Long-Term effects of being an early stage survivor?

[KatieB]

Some have reported lasting side effects of treatments- chemo/radiation, etc....

Other's experience physical limitations or disabilities, and almost all report residual stress relating to test times and the thought of recurrence.

And then there are some that put cancer out of their minds completely as though they never had it.

How do you deal with any long-term effects of being an early stage survivor?

[Annette]

I hope I can count myself as part of this group. I know that I am lucky not to have had to have chemo or radiation. But the stress can cause physical reactions that are very similar. I am still at the three month visit stage until September. So a week or so before the x-ray or CT I get so nervous my stomach starts to ache. Many nights I am up most of the night with a nervous stomach. My shoulder blades literally hurt where the scars are. I know as soon as the Dr. says "Everything looks fine..." my shoulders stop hurting and in a day or two my stomach turns itself around.

I know it's stress - because I have been abnormally stressed lately in addition to the stress of the scan. I have one more CT scan in September then the Dr. says we will be at 2 years out and it's time to go to six month checks. Right now that is stressful to think about. I hope that in the middle of that time things will stay calm and I will only have the anxiety at test time.

I am more tolerant on the road than I once was. If someone needs to cut in - that's fine I have no problem getting home 10 seconds later and with no steam coming out of my ears. So the anxiety of some driving situations has eased.

The one thing that I am horrible at - is exercising. I know I would be doing so much better if I would get off my duff. I have lower back pain if I stand too long and it is just because I do no exercising at all. One day maybe I will - just not today.

[Bud Baker]

I think we all have to deal with the thought of recurrence in our own way. I spent a lot of time researching the most likely possibilities and treatments for them so I would be prepared to make the best decisions if there is a recurrence.

As for long term side effects, I have been very lucky in that department. I have some chemo nerve damage that causes pain in my toes, mostly during long distance bike rides, but I haven't experienced anything worse than that, so I think I'm doing great.

[Alan]

It's been 2 years since dx. 17 months since last chemo. I've been on a 3 month scan schedule. I go back this month just for Dr. visit. (onco+ pulminary). I'm betting they will put it at 6 months from here. I'm ok with that as so far "it" is still in remission. I really don't get too worked up prior to a scan anymore. I used to be scared to death. sorry, just that old cliche. I try to stay strong, I think it's worse for Susan. She lost her dad this way back in 1985. I understand what remission is. I know it's not cured. If and when it recurs, I know that my cancer team will be there for me. I'll take whatever bullets come my way. All of us know that we are the lucky ones. This awful disease claims way more than it should. I can't stand reading stories that sufferers can't get what they need because of insurance stuff. The science is there, the technology is there. Every patient should be helped. We are indeed the lucky ones.

I'm reminded 24/7 about where I stand because of neuropothy in my right arm and shoulder. I can live with that small inconvenience. We all have battle scars. I'm starting to volunteer soon at the center where I was treated. I feel like I owe a debt that I'll never be able to repay. I'll do whatever I can, maybe I'll drive, whatever. So as far as "long term", I'm hoping for my 5 year leaf on the tree over there. That's the goal right now. 2 down 3 to go. I'm happy about that. Someone told me early on that if you're going to have cancer, thiat's the one you want. Huh? I never wanted any but the sad fact is that almost half of us will get it. As long as i'm here, I am a lucky SOB !!!!

Alan

[Joppette]

Good topic. While I was very aware of the statistics of reocurrence, it never crossed my mind that it would happen to me. Because I was proactive in finding out if I had cancer at all, I just assumed that it was found early, and it was done.

In February, I saw my Onc. for my annual check-up, and felt I was just going through the normal routine. As I stood up to leave, and he told me that they "found something new", it totally surprised me. I absolutely thought I was done with this cancer thing. I was four years out. It was done, I thought.

I'm not done. While my spot is a new cancer, and early stage, and I remain optimistic, I'm also aware of other realities. I only have so many lobes. I can only tolerate chemo so many times. I can only have radiation so many times.

So while the news is "good", it also is an indicator that if it does reoccur again, that each time it does, it shortens my options.

I'm not fearful of this, but I am realistic.

I am living with cancer. I'll never be free of it. I accept that. I went from a once-a-year check up status to a 3 month status very quickly. I just try to take this life one day at a time, and not be fatalistic about it.

But the reality of it is this.....we are LIVING WITH CANCER. So be it.

Judy in MI

[paulette3]

I have some neuropthy in my feet that I've learned to live with. I have to take a mild anti-depressant to keep my emotions level. (after chemo I found myself easily crying or getting really irritable at people) The chemo really affected my eyesight and I've had to get new glasses each year since. I don't know when that will stop. Other than those issues I deal with the scanxiety for about 2 weeks before my 6 month scans.

But I'm alive and I am thankful every day. I try to live more fully now and enjoy simple things.

Paulette

[chloesmom]

Chemo caused me to lose some hearing-it's very annoying, but small compared to some lasting side effects people experience.

I feel the only real lasting effect other than hearing is the worry and anxiety that really manifests during the month of my scan or chest xray.

Cindy

[eric byrne]

May I say from the outset,congratulations to each and everyone of you,in the face of this dx,you all demonstrate the courage required to not only survive the ordeal but still find happiness and joy in living each day.

I have to say that following my dx,my treaments,chemo and surgery,has left no residual effects on me,perhaps a bit of breathlessness in climbing gradients,due I think more to lack of fitness and my weight increase of 42lbs since my dx,rather than my upper right lobectomy.This is now being addressed by my new fitness regime and taking more care with my diet(OK that was shot to pieces on Arran)but I am now back on my treadmill.

Yes it is enevitable that little thoughts of re-occurance can pervade my thoughts from time to time,I always nip this in the bud by distracting myself,in a myriad of ways,bottom line, get out of the bed or chair and do something,particularly something you enjoy-housework,mow the lawn,clean out the garage,no only kidding,for myself its getting into the car drive into the country, play my favourite music,find some subjects that are just aching to have their pic taken and post them in here.

I take hope by considering the many others here who share my dx and who demonstate to others on a daily basis,the joy of life,and not let cancer spoil the party.

[Alan]

Well said Eric and thank you for all you share with us. The photos at Arran are extremely beautiful. The coast and birds, and rocks and things look the same as I remember seeing. I particularly admired the scotch distillary as you might guess. Were you allowed more than one sample? Was that you bellying up at the pub? We have a folk festival in Philly every summer. I don't think you would enjoy it though as it resembles Woodstock. I went way back when a few times when it was small. Bonnie Raight played there along with one of my all time favorites Fairport Convention. I think you've heard of them. I think that shows my age. I also went to Peterborough and saw Donavan. uh oh. I think I'm in the wrong forum now, I did admit to babbling though.