Having a lot of anxiety regarding cancer treatments

@loveisblind Robin, many of us here on Mayo Clinic Connect have been through treatment of chemotherapy and radiation therapy. I’m going to share what has been shared with me. Hope. Hope can be thought of as optimistic because you have a plan in place. Optimism without a plan or what a person can do to make a positive change is nice but in my opinion is rather empty.

Are you the one with a plan for chemotherapy and radiation? Or is this a concern for a loved one? I was nervous before radiation therapy and wondered too, what if it doesn’t work? What if I have all those side effects that the radiation oncologist and nurse informed me about. As it turned out I had very few side effects other than a little fatigue, some loss of appetite and occasional diarrhea (not every day). I kept up my workouts and I walked every day. I kept doing what I had been doing before I started radiation therapy. I listened to my body.

I know people diagnosed with Stage 4 colorectal cancer who survived. Yes, it’s a very scary diagnosis as I read in our bio that you were diagnosed with Stage 3 rectal cancer. Would you like to get another opinion on treatment? That’s an option and you could ask for your biopsy (likely on slides in pathology) to be sent to another cancer care center for another opinion. Are you being seen at a major comprehensive cancer center such as MD Anderson (Texas), Mayo Clinic or Sloan Kettering (NYC)?

I've had radiation 2x and watched a friend go through chemo the same number of times. Neither is a picnic, but they're both a *lot* better than they used to be.

SBRT (the most-common current radiation treatment) is very precise: instead of slapping a lead-lined apron with a cutout over you and blasting, the machine turns round and round, entering from different directions guided by a live CT scan so that it hits a tiny and very precise spot. The superficial burns (etc.) people used to experience are mostly a thing of the past, through you can still get side-effects (I had some minor bladder damage where it touches my prostate). There's an even-newer radiation treatment called "proton beam radiation" that does less damage on the way in, but it's very expensive and not widely available yet (overall survival is the same, but it's valuable for avoiding collateral damage, e.g. for children with a lot of growth ahead of them and/or near the brain).

My friend recovered much faster from chemo each time than I'd expected based on depictions in movies and on TV, and didn't even lose his hair the second time. He was able to be out and about a bit even during the therapy, and was quickly back to normal afterwards. Modern chemo doses are often lower and the chemicals are more targeted than they used to be. That gives me hope that if my advanced cancer keeps progressing, chemo won't be as bad as I'd feared.

There are also new treatments like Pluvicto (for prostate cancer) that deliver radiation directly to prostate-cancer cells via medication. It's being used when conventional radiation and chemo fail, as an extra line of defense.

It's natural to be afraid — I was (and still am) — but this isn't our grandparents' cancer. Things are way better than they were even 5–10 years ago.

@loveisblind Robin, welcome to Mayo Clinic Connect. We're here to support you!

As @naturegirl5 mentioned, so many of us have been where you are. I haven't had radiation for my cancers. I have had surgery and chemo. Drug manufacturers and our medical team are required to talk to us about "possible" side effects. I use quote marks here, because not all of us will experience all of those side effects. Maybe just a few, maybe none to speak of. We each have our unique health journey, and our body's response to treatment.

It's tough to be brave and strong. Reach out to us. Send me a private message if you need to, please.
Sending gentle hugs,
Ginger

God Bless my Blue Cross & Blue Shield health insurance company from saving me from the Mayo Clinic and Keytruda. Once they cured my stage 3a lung cancer with Ablation, Chemo, Immunotherapy, and taking out part of my lung, I thought treatment worked and I was 100% cancer free and that I was done driving to the Mayo for a while. However, my overzealous Oncology Nurse Practitioner wanted me to start Keytruda Infusion on the 2nd January. Keytruda would be 90 minutes in the Chemo chair with $14,000 worth of drug pumped into my arm every 21 days for the entire year, just in case. I was dreading it, lots of side effects with some of them being diarrhea & death. I left the house at 1am on the 2nd to drive up to the Mayo for a couple of CT scans and blood tests and other BS before my 1st Keytruda infusion. I met with my NP at 10:45 for a check up before I started the Keytruda at 12:45. BC&BS turned down the $250,000 worth of treatments at 10:30 that morning after seeing my CT scan and the path report stating I was cancer free. Once again, thank God for my insurance company for saving me from a year of unnecessary hell. Back in June when I met with my first of many doctors at the Mayo, I was told that it is ALWAYS about the money and to be careful. Unfortunately I am not smart enough or strong enough to tell the Mayo Clinic NO, you have done enough, I am cured and please stop treatments. We will now be doing some RV traveling this year. GOD is GOOD...

@mrnootz, you are the CEO of your body and care team. You have the choice when to say it's enough. But I understand the pressure that a patient can feel when presented with all the options. For example, my dad went into an oncology appointment with the intention of not taking chemotherapy when his cancer recurred. We were surprised when he chose to continue treatment for a time. After 6 months, he decided to stop. His care team and family accepted each choice. Both were right for him at the time.

Thank goodness you had options. Not all cancer stages have curative options. You might be interested in this related discussion:
- Going my way: Decided to stop cancer treatments
https://connect.mayoclinic.org/discussion/going-my-way/

Hi Robin @loveisblind, I see from your bio in your profile that you have rectal cancer. I think you might appreciate following @martin77's story in this discussion in the Colorectal Cancer Support Group:
- My journey with rectal cancer: What's your experience?
https://connect.mayoclinic.org/discussion/tumour-position/

Your fear is normal. It sounds like you need more information to help turn that fear into an informed decision. In addition to gathering experiences from fellow cancer patients like you're doing here, you will also want to ask questions of your cancer team. They can tell you more about possible side effects that are more likely for you based on location of the tumor, stage, your current health status, co-existing conditions you may have, age and, of course, your personal preferences. For example, my dad also had type 2 diabetes, so the chemotherapy protocol was adjusted for his colorectal cancer to reduce the risk of permanent neuropathy.

I would ask your team questions like:
- What treatments do you recommend from me?
- What are the benefits and risks of each treatment type?
- What is the goal of each treatment?
- What is the likely progression of my cancer if I choose not to do further treatment?
- What is palliative care and how can it help manage side effects of treatment?
- How does palliative care help if I choose not to do treatment, for example with pain management?

Robin, you are brave. You may not be feeling strong right now and that's ok. Equip yourself with information. Did you already have surgery? What stage is your cancer?

God bless you all and thanks for your stories. I’m new to this having been diagnosed with 1b lung cancer and having an upper right lobectomy. My oncologist prescribed 80 mg Tagrisso once a day for three years. I’m three weeks in to it and it’s very strong and I don’t like the way it makes me feel. I worry it’s destroying my body. There is a 40mg Tagrisso pill also but I’m also fearful if I go to that lower dosage the cancer has a better chance of returning. Does anyone have any experience with Tagrisso and the dosage options. I can’t live like this for the recommended three years.

So sorry for what you're feeling, but also, I'd be more concerned if you weren't scared. This is a challenging journey that we're all on, and fear is a normal human reaction to it.

In my case (stage 4 prostate cancer), it took over a year for me to get used to it. That doesn't mean I'm not scared still, but it's become a part of who I am, rather than a separate outside thing that's threatening me. The psychologists probably have a word for that ("integration" or "reconciliation" something like that?) but I'm not one, so I don't know. 🙂

One thing that helped me early on, when I was in hospital for a few months unable to go home (or even leave my bed for the first two months), was to connect my "little dots of joy" every day. Did I have a good breakfast? A nice video call with my brother? A good chat with the night nurse when everyone else was asleep? Read an interesting book? See the sun out the hospital window? Have a laugh with my hospital room mates?

I found that listing the dots of joy every day in a message to my family eventually rewired my brain so that life as a whole started to joyful again most of the time, instead of doomed and hopeless. I found out afterwards that other people call this a "gratitude journal," and I can affirm that it really did work for me, and is still working 2 1/2 years later.

Just remember: brave people are the ones who feel afraid but go ahead and do it anyway. The word for people who don't feel fear at all is "delusional".