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Shouldn't have looked

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Hey, guys. I might have myself unnecessarily nervous. I got copies of my medical reports from the last year, because I'm seeing a new gastroenterologist in January, and his office requested stuff. For those of you who remember my story, I was diagnosed very quickly and had surgery the same week, so I didn't have time or know enough to request copies of pathology reports and such then.

So last night I was going through all the papers, and the pathology report said that they checked 10 of my lymph nodes (all clean). What I read online is that the standard is to check at least 12 lymph nodes. I was diagnosed Stage 1 and have had a clean colonoscopy in the last year, but that worried me a bit. One report from a ct scan said that my liver and pancreas were a tad enlarged, too, but nothing has been said to me about that.

I am a person who should probably never go near the internet or medical reports, because I always project too much, but still, I do NOT want to be someone who was told it's all honky dorey and then have this thing bite me again.

By the way, if any are interested, I posted an essay in my expressions area on my page, if y'all want to see it. It's what I'm going to close my talk with when I speak at the Relay for Life kickoff in January.

Sorry to be longwinded!

*hugs*
Gail

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

Just remember who is the doctor...I always say "I'm not a doctor, but I wash the underwear of one...does THAT count?"....lol!

(Can you imagine, my beau IS a doctor, and he will NOT give me advice????)

Hugs, Kathi

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Thank you, Kathi.

*hugs*

Gail

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

Stay off the internet..all you need to know is in here.....10 clean nodes mean exactly that ...evidently he saw no reason to go any farther. Don't borrow trouble, celebrate with clean nodes......and take it at face value.....they always check my liver and such to see what type of effects the chemo is doing. that I take it is routine in their off cycle checkup.......God Bless ya.............

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Thank you, Buzzard. You're always so positive.

*Hugs*
Gail

taraHK
Posts: 1961
Joined: Aug 2003

Hi Gail,

I personally wouldn't be concerned about either of those pieces of information (a) although they try to harvest as many lymph nodes as they can, they can't always harvest 12 (they didn't for me). Yours were all clean! Yea! (b) a slightly enlarged liver/pancreas are only that. If it were a big deal, they would have investigated further. They didnt note any lesions or tumors. They have to record everything even slightly out of ordinary -- that's their job.

We all have these dark moments. I refer to them as "3:00am moments" (which is when they tend to strike me). Keep breathing in and out -- and remember my favorite 'mantra' -- feed the faith, starve the fear'.

By the way, I know you are going to knock 'em dead with your talk -- I'm so honoured to have you representing us!

Tara

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Thank you, Tara. Although there might be some on this board who find it difficult to believe, I have been planning my talk in my head, and it's going to be all positive.

*hugs*
Gail

pamness
Posts: 513
Joined: Nov 2007

Most of us here, on the board, do not have a Stage I diagnosis. You do. I have read many of your posts. You have no reason to believe that it was not correct. I agree with the other posts. Why borrow trouble. Stage I is almost always controlled by surgery. All my doctors thought I would be stage I - I had polyp - nothing showed up on my scans. Pathology reports after surgery showed two postive nodes (yes out of 19) - fortunately, they were the two closest ones.

My CEA has bounced around - which means I have to have a scan each time.
They have been clean. I am waiting/worrying by 3 month intervals.

If you trust your doctors, and and some point, you have to, why are you looking for trouble?

I am all in favor of being proactive, but maybe you should try to relax and be glad that you caught your cancer at its earliest stage. It is sometimes difficult to get 12 lymph nodes during surgery. I know the standard it 12.

I hope your new gastroenterologist can make you feel more comfortable.

The best advice I got from my gastroenterolgist, surgeon and internist was stay off the internet = it is not written for you and it is not written about you.

I wish you the best of health and peace of mind.

Pam

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Yeah, I know I was diagnosed Stage 1, but I still reserve the right to say I had cancer, and that it makes me nervous. And I wasn't borrowing trouble. I was reading MY medical report about MY cancer for the first time, and it bothered me a bit. I do trust my primary care doctor to the utmost. He's a personal friend, and I know he has my best interests at heart. That is not to say that I don't trust the other doctors, I just don't know them as well. I'm going to the new gastroenterologist, because he's university based, and this was a recommendation from both my primary care doctor and my local gastroenterologist. I have had ongoing pain for over a year now, causing occasional hospitalizations.

I have resumed my life and am very grateful for still being alive. I don't choose to complain much to my family or friends, so that is why I vent here. I thought that was okay. However, I see that it is apparently not appreciated, since I "only" had a Stage 1 cancer. So I'll just read from now on and not post a single complaint.

Best of luck with all your checkups. I hope you continue to check out fine.

Gail

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

And I know I sound angry, but I'm upset at the implication that I don't deserve to complain, because I had Stage 1. Believe me, I know there are people suffering every day through chemo and radiation, and I haven't had to do that. I'm extremely grateful for that and very sorry for those who have to endure it. Still, the news that you have cancer is something that changes your life forever, and I was hoping this board was a place where I could share with other survivors without being made to feel like I haven't earned my place here. And I believe I have posted many positive comments to others. It really hurts my feelings to made to feel like I don't belong here. Wish I didn't!

Gail

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

Hi Gail,

Just wanted to give you a "hug"! I read all the other posts and, honestly, I didn't interpret them as negatively as you did- hopefully that wasn't what was intended by the people who posted just because you're "only" a stage 1! We all go through feelings of frustration, worries, and fears, whether we're a stage 4 or a stage 1! Knowing myself (I'm a stage 4), I'd still have the same worries and fears even if I were a stage 1. Please don't feel the need to apologize or stop posting!!
I enjoy reading your questions and comments. Take care and may God bless you with peace in 2009 (which is my wish, of course, for everyone on this board!)
Hugs,
Lisa (hope you don't mind me copying your signature style)

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Hi, Lisa.

Thank you for the kind remarks. I appreciate the understanding so much. I really felt fine about most of the posts, but it did sting when I felt I was being chided to remember I was Stage 1. I do! And I thank God for that every day. I really was just hoping someone would say something like, "Yeah, I only had 10 nodes checked, and it was fine." Something like that. It just hit me in the face with a big "C" to read the reports for the first time.

Borrow my hugs anytime!

*Hugs*
Gail

VickiCO's picture
VickiCO
Posts: 934
Joined: Oct 2008

You vent away! Only stage 1, or 2, or 3 - who cares? The beast is still there. I have a dear friend who is stage 4 and just told he has another recurrence in his liver. Not once has he said "you are lucky you are ONLY stage 3". He is supportive and caring and offers advice, as we should all do with each other.

Huge hugs and keep posting Gail. We are behind you. You are a CANCER SURVIVOR!

Vicki...only stage 3

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Thank you Vicki.

That means so much to me.

*hugs*
Gail

Karmar
Posts: 43
Joined: Nov 2008

Gail,

Reading your post-Wow-I dont have cancer at all but am sorry that you felt belittled by others. I agree with one post we are family. My dad was stage 4 but I never thought of stages ever. Cancer is a beast no matter how big or small. And none of us know who will get through it and those who will have a life long battle. I still plan on posting and reading. I truly hope you do to. Keep up the faith. And vent! cnacer or not stage 1 or 4 your still a gift as we all are.God Bless you
Karen

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Thank you, Karen. I hope you are getting checked regularly to make sure you don't get the beast.

Have a Happy New Year.

*hugs*
Gail

chynabear's picture
chynabear
Posts: 483
Joined: Jul 2005

I was young and naive when I was diagnosed and just wanted the cancer out as quickly as possible. I went to the surgeon my the gastro recommended and didn't give it a second thought. My mother-in-law brought up getting a second opinion and I didn't... mainly because I wanted this horrible disease out of me RIGHT NOW and didn't want to waste time shopping for a doctor.

For whatever reason, only 5 nodes were taken out of me. Five. I later thought that this was because I had JUST turned 27, didn't have any risk factors, etc etc etc... I was told that it couldn't be cancer because of this... and it was. Then I was told that even though it was cancer, it couldn't have spread because blah blah blah... well, guess what? it did... at least to the first node closest to my tumor. My tissue looked so good, according to my surgean, that they had to scope me again to see where the cancerous polyp was taken. I didn't know any better in regards to the low number of nodes taken. My oncologist never mentioned that they should have taken more and never gave me any further reason to worry.

I too, tend to look too much into what I read and hear. In fact, I couldn't learn or read ANYTHING regarding cancer because I would get stuck on the probablity and odds and such that I would freak out. I finally just stopped, until I found these boards anyway. I never requested my reports or records until it was time to move and then I read... and I freaked. I asked my oncologist more questions after reading my chart than I did during the whole 3 years I was seeing him. The only true scare I have had since being diagnosed was an apparent "enlarged" lymph node near the surgical site. My oncologist was never worried about it and said it was likely that it was enlarged because of the surgery itself or possibly through normal lymph node functions... but I always wonder if they should have taken more nodes. Too late now, I guess. However, I am over four years out past diagnoses and surgery (where they "got it all") and I am living strong.

BTW... a survivor is a survivor is a survivor.

*HUGS*

Tricia

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tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Thanks so much, Nana B. I like the word family.

*hugs*
Gail

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Hey, Tricia.

I'm sorry they seemed to give short shrift because of age. I'm very glad it's turned out okay for you!

It really does freak you out to read that report for the first time, doesn't it? There it is-size of tumor, where it is, etc. And you think, "That was ME!" Yike, to say the least.

*Hugs*
Gail

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Hey, Tricia.

I'm sorry they seemed to give short shrift because of age. I'm very glad it's turned out okay for you!

It really does freak you out to read that report for the first time, doesn't it? There it is-size of tumor, where it is, etc. And you think, "That was ME!" Yike, to say the least.

*Hugs*
Gail

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Sorry about the double post. Tried to copy and paste it under your remarks properly, but instead ended with a double post. Novice! *L*

*hugs*
Gail

pamness
Posts: 513
Joined: Nov 2007

I knew I would get slammed for my post, but I do wish, for your sake, that you could learn to worry less. (I wish I could learn to worry less). As I said in my post, be proactive - I hope that your new gastroenterologist can make you feel more comfortable. And I pray, that they will never find anything to make you feel scared or anxious.

I know that any cancer diagnosis provokes anxiety. You should feel free to vent, complain here or anywhere else. I just wanted to try to make you feel a little less anxious.

I hope the New Year brings you nothing but good things.

Pam

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Thanks for the clarification, Pam. My new gastro appointment was not made because I worry all the time (which I really don't), but to see if he can help identify what's causing the pain I continue to have. This has occasionally been off the 1-10 chart even with morphine. So it's significant.

I guess it wasn't clear from the way I worded my post that the main question in my mind was, "Aren't they supposed to try to check at least 12 lymph nodes? Should I pursue the whys of that with any of my doctors"? I know that there were some symptoms prior to my diagnosis that I was aware of but put off as being part of my ongoing IBS. So I'm trying to be more aware of things I should/shouldn't discuss with a doctor. I was really hoping when I posted that someone else would say they'd been diagnosed a long time ago and not had 12 nodes checked. Just wanted reassurance that it sometimes happens, and it can be okay.

I honestly don't sit at home worrying all the time. I'm very busily involved in everything that has to do with my 2 (soon to be 3) grandchildren and the rest of my family and my church. I also captain a Relay for Life that I started as soon as I was on my feet after my surgery last year. So I really don't think I'm sitting home and moaning all the time.

I believe you meant well and wanted to help me, but it stung that the first sentence referred to me being a Stage 1 survivor. It made it sound like, "So what are you whining about, lady?"

I hope things are well with you.

*Hugs*
Gail

pamness
Posts: 513
Joined: Nov 2007

I never thought you were just sitting home. I loved your post (I hope I am right about this - about going to your college reunion- or your first trip alone since the diagnosis), unless my memory has totally left me - which is possible - you had a blockage. I did too, wouldn't wish that on anyone. I wasn't aware that you continue to have a huge amount of pain. As they would say these days, "my bad."

I have trouble with stress, and worry that stress causes a decrease in the function of the immune system.

I hope that you find out what is causing the pain. My colon surgeon tried to blame the pain from a partial blockage on a stomach surgery I had 15 years ago. Might have been more effective if the surgeon for the stomach surgery was not his current boss.

Anyway, I hope you get some answers about the pain and continue to enjoy your interests and family.

Pam

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Thanks, Pam.

It's amazing that you remembered that post! It was actually a sorority convention I went to (Beta Sigma Phi, not a college sorority, but a social and service organization).

Yeah, the pain is the pits, but it's sort of like a member of the family now. I'm pretty much getting to the point of accepting that it's just going to be there,and that's that. I really think my IBS just got kicked into high gear by the surgery. There is one part of the medical report that I will ask the new gastroenterologist about, referring to the area right at the incision. We'll see... At any rate, it hasn't stopped me from wrestling with my 20 month old grandson, which is a hoot.

*Hugs*
Gail

polarprincess
Posts: 210
Joined: Aug 2008

Is it possible all they had was 10 nodes to check? Stage 1 is a small cancer, so maybe that is all they got from your surgical specicmen. I am assuming you are thinking they just stopped at 10, right, and that there were probably more to check? Mine was a very small T1 cancer in a polyp, and i would have been stage I except they found cancer in 1 of 26 lymph nodes, with no evidence of extranodal extension, so i ended up stage IIIa, and they took out 8 inches of my rectosigmoid and they told me in that area there are more lymph nodes, so maybe if yours was higher up, there were just simply less nodes. If not,from what i understand they do save your specimens and freeze them, so you could request that they be rechecked if it would put your mind at ease.

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

I don't really know the answer to that. I plan on asking lots of questions at my next appointment! All I can see on the report is that 10 nodes were checked, but it doesn't say out of how many there are in that area. I just reread that section of the report. Of course I noticed something that I hadn't before. It said "lymphatic invasion suspicious." Right under that it said that they had checked 10 nodes, 0 positive. So I don't know if that means that it was suspicious, they checked, everything was okay, or what. I'll ask! I also will ask if the doctor feels there would be any value in rechecking the specimen. I'm not overly worried, but I do hope they checked as many as they needed to, you know?

*Hugs*
Gail

MoonDragon's picture
MoonDragon
Posts: 194
Joined: Jun 2005

They didn't even check my nodes the first time around when I had Stage I. I would have squacked if I'd known, but until I read your post, I didn't know they checked nodes at that stage. I was told that they got a "clean radius" and that's all that mattered. My second time around I'm a Stage IIA T3N0M0 and they checked 13 nodes I believe. Had they checked the nodes the first time, I might not have had to go through battle #2. Please keep posting because we all learn from each other and I just learned from you! :)

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Well, doesn't that just make you mad! I was told before the surgery that they wouldn't be able to stage me and tell me the next course of treatment until they got the pathology report back, including being sure I had clear margins, achieved by checking the lymph nodes. I'm sorry you had to have a second battle! Hopefully it will all be clean sailing from here on out.

*hugs*
Gail

polarprincess
Posts: 210
Joined: Aug 2008

I am pretty sure lymphatic invasion is different than lymph node involvement, and if your specimen was suspicious for that, yeah you are right for wanting to ask more and getting more info..good for you... we count on our docs though, and I am sure if they thought there was any need for chemo they would have offered it...i know i worried myself sick for quite awhile by something on my pathology report.. it said something about there being a 1 cm size necrotic fat deposit and i researched and assumed it was a tumor deposit, and when i finally asked it was just dead tissue from when i had the polyp removed..so all that worrying for nothing. Memorial Sloan kettering has a little calculator to determine your risk of being disease free 5 and 10 years from now, and for stage I even when you switch around some of the factors, the prognosis is still very excellent-http://www.mskcc.org/mskcc/html/83364.cfm
good luck with everything. I am stage IIIa with a T1 and 1 node positive i also get an excellent prognosis with the calculator.

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Thanks for the info. I plan on asking when I go in a few weeks, just to reassure myself. I really wish I had seen all this stuff earlier, because I would have been able to discuss it with my oncologist at the first visit. Who knew, though?

I'll check out that calculator. I know my statistics should be good, which is wonderful.

*hugs*
Gail

Joy1216's picture
Joy1216
Posts: 293
Joined: Mar 2006

I'm also a Stage 1 survivor, diagnosed March 2006. The surgeon took eight lymph nodes. I had never heard that 12 was standard, so for me ignorance was bliss. All I cared about was that the cancer hadn't spread to my lymph nodes. BTW, I do understand about being "only" Stage 1.
Joy

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