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Cancer Related Cognitive Impairment (CRCI) after chemotherapy?

Posted by patient331 @patient331, Dec 8, 2023

We are interested in learning from others who have or know about CRCI during and after Breast Cancer treatment. I'm writing for my wife who is unable to communicate after her breast cancer treatment which included chemotherapy (51 weeks total) and radiation. She was a 100% normal functioning 62 year old woman until about 18 weeks into her chemotherapy, when she basically shut down cognitively (within a very short time). She became extremely withdrawn, she stopped communicating, stopped talking, does not answer questions. Her cognitive "shutdown" has persisted for almost 2 years. She has had extensive testing and evaluations by multiple doctors and specialists, psychiatric treatment, physical therapy, occupational therapy, speech therapy, multiple MRI's, lumbar puncture tests, and neuropsychological testing. Thru the process of elimination (not Alzheimer's, not dementia) it's suspected she has "lasting toxicity from chemotherapy". Who else has been put in this situation and what can we do? We have lived thru two years of pure hell with no light in sight.

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Mentor
Chris, Volunteer Mentor | @auntieoakley | Dec 10, 2023

@patient331 How devastating for you and your family. I personally have not heard of cognitive impairment to this level. You always read about and I personally have chemo brain (not as sharp or as fast as I used to be) but this is definitely another level. I know you said she had a ton of testing, has she been evaluated by someone who might have a specialty in this area?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 12, 2023

@patient331, when I first read the title of your discussion, I assumed that you were referring to the symptom commonly referred to as "brain fog" or chemo brain. Clearly your wife is experiencing more than mild cognitive issues.

This must be so frustrating and sad for you. Might I ask, how did you wife do in some of these evaluations? Was she non-verbal when consulting with specialists? Have you consulted with experts at Mayo Clinic?

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patient331 | @patient331 | Dec 12, 2023

A little more background: This is my wife's second occurrence of breast cancer. Her first occurrence was in 2009 and she was treated at Mayo Clinic. In 2009-2010 she had 18 weeks of chemotherapy, a lumpectomy, and radiation treatments. And yes she experienced "chemo-brain" then, however it was manageable, and nothing like she is experiencing now. In 2009-2010 it took about a year for her to get back to "normal" but she seemed to have some lasting effects. She was never 100% back to her old self. Fast forward to 2021, she was diagnosed with a recurrence of breast cancer (same breast, same location) during her routine mammogram at Mayo Clinic. That was total devastation because we knew immediately what we were facing. She had the same oncologist as in 2009. About the same treatment plan: 18 weeks of pre-surgery chemotherapy and 11 post-op chemo treatments, (Carbo, Gem, Herceptin) and again Mayo Clinic recommended a lumpectomy the same as in 2009. This time we even tried the "cold-cap" but it was totally intolerable for her and we only had two treatments before stopping the cold cap. She had a very rough time with chemotherapy. She was very very ill. She lost significant weight, was in extreme pain, had non-stop nausea and severe constipation. During her chemotherapy around week 15-18 she very rapidly became totally withdrawn and basically shut down cognitively and emotionally. She stopped communicating, stopped talking, would not answer questions, lost all emotions. No happiness, no anger, no sadness, no joy. Around week 20 of her treatment I began to ask for help from the matrix of caregivers at Mayo Clinic. Multiple e-mails, appointments, calls, pleas for help were not handled professionally or with understanding. I repeatedly asked "what is happening to her?" I asked if it was safe for her to continue with chemotherapy having seen what was happening to her brain. I feel we were not taken seriously and that no one cared. I wrote to the OPX office explaining our situation and asking for help but we were treated totally unprofessionally and gave up. Harsh sentiment, but true. We were told that it was OK to finish her treatment as prescribed, and she had 11 more chemotherapy treatments after her surgery and radiation. So the situation now is she has severe cognitive issues that have remained for almost two years. Yes, we have seen multiple specialists at Mayo Clinic. Thru the process of elimination it has been suspected that she has "lasting toxicity from chemotherapy". However MC is non-committal. We have also seen specialists at Barrow Neurological and she has had testing done there. They have said it's possible she has lasting issues due to lifetime chemotherapy, but we don't have a definitive diagnosis. There isn't a focal point or "advocate" for her (except for myself) at MC or anywhere else. We feel MC is a giant matrix of caregivers each operating in their own space. During her neuropsychological tests the testers/evaluators have commented that she is definitely slow and cognitively impaired, but they haven't had 40+ years living with her to understand the difference in her now, like I do. Thanks for listening.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 15, 2023
In reply to @patient331 "A little more background: This is my wife's second occurrence of breast cancer. Her first occurrence..." + (show)
@patient331

A little more background: This is my wife's second occurrence of breast cancer. Her first occurrence was in 2009 and she was treated at Mayo Clinic. In 2009-2010 she had 18 weeks of chemotherapy, a lumpectomy, and radiation treatments. And yes she experienced "chemo-brain" then, however it was manageable, and nothing like she is experiencing now. In 2009-2010 it took about a year for her to get back to "normal" but she seemed to have some lasting effects. She was never 100% back to her old self. Fast forward to 2021, she was diagnosed with a recurrence of breast cancer (same breast, same location) during her routine mammogram at Mayo Clinic. That was total devastation because we knew immediately what we were facing. She had the same oncologist as in 2009. About the same treatment plan: 18 weeks of pre-surgery chemotherapy and 11 post-op chemo treatments, (Carbo, Gem, Herceptin) and again Mayo Clinic recommended a lumpectomy the same as in 2009. This time we even tried the "cold-cap" but it was totally intolerable for her and we only had two treatments before stopping the cold cap. She had a very rough time with chemotherapy. She was very very ill. She lost significant weight, was in extreme pain, had non-stop nausea and severe constipation. During her chemotherapy around week 15-18 she very rapidly became totally withdrawn and basically shut down cognitively and emotionally. She stopped communicating, stopped talking, would not answer questions, lost all emotions. No happiness, no anger, no sadness, no joy. Around week 20 of her treatment I began to ask for help from the matrix of caregivers at Mayo Clinic. Multiple e-mails, appointments, calls, pleas for help were not handled professionally or with understanding. I repeatedly asked "what is happening to her?" I asked if it was safe for her to continue with chemotherapy having seen what was happening to her brain. I feel we were not taken seriously and that no one cared. I wrote to the OPX office explaining our situation and asking for help but we were treated totally unprofessionally and gave up. Harsh sentiment, but true. We were told that it was OK to finish her treatment as prescribed, and she had 11 more chemotherapy treatments after her surgery and radiation. So the situation now is she has severe cognitive issues that have remained for almost two years. Yes, we have seen multiple specialists at Mayo Clinic. Thru the process of elimination it has been suspected that she has "lasting toxicity from chemotherapy". However MC is non-committal. We have also seen specialists at Barrow Neurological and she has had testing done there. They have said it's possible she has lasting issues due to lifetime chemotherapy, but we don't have a definitive diagnosis. There isn't a focal point or "advocate" for her (except for myself) at MC or anywhere else. We feel MC is a giant matrix of caregivers each operating in their own space. During her neuropsychological tests the testers/evaluators have commented that she is definitely slow and cognitively impaired, but they haven't had 40+ years living with her to understand the difference in her now, like I do. Thanks for listening.

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I appreciate hearing the fullness of your journey. Most poignant is your next to final sentence "they haven't had 40+ years living with her to understand the difference in her now, like I do."

This must be so hard on you. I want to help connect you with others, etc. If you want to connect with other caregivers, there are two support groups specifically for caregivers here:
- Caregivers Support Group https://connect.mayoclinic.org/group/caregivers/
- Caregivers: Dementia Support Group https://connect.mayoclinic.org/group/caregivers-dementia/

You're welcome to follow one or both.

I hope you don't mind my asking so many questions. Feel free to only answer as you are comfortable.

Your wife's current cognitive abilities are a significant loss for you and you've invested so much time and emotion to support her and to find answers. Is acceptance possible?
You mention that your wife stopped communicating, does this include not communicating with you? Or have new (albeit challenging) ways of communicating emerged?

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