor told me a Cat scan doesn't give you anymore radiation than a flight overseas and many people fly there regularly without problems. Kandy

Patrusha
Posts: 488
Joined: Jun 2006

Kandy,

Someone said a PET scan can cause cancer.... any truth to that? I already had an MRI of the liver, which is how they determined the shadows from the cat scan were cysts, not cancer. Is a PET scan better than an MRI?

kangatoo's picture
kangatoo
Posts: 2115
Joined: Feb 2004

Hiya Patrusha, I was dx'd stage 2 and had my sigmoid and most of the descending colon removed. Here in oz chemo is normally recommended for stage 2 although the ultimate decision is the patients. Both my surgeon and my onc. were quite adamant that they wanted me to do chemo, which I did for 6 months(5fu/leucovorin)
Percentages I know don't really mean much but I was told 3% was the benefit. I wanted to tell you that I have been NED now for 2 years, 5 months. Keep yah spirits up gal. Whether you decide on chemo or not your prospects are very good....that I'm still here and healthy prove that...smile gal!
btw...I asked them if they would scan my brain too, they said no need to.
(I agreed 'cos not much worth scanning...lol!)
Hope you feel a little brighter now, Ross n Jen

Patrusha
Posts: 488
Joined: Jun 2006

Thanks, Ross n Jen (whichever one you are....). You brightened my day!

Patrusha
Posts: 488
Joined: Jun 2006

Dang! I knew I forgot something. I wanted to ask the surgeon if they had measured CEA yet... I see her again in two weeks when I see her.

I already had a CT scan of the chest/abdomen/pelvis as well as Xrays post-surgery of the same.... and they said all looked well. No sign of tumours... An MRI of the liver showed that two spots on the CT scan were cysts. I thought that was pretty good to confirming no mets. My surgeon is pushing for the chemo because I am under 50.

AuthorUnknown
Posts: 1564
Joined: May 2006

Hi Patrusha,

This is horrible doctor's office that had you waiting for them and did nothing. You did the right thing that you told the surgeon. I hope that now that they opened the wound, it will heal.

I hope they put you on an antibiotic for urinary tract infection? Try to drink a lot of water - it will help to clean it out. Fluids is the key.

About chemotherapy: it is a very difficult decision. I had to decide for my mother as I am her conservator. She is 68 years old and has alzheimer's type dimentia. She also had II stage with no lymph nodes affected. The oncologist said that cancer may come back without chemotherapy 40-50% if we don't do it and 30-40% if we do it.

It was so difficult for me to decide what is the best for her. I did not want her to suffer from it but I also was worried that it may come back. I don't know what I would do for myself let alone for somebody else... Finally I decided to give her a chance and try it.

After 1st round (round means 2 weeks) her liver functions were elevated, and she had to stop and wait. CT scan showed a couple millimeters nodules in her liver and lungs which were there before the surgery and appeared to be stable and per oncologist are not concern.
When liver functions normalized, she went on 2nd round and after it liver functions went up again. I was very concerned about her liver. It seemed to me that if this drug would cause liver failure, it is not worth it. They told me that this drug has the side effect of affecting liver. So, I thought about stopping the drug.

And then turned out that she has got severe pneumonia. Per doctor - chemotherapy causes the immune system to fail which caused pneumonia. It was so severe that she almost died from it. She is recovering now from pneumonia but we now watching kidneys because she had kidney values elevated because of low blood pressure at the beginning of pneumonia. They said it was renal failure. It could also be from chemotherapy.

Of course, I now have decided - no more chemotherapy. It is not worth it, it kills cancer cells and at the same time it can kill too.

She was on the oral pill Xeloda. Many people here go through it and even though it is very difficult on them as far as side effects are concerned, they were not under the threat of dying like my mother was. However, there is a chance like in the case of my mother.

You may want to look into alternative methods, like alkaline diet, juicing, acupuncture, massage, etc.

There is Emily (2bhealed) on this board who was diagnosed III stage with lymphs affected and refused the chemotherapy and did alternative methods only. She is 4 years NED.

So, I think that you are right that you are looking for survival rate.

They should do scans to check for metastasis. If they don't do it, you should fight for it.

Best wishes and God Bless.
Eleonora

Patrusha
Posts: 488
Joined: Jun 2006

Hi Eleonora!

My doctor's office isn't the culprit here. It was the on-call surgery clinic at the hospital who kept putting me off over the weekend. The surgeon said she was going to look up the doctors who took my call(s) and ream them a new one.

Yes, they put me on an antibiotic for the UTI and it helped cover the open wound, too. The UTI cleared up right away. Wound is coming along.

As for your situation with your mom, I can't imagine having to make these kinds of decisions for anyone else (can hardly make them for myself!). As if the Alzheimer's isn't enough... you are my hero. My parents took care of two different parents (my paternal grandmother and maternal grandfather) and they lived with us until they died. My grandfather was senile (perhaps Alzheimers) so I know what a lot of energy it takes to care for someone with diminished capacity. I grew up with it. Again, you are my hero!

Be strong. Hang in there for mom.

scouty's picture
scouty
Posts: 1973
Joined: Apr 2004

So you still have the ole instant menopause symptoms to go thru (ugh) I loved reading that you nailed everything about your situation and am pissed the "help line" didn't help.

Hey Dick, how many times should you have to call and scream to get assistance when you know something is wrong...... until you die?????????? How can you say you are defending that kind of treatment????? It is not right and people should be reprimanded/trained for whatever their problem was for not listening to her and her symptoms.

Yes, they can do full body scans (CT/PET)to see if there are any mets but that does involve a serious dose of radiation that does cause cancer. How ironic is that!!!!!!!!!

I don't want to scare you but I was 49 at my dx 2 1/2 years ago, and had to change doctors(after a second opinion recommended by my brother, who is an ENT surgeon) to find out that mine had spread and I was stage 4. I chose to go to a comprehensive cancer clinic (there are over 100 in the US) because I had several within an hours drive of me (I am lucky). Their CT machines were better and found the mets after my ex doctor/hospital missed them with their "second rate" machines for 4 months.

As far as chemo, if it isn't necessary or gives less then a 5% better chance of survival I would never even give it a thought. Learn what the stats mean, I would have to ask Dick if his recurrance numbers are for people that did chemo or not (I suspect it is for folks that did chemo, chemo does make you more prone to other cancers down the road). The US medical industry does not keep stats on people that do not follow their drugged regimes.

Continue to do your research and let me know if I can answer any questions you may have. You can check out my personal web page here if you would like to learn more about my history. I am currently NED and have not followed the usual medical recommendations and am supposed to be dead by their stats. I am far from that and needless to say, I think all of those stats are bogus and are manipulated for the corporate finacial gains of too many companies. Money rules, not health, healing, or wellness.

Lisa P.

vinny3's picture
vinny3
Posts: 933
Joined: Jun 2006

What I said was that it is not defensible. I don't think one should have to keep yelling to get the treatment they deserve. Unfortunately that seems to be what is required these days.
Dick

Patrusha
Posts: 488
Joined: Jun 2006

Hey, Lisa,

You know I think I was pretty much through menopause anyway cuz the hot flashes I am having are no more severe than before surgery. But I picked up a good menopause book to read, just in case I start foaming at the mouth or something! LOL!!

As for the full body CT scan, they already scanned the chest, abdomen and pelvis, and also did an MRI of the liver. I think the only thing left would be bones, right?

I have looked at the Cancer Treatment Centers of America, the closest of which is in Chicago. What center did you use?

I'm pretty sure the University of Michigan has the best equipment available (they were among the first in the country to do PET scans) but they are also a teaching and research hospital, always on the lookout for patients who can fill a slot in one of their studies. I just don't want to be a guinea pig, ya know?'

I'll check out your web page... thanks....

terril
Posts: 297
Joined: Apr 2004

Patrusha,
I had one of those big ass open wounds packed with gauze, too!!!! It was fairly gross most of the time. I packed it myself so I didn't need home health care to do it. I went of chemo 8 weeks after the surgery; it took the wound 6 months to close. Really keep an eye on it. It didn't heal right, so I ended up with a hernia 14 months later. The doctor said it was nothing I did. By the way, excellent news about the node involvement. My thoughts and prayers to you for a full recovery. Terri

Patrusha
Posts: 488
Joined: Jun 2006

Terri,

You packed your own wound? Wow!!! My beloved husband has taken that duty on. I guess I could do it myself, but, hey, if he's willing.... he he he. Of course, every time he repacks the wound he tells me the story about this guy in Montana who made his own dental tools and filled his own cavities.... I wonder if he's trying to tell me something? LOL!!!

Sounds like you were on chemo at the same time you were trying to heal the wound. No wonder it took 6 months! My wound is small enough that they said two weeks, tops... Over the weekend the wound started closing up considerably. Yeah!!!

Thanks for your prayers! I'll take all I can get and then some!

jerseysue's picture
jerseysue
Posts: 626
Joined: Oct 2005

Stage 4 here with mets to ovaries and uterus. No mets to liver or lung. What part of Michigan are you from? I've been to Ann Arbor but they said they wouldn't do anything different then what my local doc would do so instead of driving 3 hours one way I decided to stay put for treatment that ended back in Nov 05.

Patrusha
Posts: 488
Joined: Jun 2006

Hi jerseysue!

I'm in Ann Arbor, actually. If the mighty U-M (note my sarcasm) said they wouldn't do anything different, then I think you're smart to stay closer to home. They parking structure is under repair and it can take a half hour just to find a place to park!!! Grrrr..... Hope all goes well for you!

lfondots63's picture
lfondots63
Posts: 823
Joined: Jan 2006

Hi,

It sounds like since you are T2 N0 that the tumor was not in the wall. I would say do the alternatives instead of chemo. The reactions are worse then using the alternatives like Scouty and 2bHealed. They both had great results. I have changed my diet because of them. Good Luck and sorry that the docs were so unresponsive. Kind of makes me mad too that you should have been treated sooner. Sounds like you should have gone to the hospital since nobody was listening. I've done that too. HUGS and hope you heal quickly.

Lisa F (not to be confused with Lisa P) LOL

Patrusha
Posts: 488
Joined: Jun 2006

Hi Lisa F,

My tumor was actually T3. Does that mean it is slightly into the wall?

I gotta talk to scouty and 2bHealed. I am really interested in alternatives, especially nutrition.

JADot's picture
JADot
Posts: 720
Joined: Jan 2006

I was a stage II, with 2 tumors, T3N0M0 and T2N0M0. I agonized over whether to have chemo or not. At the end I decided to go for it. 5% is 5% and statistics don't mean much as each individual is different. As you know by now, there are limitations to labs quality, surgeon quality, imaging resolution etc. Who knows where a few cancer cells lurk? So I went with the conventional wisdom. I have my last chemo today! It was bard but not insurmountable.

Best of luck to you!
Ying

Patrusha
Posts: 488
Joined: Jun 2006

Ying,

Same stage and everything (well, actually I don't know for sure about mets, but I am taking the position that I have none for now!).

I'm glad you've had your last chemo. I hope you are back on the road to good health pronto!! At 5% I am not sure what I am going to do yet. It helps to have your input. Thanks!

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