Fear of recurrence

AllisonMN

Hi everyone,

I'm new to this so please bear with me.

I'm 23 and a 2 year survivor of Hodgkin's. I've recently become more and more fearful of a recurrence. Intellectually it seems counterintuitive to be more scared the further out from the cancer I get, but yet this fear seems to be growing.

I guess part of it is the typical injustice of Hodgkin's and how it strikes at such a young age. The thought of being saddled with this burden for the rest of my life sometimes seems overwhelming. I think, "I'm I'm only 23 how many more CTs and many more chances for another round are there?" Couple this with all the long-term risks from treatment and an abnormal pap smear (but thankfully normal biopsy results) and I feel like I'm simply a time bomb.

I used to look at my cancer experience as a source of strength, "If I can get through that I can do anything", now it scares me just to think about it. I sometimes wake up in the middle of the night panicked that it's back and I'm dying and no one knows.

I guess I'm just wondering if this is in any way "normal". If anyone's had a similar transition or if I'm just freaking out and should really talk to someone?

Any input or personal experience would be much appreciated.

Thanks so much for "listening"!

Sincerely,

Allison
allisonl4041@yahoo.com

AlloMan

Dear Allison,

If you've gone two years without a relapse, I think you're in good shape. I've been told by one doctor if you can go three years, you're out of the woods. Even if you do relapse, since it's been so long since you were first treated, the chances are good a second go-round of treatment will do the trick.

I think living post-treatment is like living with a man with a gun in your house. Most of the time you don't see him. But there are days when he follows you around, or shows up at the dining room table or you wake up to find him sitting on the bed. You just hope he doesn't start shooting.

Rationally, cancer will either kill you or it won't. If it will, you don't have as much time on this planet as you'd hoped, and the time and energy used to worry about relapse should've been spent on more important things. If it won't kill you, you're worrying about something that won't happen. But it's hard to be rational.

All cancers used to be fatal. Now many are curable or have become chronic. The good news for many of us diagnosed with cancer is that we haven't died of the disease. The bad news is we have this cloud over our head.

Getting cancer at a young age is a double edged sword. It's good in that your body can handle treatment a lot better than if you were 40 years older, but if treatment doesn't work, there's a lot left undone.

Sure there's long term risks to cancer treatment. But you would've risked death if you didn't get treated. I've had a lot of chemo. I've been told as a result, my chances of developing leukemia go from .3% to 3%. If I didn't get chemo, my chances of dying of Hodgkins would've been 100%.

It sounds to me what you're feeling is normal, if not very productive. If you really stress out, you WILL be a time bomb. Being under big time stress can do a number on your immune system (it's been through enough) and open you up to infections and other bad stuff.

Going through treatment, and post treatment, I've worked with psychiatrists and social workers. The Leukemia & Lymphoma Society sponsors a monthly support group where I live, contact your local hospital(s) to see if there's one near you. Find someone to talk to. Let this stress out (I've found exercise can help. You may want to look into yoga).

The best revenge against cancer? Live well. Get some help and get rid of this baggage. Life, even a cancer-free one, is too short to stress out!

sherra

Allison-
You're not alone! I'm 23 and I've been in remission for about 6 months. I am ready to get on with my life and to put the cancer behind me but I also fear the cancer coming back on almost a daily basis. I know that the feelings of fear are normal and that we are far from alone! Its to be expected for all we've been through. I have a hard time even going in for check-ups, its like my body goes into a mode out in the waiting room-I get extremly anixous and my stomach starts doing somersaults. None of my friends can even begin to start to know how I feel-the biggest thing they've dealt with is being pregnant (I'd give anything to have that be my biggest problem)
If the worring becomes overwelming you should probably see a doctor or talk to a therapist. You've already suffered enough-don't put yourself through more than you need to.
Feel free to email me here at this site, I'd like to keep in touch with you
good luck
sherra

SkysMom

You are not alone. I am the 33 year old mother of a Hodkins Disease Survivor. My daughter was 6 when she was diagnosed 2 years ago this month! She went through 3 rounds of chemo and 14 days of radiation. She was Stage III. I live each day to the fullest now...just enjoy what you have....do not let long term overwhelm you. The first year out of treatment I was a complete wreck. Now I just am thankful for each day we spend together. I know you are young and want to plan out your whole future, but try to take it a step at a time. There are no guarentees with anything. I have stopped and thought about many other people who die suddenly, by either an accident or murder, and we are really lucky to be so aware of our luck to be on this earth. Try to reflect on how you have an opportunity to appreciate your days on earth. If anything were to reoccur, and it WON'T, you would know quicker than the average joe would. Yes, the tests are a bummer, but it is all worth it. Be proud of yourself and all you have endured. You are a strong person. Keep your head up and know you survived for a reason. :-)
Sky's Mom

mixups

You are not alone in fearing recurrence. I go through this feeling everytime I come up for scans. I was diagnosed with Hodgkin's in June of 2000 after surviving an entire year with cancer and doing college at the same time. Now, everytime I get sick with any respiratory problem, the fear of recurrence comes back. It's a perfectly normal feeling. After two years, the chances of it coming back are slim. However, taking care of yourself psychologically, nutritionally, and physically is thye best way to prevent recurrence. I will never feel "normal" again, but that's perfectly natural. It's something almost every cancer survivor has learned to accept. Relax....

mfoge

i believe we all have that fear i try to put it out of my but it is rough especially cat scan time i have been clean for two years i went through stem transplant and valve replacement surgery positive thinking is the key just take one day at a time i am 55 my faith helps me greatly.

movie_dad

with 14 years clean before reoccourance..from 19 yrs old to 32 yrs old life gets easier after about 5 years clean due to the possibility of it comming back does lessen. My case is one of only 3% of all lymphomas diagosed ( and I will win this time again ), and is somewhat different than the 1st time even with it being the same type. If you live in fear, then you do not live!!! Enjoy every day you are clean, if a scan or biopsy comes back dirty then fight it at that time. Don't live to die from this, just LIVE !!!! Life is too precious to run and hide from it. Get out and enjoy the smaller, hidden, and beautiful parts.

Yours in recovery and prayer
David

ps I do respond to personal e-mail on this site and check it at least 2x daily (even on chemo days)

PennyP

Hi Allison,
I am one year past chemo and radiation treatments, and am experiencing exactly what you are. Bad dreams. Every symptom (and there are many) give me a sick and panicky feeling. I think this is very normal. After all, how can this happen to you and you not react this way? I think part of the problem, is our family and friends cannot possibly understand the degree to which this diagnosis and disease saturates our every thought and our very being.
Just know - you aren't crazy and you're certainly not alone.
All the best,
Penny

Stacey03

I am 36 and was diagnosed last January. I finished Chemo and radiation last July. I am in the same boat. It seems like as each day comes I worry about reoccurence more and more. But this too shall pass. When it pops up in my head I just try to think about something else. I was diagnosed with HD - Stage II A. I would love to hear from other survivors.

Good luck,
Stacey

Josephine

I am about 15 mounths out of treatment, and I think about cancer every day, and to be honest, and blunt, it scares the **** out of me. I am constantly getting nightmeres. I am now seeing a counsolor and it is helping a lot. I am also on Zoloft, witch calms me down as well. You may want to check into getting a counsolor, my insurance pays for mine.

good luck,
Josephine Maharg.

tom29mi

Josephine said:

I am about 15 mounths out of treatment, and I think about cancer every day, and to be honest, and blunt, it scares the **** out of me. I am constantly getting nightmeres. I am now seeing a counsolor and it is helping a lot. I am also on Zoloft, witch calms me down as well. You may want to check into getting a counsolor, my insurance pays for mine.

good luck,
Josephine Maharg.

hi im 29 and and have went nearly five years since the end of chemo but ill tell you that there isnt a day that goes by that i dont think about it coming back.the worst thing is i lost my insurance and havent had a checkup in prob 3 years and i have two new lumps which def has me worried now.to top it all off my mother has just been diagnosed with breast cancer and is about to start radiation/chemo.her dr told her hed check me out and work something out on the payment which is nice so hopefully if it is back i can get to fighting it now instead of later.sometimes i want to say forget it and give up and if it is back then let it run its course but when i think that i think about all the people who are behind me.did anyone else feel the same way when they were rediagnosed or for the ones who are cancer free