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A Bit Frustrated

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

I’m a bit frustrated with the way things went at my onc appointment. There is good news and not so good news and I’m just kind of out of sorts while still processing it.

Good news, all my counts are good, my oxy side effects are gone, and we made sure that I get pre-meds and a much slower infusion next time.

The other … well, it’s new news but, not new news so here is an explanation:

When diagnosed before surgery, with just scans etc, I was told, you are most likely a stage 4 but, we will know better after surgery, Why a 4? Well, I had the obvious large colon tumor, suspicious lymph nodes, and 2 suspicious spots, one on my lower spine and one on my pelvic bone but, nothing showing on liver or lungs.

After surgery and after the pathology report came back I was told by the surgeon that I was a stage 2 because there was nothing found in the 18 removed lymph nodes. Sounded good to me after all he was the one in there looking around at everything.

However, after surgery but still in the hospital the oncologist said that after reading the surgical report on the nature of the tumor, where it and how it had advanced, spots on the bones and where the now suspicious lymph nodes (not removed and showing after surgery) were located, she said they were considered borderline distant lymph nodes, she would stage me a 4. Got that?

First onc visit (not my current onc) I was told I was a stage 2 because there was nothing in the lymph nodes that were removed therefore, the spots couldn’t be mets because they weren't in the liver or the lungs and the lymph nodes could be anything and he said that his radiologist considered the spinal spot to be degenerative disease. He said that the pelvic spot could be anything and probably was just something on the film. I could do or not do chemo, it was up to me.

My current onc, on my first visit said that he wanted to treat me as a stage 3 because of the lymph nodes and the rate that my CEA was raising. But, now changed his mind as he said that after the whole team took a look at the big picture (and he pretty much repeated what the onc said to me in the hospital) they are treating me as a stage 4.

I didn’t think it was really bothering me until I posted on another site in response to someone else’s question about their stage 2 situation and realized that I kind of typed more about it than I meant to. So, I’m re-visiting it and a little off center about it right now.

So somehow, I've made it from a 2 to a 4 with nothing really changing except my CEA going up. What the hell am I? Do I really need a number? Do I get to pick the number I like best? Do I just pick a 3 because it's a compromise and in the middle? Whose number really counts? Will it really make a difference? I know that it makes a difference in someone’s numbers somewhere but, I mean will it make a difference to me?

dmdwins
Posts: 453
Joined: Aug 2008

I am sorry Lori....this whole cancer thing can be such a roller coaster and our mind can drive us so crazy....here is just my opinion.....I know that no one wants to be a Stage 4 (I am one of them)however the benefit that I see if they classify you as such, is that you get to get the "big guns" of chemo. Now I know that might not sound like an advantage but even my surgeon had told me that being a 4 and being able to add Avastin to the treatment was a blessing in his eyes...so that was how I tried to look at it.

Smiles,
Dawn

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

lymph nodes, liver pelvis or any other part is not affected isn't?
Cheer up !

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

No liver, no lungs. Lymph nodes, CEA up more again and bone spots.

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

You say there are only suspects isn't ?

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

Cost is a bit of a problem right now as I'm uninsured and cancer eats up your bank account!

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

thats why l would have a pet to confirm about lymph nodes unfortunately even been just one node if is a distant one and not local is considered as a met!So the treatment can be different, as you know in my case radio! So speak to your onc about how he is so sure that nodes are affected and in positive case if he is going to change the plan!.
Best and hugs dear.
Cheer up, by the way no more blue gap on my avatar! LOL.

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

I love that avatar picture. It's so nice to see you and Tote.

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

dear!

okthen's picture
okthen
Posts: 232
Joined: Jun 2010

So sorry Lori! I feel your frustration, wish I had some magic words to take it away.

With Jack I held on to "Carcinoma in situ" with all fours,vomited when he was bumped to Stage 3, and almost had a stroke waiting on his last CT results, fearing we would move on up to Stage 4.

You just want to KNOW, sounds like a reasonable request to me.

I agree that we can't get wrapped up in numbers, but if you're anything like me I just need to KNOW whats what to start with, process that, then move forward.

I find it hard also when the medical pro's that we hand our life to, don't agree, or give mixed signals. I just want us all to get along and play nice...the problem is we're not all at the same play date at the same time...(o:
Keep up your good fight...next I want to see a humorous post regarding this sit-e-ation.
Sending you HUGS and Support!
Chriss

mom_2_3
Posts: 965
Joined: Nov 2008

I think the difference that it will make is whether you will be able to have Avastin as part of your treatment or not. If you have identifiable lymph nodes why not go after them with guns blazing? I guess I would rather be treated more aggressively if I was borderline.

AnneCan
Posts: 3692
Joined: Oct 2009

So sorry for this confusion. I try not to focus on my stage, maybe I am in denial but I find if I think about stages too much it is depressing. The important thing to me is to be treated appropriately, and not be put in a "box".

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

I guess I'm a stage 5!!!!!

I know that it DOES seem that no one knows for sure, but, really, they have your best survival interest at heart....

I was under the impression that stage II can also need chemo/rads...based on the type and size of the tumor...I was initially staged a II, and has pre-operative chemo/rads to shrink the size before attempting to remove it. By the time the surgery happened, the chemo/rads had done such a good job, that the surgeon could not find any evidence left of the tumor at all.....so, surgically, I was staged a 0....lol!

I can't advise you as to your choice, but I never regretted the rads...turns out, my type of colon cancer is VERY responsive to chemo/rads...

Hugs, Kathi

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

I don't want to use your system. That makes me Stage II cervical + Stage IV colon = Stage VI. Not going there....

LOUSWIFT
Posts: 372
Joined: Aug 2006

My understanding with my many years experience with my cancer is that even most stage 2's get recommended for chemo to the same level as stage 3's (all levels of stage 3's). I am a stage 3c this time but have been a stage 3b last time. Regardless, we all generally get the standard chemo usually Folfox or Xeloda. Now a lot of stage 4's do get some additional chemo depending on several factors. My point is considering that they treat stage 2's and stage 3's pretty much the same this is why your in the Folfox Club. Wouldn't they if they think there a possible areas of concern that the onc would order a pet scan and maybe consider adding some radiation or more drugs if something is found? You know they will order a pet scan when the chemo is done to verify you are NED and you will be NED!!! I am not going through this crap chemo with you for either of us to fail. Sometimes doctors can't get their acts together so they are no help and rarely supportive. But that is why we are here- support;knowledge;experience. I know your scared so is everybody here and no matter what stage... You got this! Hugs Lou Folfox Club

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

Like you said about the treatment being the same whether 2 or 3, We're figuring that I'll do the FOLFOX anyway so it's not that big a deal right now and revisit of the other issues during and after to see what next. I think that my CEA numbers have them the most upset. The 1st number is pre-surgical, the 2nd is post-surgical. The last jump that was only 9 days in-between draws is why the team got involved. They re-did my CEA again yesterday but,it will be an after chemo draw so who knows what that will really tell. I don't have that one back, will get it on Monday when I go in for chemo. Here's what my CEA has done pre-chemo:

05/14/10       9.7
05/22/10       2.3
08/11/10       4.6
09/15/10       5.6
10/13/10       6.8
10/22/10       8.3

Here's to hoping the FOLFOX does the trick and that's all I need to do.

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

It is frustrating when they just can't tell for sure. I had the same situation. There was a spot on my liver and two upper abdominal lymph nodes that lit up on a PET post surgery. They couldn't be sure if those were cancer, or just surgery trauma since I was only two weeks out from surgery. My onc choose to go with surgery trauma and treat me as Stage IIIc.

In hindsight, I wish I'd been staged IV from the start. Because that is what I was. Instead, when FOLFOX was doing its job and I had clear PETs in December and May, with my CEA staying down at 2 from December forward, I was considered NED. My oncologist told me to go ahead and get my port out. But then at my very first 3 month CEA check - it was up. Yep, Stage IV due to 3 lymph nodes in upper abdomen (para aortic).

Now you might wonder why I would have wanted to be staged at IV initially. It is because I would have had Avastin added to my treatment. And possibly instead of FOLFOX, I would have done FOLFIRI. I am responding very quickly to the FOLFIRI w/Avastin. Instead of my CEA rising for a while and then coming down, it immediately started dropping.

When you are staged at IV, you are eligible for trials and drugs not used for lower staging. While I would have loved to truly only be a Stage II or III, with a questionable situation, I think you are better off if they go ahead and bump you up, making you eligible for more options for treatment. So I'd actually encourage your oncologist to officially stage you at IV.

LivinginNH's picture
LivinginNH
Posts: 1458
Joined: Apr 2010

Hi Lori,

I wish that I could just give you big hug right now. I can't imagine how hard this is for you. But maybe I can help you in regard to the insurance problem for the PetCT. When we had first found out about the colon cancer, we weren't sure if the insurance would cover some of the costs, but the surgeon told us not to worry - the hospital has funds put aside for these types of life saving tests just in case the patient doesn't have insurance. Therefore, I would recommend talking to the doctor about this and also to the Patient Financial Assistance Rep. at the hospital to see if they can help you out. In fact, another local hospital wiped out a $5k CT scan bill when Rick was diagnosed with colon cancer since he was out of work. So, please, look into it...it could save your life! Take care,and best wishes always, Cynthia

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

I really appreciate the input. I think it bothered me more than it might have because I'm just so tired and it was a such chore just to get out and spend the day at the oncs. That darn chemo is an absolute 5 on the F***U scale (hahaha ... 5FU get it?)     :)

Cynthia, thanks for that suggestion. I will definitely check into it. I think the onc was planning on waiting until after FOLFOX for a PET and was just going to do CTs and CEA during chemo. I'll bring it up next time I see him. I'm sure if anything changes that he will want the PET sooner and it's good to know that I might be able to work with the hospital on it.

Kathryn, thanks for that insight in the difference in treatment for you.

Again, everyone thanks for your words. It's good to have you on my side when I'm feeling this way. Feel the love!

Annabelle41415's picture
Annabelle41415
Posts: 6548
Joined: Feb 2009

Don't have an answer for you. Just has to be hard going from 2 to 4 and seems like no one can decide what you are and how they want to treat it. Prayers are with you.

Kim

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

I never want to look back and wish I had done something I haven't......Stage 5 is what you don't want...So, do whatever it takes as long as thats what you want.....Even if Folfox doesn't get it all, it will still kick most of its butt...I say the less indians you have surrounding the wagon the better off the wagon will end up....do whats necessary to satisfy yourself that you have done all you can to stop it....and then you'll be ok.....Love to ya Lori....Clift

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

I'm just hoping the FOLFOX kicks cancer's butt because it sure is kicking my butt. :)

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

Kim, I really appreciate your prayers

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

Hi Lori,

Yes the number and what stage you are can be a frustration. I guess it may be up in the air until/unless they know what the suspicious spots on your bones are. I don't know if they do bone biopsies or not, since I don't have experience w/ bone mets.
When I was diagnosed I was initially told I was a stage 2b (tumor had grown through bowel wall, but no lymph nodes were invol ed). In fact, no lymph nodes ever showed up as affected on a CT or a PET/CT scan in me anywhere until about a year and a half after my dx. But, just a week after my dx on a "routine" CT scan, multiple nodules showed up in both lungs and in my liver. So, I obviously was a stage IV, but they said I bypassed stage III (which is when it's in the lymph nodes). I was actually told they thought mine could have spread directly through my blood, bypassing the lymph system. Very weird- that's me, though- always have to do things the unusual way.It was about a year and a half later on a PET/CT scan that a hilar lymph node in my lungs was lighting and growing.
I guess I wouldn't focus so much on whether it's stage III or IV now, but I know it's not easy not knowing.

You take care and you are in my prayers,
Lisa

cwork's picture
cwork
Posts: 37
Joined: Oct 2010

Hi Lori, I have thought about this alot since reading it, trying to think how I would feel. I think perhaps the thing that would bother me the most is the mental aspect of a change in my staging. I mean, what is going on inside of your body today is essentially the same as yesterday, so why does the number placed after the word "stage" affect you so much? I think if it were me I would have been clinging to that stage II label and in the back of my mind used that as encouragment to myself by saying "Well, at least I am not stage III or stage IV." Now by changing your stage the doc has taken from you that little source of comfort (for lack of a better word.) Perhaps it is more of a mental set back in that you have to re-evaluate the way in which you view your illness and your ability to cope with it. It also seems to me that sometimes stageing can be subjective in that what one doc may call one stage, another may place up or down from that. I totally understand how this news is disturbing to you, but hope you can mentally accept that it appears to be a number change more than a condition change. I don't know if this helps at all, or is totally off base. I really have thought about this since reading a couple of days ago and been concerned for you as I would hate for something like this to in any any way dim the bright light you are to me and so many others.

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

Thank you Cindy, I can tell that you really took some time with your post. No worries, I’m pretty tough to keep down. I've pretty much taken the attitude that you've described. Only difference is the climbing CEA which obviously means something is going on. I keep a spreadsheet and chart on my numbers (ha! anal) so I see it in 3D. But, the "worrisome" (never used that word before the radiologist and doctor started using it) spots and lymph nodes haven't changed in 5 months so that is a good thing, I think. Again, thanks for your input and thoughtfulness.

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