Forum observation

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Willow.NZ
Posts: 176
Joined: Sun Mar 08, 2015 3:05 am

Forum observation

Postby Willow.NZ » Tue Jan 19, 2016 11:15 am

I know this a topic that has been discussed & likely to pop up again in the future....But I find it an interesting observation that many say how 'lucky' it for stage 1 patients to have picked up at an early stage. I imagine no one feels lucky when they are diagnosed but once staged the patient does feel more fortunate or lucky to be at the earlier spectrum. Yes the sooner picked up the better - but never having cancer in the first place is the ideal. I would be completely terrified to be diagnosed at any stage (but yes obvious which stage I would prefer!). I know it may be hard to hear my opinion when I am not a patient myself, but I often sense some resentment from advanced sufferes compared to people who are diagnosed at earlier stages. I'm guessing it may just hit a raw nerve for some and bring up a lot of emotions... (And a recent thread that triggered my thoughts here may have been more about wording then actual staging that sparked some emotion).

Personally I do know it has taken my family a while to accept my Dads diagnosis and I still struggle. I definitely feel gutted that there were signs there and even as an RN I didn't push my Dad or even think we really had to....hindsight is a beautiful thing.

I can only but imagine how it feels to experience first hand what some of you have experienced so please know I don't want to offend anyone. I just think it is good to remind ourselves that everyone's journey is their own....
Dad diagnosed Sept 14 Stage IV. Age 57yrs. Transverse colon - spread to Retroperitoneal, Mesenteric & Supraclavicular lymph nodes. Folfiri commenced Sept 14.
April 15 - Bowel resection
August 15, stable scan
Feb 16 - No signs of cancer on scan...stop chemo & scan in 3 month
Scan April 16, Crazy growth to stomach, lymph nodes & multiple mets to liver. Commencing Folfox.
August: chemo not working. Stopped treatment.
September 3rd 2016 peacefully left this earth.

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BrownBagger
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Location: Central NYS

Re: Forum observation

Postby BrownBagger » Tue Jan 19, 2016 11:50 am

Trust me, if you're looking at a Stage 4 dx, anything less than that seems "lucky." I take your point, but there's a huge difference between holding out realistic hope for a cure, and facing the likelihood that your days are numbered.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

nkoske
Posts: 442
Joined: Fri Feb 22, 2013 2:00 pm
Location: California

Re: Forum observation

Postby nkoske » Tue Jan 19, 2016 12:32 pm

I suppose one way to read it.

Another way to read it is that those of us with more advanced staged cancers are glad that those with lower stage cancers don't have to go through what that bad things that more advanced stage cancers patients have to go through. It's not said to belittle ones experience, just to say they are fortunate. Pretty sure everyone on here wishes they were lucky enough to have their cancer caught earlier.

For those younger than the regular colonoscopy screenings, it's very fortunate (lucky) to have your cancer found even prior to it being a stage 4. The problem is, is by the time you're symptomatic it's likely at least a stage 3.

I feel lucky that mine was only a stage 3. I feel lucky that my tumor was located near the rectum (earlier symptoms). I feel lucky my body tolerated both RT and Chemo so well. I feel lucky I didn't have to deal with an ostomy. The list goes on and on.

For me it's about perspective. When I was having my first PET scan during my treatment planning, the wait took a while. A nurse came in and said there was a kid on the machine I needed to get on who wasn't holding still. I couldn't imagine having to have my son go through cancer, yet everyday there are parents that have to deal with that. I'm lucky that my son is perfectly healthy. One thing I learned during this whole process is that no matter my situation someone has it worse off than me.
Nick, DX @ age 34, IIIB Rectal Cancer 10/2012
ChemoRad IMRT 11/2012
Laparoscopic LAR 1/2013 (No Ileo)
Post Surgery Path IIIB (2/15 LN)
Chemo 2/2013 (XelOx)
Currently NED, Graduated from Med Onc 10/2017

Willow.NZ
Posts: 176
Joined: Sun Mar 08, 2015 3:05 am

Re: Forum observation

Postby Willow.NZ » Tue Jan 19, 2016 12:51 pm

Gives me good perspective....I suppose when you get the diagnosis and go through treatments your idea of what 'good'and 'lucky' etc is. Cancer changes lifes perspective on things I suppose. When I think about it going through stuff with my Dad, at each scan lately we feel like great it hasn't spread more... A couple of years ago I couldn't entertain the thought of thinking that it would feel like great new that cancer is not in the lungs or whatever.
Dad diagnosed Sept 14 Stage IV. Age 57yrs. Transverse colon - spread to Retroperitoneal, Mesenteric & Supraclavicular lymph nodes. Folfiri commenced Sept 14.
April 15 - Bowel resection
August 15, stable scan
Feb 16 - No signs of cancer on scan...stop chemo & scan in 3 month
Scan April 16, Crazy growth to stomach, lymph nodes & multiple mets to liver. Commencing Folfox.
August: chemo not working. Stopped treatment.
September 3rd 2016 peacefully left this earth.

weisssoccermom
Posts: 5988
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Forum observation

Postby weisssoccermom » Tue Jan 19, 2016 2:29 pm

I feel 'fortunate' that I caught mine at an early stage but still wish that I had detected it earlier. I often wonder how I would have handled my situation had my cancer been more advanced when diagnosed and I get angry at my then GP for not listening to me and just brushing me off. There are times when I think what it would have been like HAD she listened to me and ordered a scope a few years earlier, but I can't turn back the clock. I can tell you that because I didn't want the LAR, I felt that there was no hope, no one to help me...and I was told that I had two years to live...certainly not something anyone wants to hear.

Certainly everyone will agree that when you hear those words, 'you have cancer' your world changes...regardless of what stage you are ultimately diagnosed with. It can't help but change you. I think the first thing most people assume is 'I'm going to die from this'.....it's just natural. Personally, even though I've been around friends with stage IV and who have ultimately passed from cancer, I can't even begin to understand what they must be facing each and every day. I hope though, that everyone understands that although circumstances are different, each and every person who has faced this cancer diagnosis can understand that it changes us...regardless of what stage we are at. It can't help but change a person because cancer isn't something like a bad ear infection that can ultimately be cured. Even though I am over 9 years from diagnosis, the thoughts of recurrence aren't completely gone from my mind and it doesn't take much in the way of 'symptoms' to bring all of it back to the focal point of my life....even if it is only temporarily.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

radnyc
Posts: 446
Joined: Tue Apr 06, 2010 6:32 pm

Re: Forum observation

Postby radnyc » Tue Jan 19, 2016 3:14 pm

BrownBagger wrote:Trust me, if you're looking at a Stage 4 dx, anything less than that seems "lucky." I take your point, but there's a huge difference between holding out realistic hope for a cure, and facing the likelihood that your days are numbered.

Well said!
DX Jan 2010, at age 47
Feb - colon resection - 2/17 nodes positive
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April 2011
HAI Pump removed Dec 2015

kandj
Posts: 314
Joined: Sun Sep 27, 2015 11:29 am

Re: Forum observation

Postby kandj » Tue Jan 19, 2016 5:38 pm

All kinds of people on here are lucky. Lucky they caught it at stage 1. Lucky they caught it at stage 2. Lucky they caught it at stage 3. Lucky they have only had it spread to one organ and that organ can be treated. Lucky they have a care taker. Lucky they can see a certain doctor. Lucky they have a great job that supports them and the time they need off. Lucky they have family that support them. Lucky they have friends that support them. Lucky they have a hobby or sport they love that can keep their mind off cancer. Lucky they respond well to chemo drugs. Lucky they don't have side effects. I could go on and on but I think you get the point.

I personally think I am pretty lucky. I have a husband who loves me and kids who love him and I. I am lucky that I was able to meet the love of my life when I was 16 and as of Today I have spent 19 years of my life loving him. Cancer doesn't get to take that away ever.
wife to DH, dx 8/15 stage IV @36, 12+ liver Mets
HAI placed 12/15
Liver resect 5/19/2016 15-20 mets (surgeon lost count)
Liver Recurrence 7/2017-radiation
Lung met 10/18 VATS
lung/adrenal gland recurrence 11/19
Adrenal ablation 2/20 VATS 3/20
Radiation: 9/20 adrenal gland, 2/21 pancreatic node
9/2021 liver, 4/22 esophageal node
7/2023 proton therapy: liver
140+ rounds of chemo and counting
Chest nodes, lung nodules, and esophageal nodes currently.

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Bev G
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Facebook Username: Bev Golde
Location: Quechee, VT

Re: Forum observation

Postby Bev G » Tue Jan 19, 2016 5:41 pm

kandj wrote:All kinds of people on here are lucky. Lucky they caught it at stage 1. Lucky they caught it at stage 2. Lucky they caught it at stage 3. Lucky they have only had it spread to one organ and that organ can be treated. Lucky they have a care taker. Lucky they can see a certain doctor. Lucky they have a great job that supports them and the time they need off. Lucky they have family that support them. Lucky they have friends that support them. Lucky they have a hobby or sport they love that can keep their mind off cancer. Lucky they respond well to chemo drugs. Lucky they don't have side effects. I could go on and on but I think you get the point.

I personally think I am pretty lucky. I have a husband who loves me and kids who love him and I. I am lucky that I was able to meet the love of my life when I was 16 and as of Today I have spent 19 years of my life loving him. Cancer doesn't get to take that away ever.


Poignant, well-said. Wishing continued good "luck" to you both.

Bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

SugarBubbie
Posts: 239
Joined: Sun Jun 12, 2011 3:55 pm
Facebook Username: Rhonda Pinkston
Location: Texas

Re: Forum observation

Postby SugarBubbie » Tue Jan 19, 2016 6:55 pm

I wish I knew what to say to give comfort to those who are diagnosed at later stages. I have been very fortunate that all three of my primary cancers were found early. I certainly sympathize in a way. The treatments you have to undergo even for early stage cancers can be quite debilitating.
DX Stage II anal cancer 2007 age 57
Radiation 6 weeks, Xeloda/oxilaplatin
DX Breast cancer Jun 2011 Stage3 one lymph nodes
Taxol 12 weeks FAC 4 tx, 31 radiations
5 year survivor certificate from MDA 2012 for anal cancer
DX triple neg bc oct 2015 4 rounds adriamyicyn, 20 radiations
"Positivity has no downside"

justin case
Posts: 4269
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: Forum observation

Postby justin case » Tue Jan 19, 2016 7:12 pm

I've gotten 4 years so far, and I don't intend to look much harder at my early retirement, although if I live to 62, I ain't workin no more.
:roll: :roll: :roll: :roll: :roll:
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

Willow.NZ
Posts: 176
Joined: Sun Mar 08, 2015 3:05 am

Re: Forum observation

Postby Willow.NZ » Tue Jan 19, 2016 9:37 pm

I suppose luck does play its part. Someone who has been battling cancer we know just passed. Young guy & it has made my Dad so sad...me too but It also makes me appreciate how well Dad Is responding. Thank you all for sharing...has made me really think & have a deeper understanding...
Dad diagnosed Sept 14 Stage IV. Age 57yrs. Transverse colon - spread to Retroperitoneal, Mesenteric & Supraclavicular lymph nodes. Folfiri commenced Sept 14.
April 15 - Bowel resection
August 15, stable scan
Feb 16 - No signs of cancer on scan...stop chemo & scan in 3 month
Scan April 16, Crazy growth to stomach, lymph nodes & multiple mets to liver. Commencing Folfox.
August: chemo not working. Stopped treatment.
September 3rd 2016 peacefully left this earth.

KElizabeth
Posts: 400
Joined: Sat Oct 31, 2015 12:41 pm
Facebook Username: KElizabeth
Location: Omaha

Re: Forum observation

Postby KElizabeth » Tue Jan 19, 2016 11:56 pm

kandj wrote:All kinds of people on here are lucky. Lucky they caught it at stage 1. Lucky they caught it at stage 2. Lucky they caught it at stage 3. Lucky they have only had it spread to one organ and that organ can be treated. Lucky they have a care taker. Lucky they can see a certain doctor. Lucky they have a great job that supports them and the time they need off. Lucky they have family that support them. Lucky they have friends that support them. Lucky they have a hobby or sport they love that can keep their mind off cancer. Lucky they respond well to chemo drugs. Lucky they don't have side effects. I could go on and on but I think you get the point.

I personally think I am pretty lucky. I have a husband who loves me and kids who love him and I. I am lucky that I was able to meet the love of my life when I was 16 and as of Today I have spent 19 years of my life loving him. Cancer doesn't get to take that away ever.


I agree with Bev. We'll said indeed. You can always find a way to be thankful in this life. I prefer it to feeling angry, disappointed and terrified anyday. I'm lucky for so many reasons I can't even begin to count. I am especially grateful to have this forum to help me through this part of my life.
Female age 39- ,2 teens.
Colon Cancer - DX March 2013
Age 34 at DX - Stage III B
Resection surgery -May 2013
FOLFOX - June, 2013 to Sept, 2013
5FU plus leukavorin Sept, 2013 to Dec, 2013
METs liver and lungs discovered Sept, 2015
KRAS - MSS
FOLFIRI plus Avastin - Sept, 2015 - July 2017
Durvalumab and Cediranib Sept 2017 Dec 17
FOLFOX with desensitization protocol - current

Buckeye
Posts: 109
Joined: Mon Jan 18, 2016 7:02 pm

Re: Forum observation

Postby Buckeye » Wed Jan 20, 2016 12:41 pm

If you are younger than 50 and you catch the cancer at stage 1, then yes I consider myself very lucky indeed. Like so many have stated on here there are reasons to feel lucky when you are diagnosed with colorectal cancer.
Dx 10/20/15 stage 1 T1N0M0 1.3cmx1.1cmx1cm low grade ( well to moderately differentiated) Rectal cancer age 47
Loving Husband and father of two girls age 19 & 15 Sole income provider
CEA <0.5
CT, MRI and PET show no metastatic spread
LAR Laparoscopic TME 11/30/15 with Illo
Pathology clean no lymph node or vascular involvement. Confirmed Stage1
No chemo/rad cancer free now and forever.
Illo reversal 01/26/16

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NZJay
Posts: 640
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Location: NZ

Re: Forum observation

Postby NZJay » Wed Jan 20, 2016 2:31 pm

Suffering and fear are totally relative and measurable only against one's personal experience.

Hence why I don't bitch and moan when someone comes crying to me about their flu or break-up. For all I know it could be the worst thing they've ever experienced, as cancer is for me.

Peace :lol:
11-13 Dx CC
SPS T4b(touched stomach organ),N1(3/23),M0(Stage 3B)
11-13: resect + partial gastrect
2-14: 1 Tx Cape + Oxy; renal failure, colitis
4-14: 7 Tx Capecitabine
1-15: clear CT
7-15: clear scope
1-16: clear CT
3-17: clear CT
10-17: clear scope (5 year gap now!)
CEA@dx: 8.4 / 6-15: 4.0 / 10-15: 4.2 / 2-16: 4.9 / 7-16: 4.9 / 11-16: 5.0 / 6-17: 4.5
NED since resection

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Bev G
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Facebook Username: Bev Golde
Location: Quechee, VT

Re: Forum observation

Postby Bev G » Wed Jan 20, 2016 8:46 pm

NZJay wrote:Suffering and fear are totally relative and measurable only against one's personal experience.

Hence why I don't bitch and moan when someone comes crying to me about their flu or break-up. For all I know it could be the worst thing they've ever experienced, as cancer is for me.

Peace :lol:


LIKE [XX]
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now


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