CSN Login
Members Online: 19

Welcome long-term survivors!

greta's picture
greta
Posts: 239
Joined: Jun 2000

Some of you who have been living with cancer for a number of years (in or out of treatment) have asked for a board dedicated to the discussion of long-term survivorship issues. I hope it is helpful.
Best to all,
Greta
(Your CSN staff)

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

I made a post about it on the CRC board to try to explain the differences in the 2 sites as I see it.

Thanks again!
Lisa P.

PamPam2's picture
PamPam2
Posts: 375
Joined: Jan 2009

Good idea. I know just what you are talking about,( I read Your thread on the crc board ), about different issues for long term survivors. I do post occasionally on there when I think I have some beneficial experience or ideas, but this will be nice for those of us no longer in active treatment. Thanks
Pam

John23
Posts: 1832
Joined: Jan 2007

I think it would be a good idea if it was known what time-frame
makes a survivor "long term".

Is this for cancer victims that are still here after 5 or more years, or
less than 5 years? And is it for those that have remained cancer-free
for that entire time?

An enquiring mind wants to know!

Thanks!

John

PhillieG's picture
PhillieG
Posts: 4659
Joined: May 2005

Bah... It's not like I was walking down the street and got mugged!
;-)
-p

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Are you talking about your developing cancer cause if you are I kind of disagree to a point with the post here, in some ways it is kind of like getting mugged.

I mean mugging comes out of the blue without warning - so do many cancer diagnosis. Muggings often produce painful injuries - so do many cancer treatments.
Muggings cause mental traumas for many - so does cancer.
Muggings are brutal - so are many cancer treatments.
Muggings leave scars - so does cancer.

I could go on so sometimes, actually, in my not so positive days, I do kind of feel as if I have been mugged by cancer.

Just my little humble opinion.

All the best,

Bluerose

LaundryQueen's picture
LaundryQueen
Posts: 682
Joined: Mar 2011

And I got hit by a tornado!

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

I know 2 years isn't a very long time, but hope I can join in!

I've been NED since my surgery 22 months ago. :-)

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

Scouty, Suzann, Greta for your work on this!

I wonder if there is a way to alert other cancers' boards as to this new one...

maybe a system-wide post on all boards, or maybe even a 'real' e-mail for those who no longer actively post on a board, from CSN staff?

With all the cross-cancer use of certain chemicals, what holds for one cancer (neuropathy, for example) can hold for many....

Hugs, Kathi

PhillieG's picture
PhillieG
Posts: 4659
Joined: May 2005

What a great idea to have a forum like this for us. We do have different issues than those who are not that far removed from their diagnosis. I think we all can figure out what a "Long Term" cancer patient is. If you can't, then you may have had too much chemo and that would be instant membership.

There are many forums on this site, it's really great. There is (at least) one forum that fits each member's needs.
Thanks again!
-phil

jams67's picture
jams67
Posts: 927
Joined: May 2006

We love our new board! Just a click away from the other one. I noticed at CP8 that the newbies were more comfortable with eachother. They felt they knew eachother better because they were posting on a daily basis. I think this will be a great idea!
Jo Ann

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

To be anal about "definitions"!!! Geez-oh-pete. I don't even know what to say. I think I heard that NIH defines a long term survivor as someone 5 year out from diagnosis. Personally I don't give a rip but I do know that I don't want it to take one thing away from our CRC board. It is meant to compliment it, not replace it.

Please keep in mind that there will be others that have had or have other cancers here too. Tiny One you are more than welcome but keep your celebration post with our fellow semi-colons, it means much more to them than to say someone 6 years into the fight with melanoma.

In talking to some of my other long time NED survivors (5 plus years), we talked about issues like scarring, scar tissue issues especially from radiation due to rectal cancer, diet, lifestyle, supplements, personal changes/differences since cancer, chemo/radiation induced menopause and other things like that. I would imagine that Phil would love to talk to some other long term survivors still in treatment and learn how they keep going and handle things like the fear of burning out everyone around them. Keep me honest buddy!

I would recommend that if you are going to start a new thread, ask yourself a few questions; who is it going to help the most? where can I get the most support and quality answers and use the answers to decide where to post. I would imagine there will be times when you post here and on the CRC board or whatever your cancer is.

I also hope that loads of lurkers look in to see what folks that have been in the fray for many years have to say and what they have to look forward to when chemo, surgeries and the initial diagnosis "stuff" has long worn off. Having a goal is a great thing and can help in wonderful ways.

These are all my opinions and where the heck are Cheryl and Suzann who asked me get this new board so they can provide their input?????

Lisa P.

John23
Posts: 1832
Joined: Jan 2007

Instead of having to explain it daily, it probably would be a good
idea to simply call this forum: "The Five-plus club"; it would've
removed all doubt.

Too late to change?

(I'll go back to my cave now)

John

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

I'm sure this will be a tremendous success and cover so many types of cancer. I hope that all goes well.

Congrats, Lisa for getting this new forum started up and thanks to CSN for making it happen.

Not sure how I fit in anywhere...I'm 6 1 /2 years into my cancer journey, but still actively fighting...I'm a survivor and over 5 years. I'll be checking it out and look forward to contributing if I have something to offer.

-Craig

PhillieG's picture
PhillieG
Posts: 4659
Joined: May 2005

No offense Craig...but are you nuts? It's for people who have been dealing with any cancer for the long term. With all you've been through they could make a forum JUST for you!
;-)
BTW: I heard a segment on NPR about the DaVinci robot. It was interesting but I pretty much knew about it since reading about your experience. It's amazing stuff they are coming out with. I know that you and I have both benefited with "new technology" or treatments. Many others have too.

reddar7's picture
reddar7
Posts: 4
Joined: Oct 2012

6 and 1/2 years is very good. You are the one we want to talk to. You a senior survivor. I would like to know your story. Mostly we would like to hear what you were treated with.
as it seems to have worked better than most everyone else. When it comes to small cell lung cancer, 5 year survivors are like 2 percent.

Betsydoglover's picture
Betsydoglover
Posts: 1210
Joined: Jul 2005

Hi Lisa , John and all -

I think when you feel like a long term survivor then you are. Let's not be nerds and specify a number of years or whether or not you are in treatment.

Lisa, I think this a great idea. I have been on this board since 6/2005, but lately am reluctant to post. My Stage IV journey has been different from most folks - in spite of a recurrence after 3 years, doing really well. I was diagnosed 5/05 and even back in 10/07 when I went to a CCA meeting in Baltimore, I joined the "survivor's" breakout group, cuz that's how I felt.

See signature below. I just had a negative PET scan on Monday - was actually reluctant to share on the CRC board - hard to share really good news with folks who are really in trouble.

Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
6 cycles Xeloda + Avastin,
NED (PET every 3 mo)
Currently on Avastin only

carkris's picture
carkris
Posts: 4513
Joined: Aug 2009

ok I am 16 years out from my first Breast cancer but only 1 year out from my second????????????? (really 3rd but who is counting?)

kdwers's picture
kdwers
Posts: 16
Joined: Nov 2010

I wanted to say thanks for posting~ This is what I am looking for in a "long term" survivor board. We need hope, that survivors really do exsist! Statistics aren't always on our side, real stories are! Thank you!

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

I am another long term survivor, of 23 years, that does exist. lol. There are many of us out there so they say. Yay for our team. lol.

I'm just sayin. Hope that's not considered 'gloating'. lol. Couldn't help but getting that in once more. (see Ron's post here).

All the best, keep on truckin.

Blessings,

Bluerose

RE's picture
RE
Posts: 4606
Joined: Feb 2004

Greta thank you so much this is a great new board, I will surely be visiting from time to time.

RE

RE's picture
RE
Posts: 4606
Joined: Feb 2004

I have been surviving cancer since Oct 19 1997, a date that is bored into my mind. I was cancer free until Feb 14, 2007 (yes Valentines day) when it returned for a curtain call. I have now been cancer free for three years...YEAH! I have survived bc three times, I'm hoping third times the charm or perhaps three strikes and cancer's out!

(¯`•.•´¯) (¯`•.•´¯)
*`•.¸(¯`•.•´¯)¸.•´ ♥
☆ º ♥ `•.¸.•´ ♥ º ☆.¸¸.•´¯`♥RE

carkris's picture
carkris
Posts: 4513
Joined: Aug 2009

thats what I am hoping too RE (for both of us)

New Flower
Posts: 3917
Joined: Aug 2009

Hello everyone,
I am glad that we are having this new subdivision/threadIt is so nice to see many long-term survivors. I have a question: How do you define a long-term survivorship? Maybe if you overcome your prognosis?
As one stupid resident told me:"For your initial diagnosis you have been doing very well"
Can I consider myself a long-term survivor? I was diagnosed about 2&1/2 years ago in May 2008 with stage IIIC breast cancer.
Best of luck to everyone,
Nw Flowers

khsherwood's picture
khsherwood
Posts: 24
Joined: Jan 2011

Hi RE, I am a long time (14 years) survivor of Breast Cancer and almost a long time (4 years) survivor of Ovarian cancer.

I am from Maine and am I wrong ? Or are you standing in the L L Bean store in Freeport? Kelly

Marcia527's picture
Marcia527
Posts: 2731
Joined: Jul 2006

I was diagnosed Aug. 2003 with stage 3a breast cancer.

Kathi posted on breast cancer board about this new site and I came down to check it out. The way I worded that sounds like I took an elevator. But I went to Senior survivors by mistake first. I get lost a lot!

Hi everyone!

ron50's picture
ron50
Posts: 1262
Joined: Nov 2001

Thanks for the new board Greta. I was dx in 1998 with stage 111c colon cancer(6 nodes) I have been ca free ever since, as a matter of fact I have just had a scope and have been put out to three yearlies. I fully agree with Scouty. I have been out of treatment for so long that nothing I went thru is of much value to present day sufferers. Having said that more than a few people have said to me ,whatever treatment you had,I want it. My agreeement with scouty is about how we long tirmers have a whole different range of problems confronting us. Since ca I have had pancreatitis,lost my gall-bladder,suffered several bouts of kidney stones,developed moderate to severe neuropathy of the lower legs and left hand,developed three different lots of arthritis,dx with FSGS (scarring of the kidney filters),developed two frozen shoulders ,vertigo attacks(possibly menieres disease), and perhaps worst of all my wife and I separated. So now and for the last three years I live alone and have to deal with all of my ailments alone as well as keeping on working to support myself.
One of my favourite sayings is "surviving survival ain't easy" . Many is the time that I have thought of opting out but I have managed to keep going. I don't get treatment for depression . I most certainly need it,I just don't want it. In the meantime I get by with a little help from my friends on these boards, Ron.

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

What, may I ask, is a frozen shoulder? BOTH my shoulders have pain when I lift them above my head, and my right one (the non 'special' arm from breast cancer) VERY painfully 'pops out' if I so much as twist the wrong way....is this frozen shoulder?

BIG hugs to you, one of my heros. You know we are always here....whatever you need!

hugs, Kathi

ron50's picture
ron50
Posts: 1262
Joined: Nov 2001

Shoulders are a bit different to most joints ,they consist of a web of tendons and sinews that hold the shoulder joint into the socket. The tendons and sinews become sticky and inhibit the rotation of the shoulder. I can't raise my arms above shoulder level,I can't reach behind my back and if you try either you are rewarded with severe pain. Apparently they will get better in time of their own accord but it can take from 18 mos to 3 years plus. There are 3 stages freezing (painful)frozen (Not so painful)and healing ,not painful but restrictive. They wanted to do a saline distension on my left shoulder . They pump saline and cortisone into the joint to blow appart all the adhesions. I chose not to as it does not come with guarantees. Certainly a lot of auto immune problems seem to follow chemo. I have osteo,inflammatory and psoriatic arthritis. I was injecting methotrexate every saturday (not nice it feels just like 5Fu). I started suffering severe vertigo attacks bad enough to put me in hospital and always on a Sunday,so I stopped the meth. Now I am having to sit down regularly when I shop. They think that the neuropathy is also an auto immune result of the arthritis. The kidneys are either caused by fleet preps or arthritis.
But life goes on and we all have our burdens to bear . (((((((kathi))))))))ron.

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

...you described my shoulder pain to the T!

Darn beast....thought I was thru with it...sigh...

I figured it was more the osteoporosis from the chemo, that continues to plague me....my last DEXA has me at -2.7T...sigh...the bones of a 90 year old woman. I'm a bit anxious now, my 87-year-old mother is starting 'compression fractures' in her spine. VERY painful, and, according to her doc, not much to do for it....BUT (It's all about ME of course) I realized that with my osteo in 'full bloom', I could start having the same.....It's tough, this living thing!!!

BIG hugs, as always, dearheart!

Kathi

ron50's picture
ron50
Posts: 1262
Joined: Nov 2001

G'day again Kathi,
Under no circumstances let them prescribe Prednisone or any related steroid for your arthritis or shoulders. It is the WORST medication that I know of for stripping calcium from your bones. I was on a high dose for my kidneys for nearly 18 mos and I was orderred to take two calcium supplements three times a day and there was some conjecture as to whether that would help. Cheers Ron.

RGW
Posts: 59
Joined: Mar 2010

what is the "CRC Board?"

abrub's picture
abrub
Posts: 1528
Joined: Mar 2010

I'm also trying to decide if I fit into Long Term survivor at 3 1/2 years post dx (3 years NED). Tho I'm glad my experiences can be helpful to the newer members of our "family", I often want to escape the discussions of the nitty-gritty.

Based on out-living prognosis, one dr (whom I fired) "gave" me 2 years, tho possibly as long as 3-5. I currently feel fine, except for residual neuropathy plus pain from adhesions.

I do appreciate having another place to go.

Alice

Appendix Cancer, dx 4/07

2bhealed's picture
2bhealed
Posts: 2084
Joined: Dec 2001

Glad to see you!!

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

i am a 2 yr survivor dx with crc in sept 2008.this web site was great for me during my radiation,surgery.and 10 rounds of chemo.BUT it seems after chemo things for me went down hill physically due to the lasting side effects and mentally having a hard time coping with where am i supposed to go from here.as a fellow crc member put it well"Life after cancer,now what" im going to give this new board a try as i have not posted since janurary 2010.it will be good to see some old friends and hopefully make some new ones...Godbless...johnnybegood

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

What do you all see as the purpose of this board vs the "long term effects board"? Is that board for the physical aspect and this board for the mental? Just wondering!!
Cathy
21 years, Recurring Hodgkins Lymphoma
3 years, Invasive Ductal Carcinoma

ron50's picture
ron50
Posts: 1262
Joined: Nov 2001

Part of it is that a lot of us don't have any pertinent input to the original board we were on. I was on a regime of chemo that is no longer used so it is not much use telling some one in todays treatment what I did. Having said that it is really good for someone in treatment now to be able to go to a board and check out what can be achieved with a bit of luck. I guess some of the long term survivors don't have ongoing issues (hard to imagine)so it gives them somewhere to go without seeming to gloat(a term i have heard used against a long term survivor)about their survival. Cheers Ron.

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

It's hard to be proud of our accomplishment, when others are not quite so lucky. Even when we all fought hard, while in the treatment cycle....

Harder still to whine about normal, everyday stuff on an active treatment board when there are others who are facing eternity....

IMHO,
Kathi

6 years (November - YEA!) stage III rectal (squamous cell carcinoma)
5 years (August - YEA!) stage II breast (invasive ductal adenocarcinoma)
no reoccurance, to date (someone have some wood for me to knock on?)

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

I couldn't believe that comment about someone gloating over their survivorship, how horrific for anyone to suggest a survivor would 'gloat'. Hey maybe they were talking about me. If so 'poo on you'. lol. Hmm, that was mature. lol. Well it's true, that is just a horrible thing to say about a survivor. If someone was talking about me I could care less but if it was about anyone else I am writing this for them too and support their 'gloating', OMG that makes me so angry someone would decribe another survivor that way.

If you survive cancer and feel like shouting it from the rooftops you should, as far as I am concerned, and relating your story to others who feel hopeless is nothing but a positive thing. Gloating over survivership - now I truly have heard it all.

I AM A 23 YEAR SURVIVOR AND I AM OVER THE MOON ABOUT THAT, TAKE THAT, geez Louise whoever wrote that on this site should have a talking to by those who have fought the tough battle in order to even be able to 'gloat' about their survivorship. You think dealing with 200 side effects of treatments of decades ago is a fun thing? I HAVE BEEN CONSIDERED CURED - and if I want to shout it in upper case I will.

Shame on you, whoever used that word 'gloat' in that negative way to descirbe someone who was thrilled about their survival, shame on you. This site is about hope, at least that is the way I look at it, and applauding the positive, and that is what I intend to do by supporting others instead of finding fault with those on their journies with cancer and if I can be an example, like the survivor who someone is having an issue with with their 'gloating' over their survivorship, grrrrrrrrrr makes me so mad, then I say be that example by sharing your story and your positive outcome.

Man this ticks me off.

Blessings,
Bluerose

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

I have developed tender spots that are at first painful all on their own, kind of like 10 bruises - one on top of the other. Then after a couple of months they don't hurt all the time on their own but instead you can't put anything on them - one leg on top of the other in bed where the pain spot is, and sometimes you can't even touch the skin without it hurting as if you have hit a bruised area hard.

I have had xrays of these spots that are on my right leg mostly, just got ultrasound results back and of course showed nothing (as many of us have experienced when trying to get answers about other medical issues no doubt related to treatments of years gone by). Anywho next step is a neurlogist (about time) and I am sure they will find it's all nerve damage from all the transplant treatments I had. I have been diagnosed with fibromyalgia which it also could be, nerve damage and fibro - pretty closely related in my mind in many ways.

Have any of you long term survivors experienced this kind of pain spots? The number of these things seems to be growing and it's kind of freaking me out.

Does this sound familiar to anyone? Thanks for reading this.

Blessings,

Bluerose
23 year cancer survivor - NHL
Autologus bone marrow transplant in 1991 on recurrance, previously CHOP and localized body rads to abdomen and pelvis, total body rads in 1991 with transplant.
Multiple side effects from treatments to date.

greta's picture
greta
Posts: 239
Joined: Jun 2000

I haven't found one, single definition of a long-term cancer survivor. The most predominant one seems to be 5-years of cancer-free survival. There are also various proposed definitions for certain specific cancers that range from 3 to 5 years of cancer-free survival. However, most discussions of long-term survivorship that I reviewed don't define who a long-term survivor is in terms of either years since diagnosis or disease status (remission or not).

The long-term effects board was created as a place for members to discuss long-term effects of cancer or its treatment. This could be effects other than physical, but was created at the request of members who wanted to talk about physical effects.

The long-term survivors board was created for those who self-define as a long-term survivor to talk about whatever their long-term survivorship issues might be.

Would it be helpful to have two boards for long-term survivors--one for those in remission and one for those who aren't? Or is the preference to leave this board as is?

Regards,
Greta
Your CSN staff

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

And not get too technical as to what 'qualifies' you to post here....anyone out of the throws of first-line treatment issues, which I can't answer anyway, I think is ok...IMHO...

I have many dear friends that are technically still 'in treatment' because of drugs to keep reoccurance at bay...heck, me taking Tamoxifen for my breast cancer could get me into this group, too...

I would hate to have to go multiple places to see all of my friends...I am already actively posting on the colorectal cancer, and the breast cancer boards...one more (long term survivors) is ok...two...well, I have too much chemo brain left over to remember that many!!

Thanks, again, Greta, for all of your kind work on this!

Hugs, Kathi

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

will always be colorectal but on the advise of my surgen in janurary2010 he suggested i take a break from all cancer talk for a while.i did as he said and have missed my semi colons very much,still lurking every once in a while only to be in tears afterwords because of our loses or so many new people with the beast.kathim said there was a new board for me to try.as so many others i am effected by the long term effects of radiation and chemo which by the way i was never told about from any doctor.i am hoping this new board will give me some insight on how others deal with these issues physically and mentally.i dont consider myself long term yet but would like to hear how to cope so i can be a long term survivor....Godbless....johnnybegood

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

I have already learned something from my great guru, Ron, about frozen shoulder...

I just thought I was getting old...and that's not bad, either!

Hugs, Kathi

Marcia527's picture
Marcia527
Posts: 2731
Joined: Jul 2006

I think the board is fine like it is. Thanks Greta.

PhillieG's picture
PhillieG
Posts: 4659
Joined: May 2005
I think it should have a light-blue background with a red border. Just leave it as is. I think it's a good idea to have it but people are not going to agree on what "long-term" means as opposed to "short-term". I would imagine we all know what the difference between long and short is but people are going to do whatever they want anyway. It comes out every week in the forums we already have. People who have been at this for a long time will have their discussions and others can join in and share or whatever. Over time I think it will find it's purpose and audience and this will be a moot point.
It IS important that it's light blue though...
:-)
KathiM's picture
KathiM
Posts: 7864
Joined: Aug 2005

Light ROYAL blue is better....ROFL!

Trust you, dearheart, to put a smile on my face...

Hugs, Kathi

2bhealed's picture
2bhealed
Posts: 2084
Joined: Dec 2001

Greta!

This board is a relief and a respite for me. It's been too hard to post much on our CRC board for me personally due to losing too many friends on there to cope with at times. But I still want to pal around with my buds on here so it's wonderful to see my semis chiming in here.

Just wanted to add my $.02.

For anyone else out there I'm a Stage III colon cancer survivor who has been cancer free for 9 years post surgery (8/01) having done only alternatives (juicing, TCM, acupuncture, etc) to heal my cancer.

This board was one of my life savers at the time and the place I found friendships that have lasted (with those who are still alive) all these years. You know who you are! ;-) The ones who have gone on before us will remain in my heart forever.

peace, emily

Kenny H.'s picture
Kenny H.
Posts: 503
Joined: Aug 2010

Just lurking, hoping one day I make it to LTS status.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network