Regret..

As rough as treatment was and as unpleasant as some of the long-term side effects are, I do not regret at all having chemo/rad.  It saved my life.  I do feel that I had had cancer for quite awhile before I was diagnosed and perhaps if it hadn't been found, I could have continued to live for quite awhle, in denial that I actually had something so sinister and serious.  But then what?  As we know, ignoring symptoms is the reason many people are not diagnosed in time for a good outcome.  I am grateful for every day and try to live with no regrets.

Martha

TraceyUSA said:

Interesting question

I do not regret having the treatment but I sometimes wonder if it was entirely necessary.  I was T2 or 3, N0, M0 and my tumor was removed prior to treatments.  The PET scan I had prior to treatment was "clean" even in the tumor area, so I often wonder if it was necessary to treat so aggressively.  I can't say that I completely questioned this at the time but was advised treatment was necessary because of biopsy results.  Having to do it again, I think I would question the chemo/radiation necessity more thoroughly.  But if necessary, yes, I'm pretty sure I'd do it again as the side effects have been very managable for me up to this point.

I will never forget the phone call when they told me I had cancer.  I fell into the bed as she rambled on and in that moment I realized how much I loved myself, my life and everything in it.  I went to City of Hope for a second opinion a few weeks later.  I remember every word that doctor said to me and I am so grateful that I did.  On the day of the second infusion when I asked about the second round of mitomycin and why they had not administered it, they said it was no longer necessary.  I remembered those doctors words, don't fall thru the cracks, do not get shorted on any rounds of chemo, make sure you went to all radiation treatments, take no breaks.  I demanded the mitomycin that day!  Prior to my diagnosis I would never have imagined accepting chemo never mind demanding more!  I am so happy to be alive, even though I suffer greatly every day with pain, gas, and on and on.  Life is really a gift.  But there are days  I question was it worth it?  Thanks to God I get thru these difficult days and you will to.  Lorikat once I reached the five year mark, my brain fog cleared and I have a lot more energy.  This has made a tremendous difference in my quality of life.  Be patient and I am sure you will see improvements as slow as they might be.

Lorikat said:

I agree.  Glad to be alive...

I agree.  Glad to be alive...  Do not think I would have radiation again.

 

well,  i do NOT think that i would do all the same tx again if they said that it was back and you need chemo and radiation all over again....i might try just chemo but definitely not radiation to that area......but i am glad that i was ignorant when first diagnosed and did what they said to do ....i am just now getting better with BM's (post 6 years )......i still have trouble down there with inflammation and bumps etc.....hope to never have to make the decision ......sephie

I was stage 4 when diagnosed.  It took many months for the doctors to figure out I had cancer.  I was severly burned, hospitalized because of many problems from chemo and severe burns.  Surgery to remove part of my liver.   Would I do it again, ABSOLUTELY!!!!, it saved my life.  I wouldn't be here if I didn't have treatment.  I was to young not to fight, not only for myself but for my family

You know...I think I would not.  The Drs at the time "threatened " me with surgery and a certain ireversable colostomy if I didn't do chemo and radiation. .  In retrospect, my bum doesn't work right now anyway, I would opt for the surgery.  I think the radiation did an amazing amount of damage.  Yes, I'm glad to be alive and something had to be done, but I think the other route would have had fewer long lasting effects.

Lorikat said:

thank you for your answer....

thank you for your answer....  I have heard that answer before....  But?  Who really knows?

I do not regret doing the best I knew to do at the time. Would I again, yes, I would and I have, and would yet again! As far as some thinking a colostomy is "instead" of other treatment.....it is often "along with" other treatment, and have done that as well with little regret.

That being said, everyone needs to do what feels best for them. All we can do is gather information, though during a difficult time not easy to do, then make a decision and not look back, but keep moving forward. What is right for me at one time in my life is not always what is right for another at a time in their life, but, living with regret does not ever seem right. So, please have no regret!

katheryn

You've gotten an interesting array of answers. I had stage 3a or 3b (groin nodes were slightly suspicious on PET scan, but never biopsied - radiation covered them). When I went to the infusion center for orientation and to sign consents, I wouldn't sign until someone explained to me about my odds of recovery. The radiation oncologist came racing down the hall to the unit to reassure me that he had everything under control and people at my stage recover with increasing frequency, etc. He was so concerned and worried, that I had to laugh. I spoke with 3 other doctors about accepting treatment (primary, oncologist, colorectal surgeon) who all looked at me aghast: "Of course you are getting treated!" Also, my husband pleaded with me. So I signed the consent forms.

Now, there is not a time when I can forget that I spent 2014 enduring cancer. I carry constant souvenirs of my experience in the form of scarring, fissures, incontinence, and diminishing pain all of my anal canal AND a port scar. My memory has been impinged upon. I now shudder when I even drive past a hospital. As soon as I hear that someone has cancer, I flush with empathy. My life has been thoroughly transformed.

Would I repeat treatment knowing what I know now? I don't know. With all the new therapies on the horizon that have fewer and fewer side effects, one thing I can positivly say is that we all had cancer too soon!

Missgrace said:

How do you know?

Some of you say you would have the chemo again but not radiation. Also, many of the delayed side effects are blamed on radiation. How do you know that radiation is at fault and not chemo? Just curious.

There are immediate side effects and long term effects known for each of the chemotherapy drugs, knowledge gained through multi-staged clinical trials and experience. The same is true with radiation.

I had radiation along with 2 courses of 5-FU and Mitomycin. The radiation was what knocked out my cancerous lesions. The chemos were meant as helpers to make the radiation more effective and to scout stray cells that radiation may have missed. As horrible as it was and as annoying as it continues to be, it was what did the most to zap the cancer. I don't know how different treatment would have been if I'd refused radiation or what the survival rate is with chemo only for my particular cancer scenario. Before treatment started, the tumor painfully erupted through my skin near my anus. Within about 2 weeks of receiving radiation, the external tumor was totally gone, so I knew it was working.