I am not grateful to my oncologist and care team
I am facing my last treatment for triple positive breast cancer next Thursday. I had heard that ending treatment can be difficult and I have been trying to prepare myself by building other support outside my care team. However, I find that the biggest problem is the reckoning with what has happened to me. There have been 5 components of treatment: lumpectomy, chemotherapy, immunotherapy, radiation, and an aromatase inhibitor. Each of them has taken a piece out of me, and I find myself incredibly diminished. I have neuropathy - my ears ring, my lips and tongue tingle, the palms of my hands and bottom of my feet are numb and sensitive and my right leg hurts. I had an outside consultation last week, and that oncologist told me the sensation would not be coming back and all I could do is manage the pain. My oncologist keeps telling me to wait and see. I have pain in my breast that is unpredictable. It comes and goes and sometimes I have sharp pains. My nipple is very sensitive. It is so distressing that I have mentioned to my nurse that I would consider having the breast removed. No response or help, which I interpret as there is nothing they can do. I have lymphedema, not too bad, but it contributes to the breast pain and requires daily self-care. I have joint pain from the letrozole. It is manageable, if that was the only thing, but it is one more thing added to everything else. My hair is the least of my worries, but it grew back gray after the chemo and my hairdresser (and the outside oncologist) told me that the color won't come back. My care team kept telling me it would revert to my previous color. I lost my best friend of almost 40 years who I discovered is constitutionally incapable of providing comfort and reassurance and took offence when I asked her to stop mocking my fears. To be honest, I had known there were some problems there for a while. Still, it has been distressing, and it's a loss. All of this contributes to a sense that I don't know this person I have become, and what I do know of her, I don't much like. But the worst is that I cannot maintain my home (I live alone) and I am struggling at work. Between the ear ringing and the breast pain I cannot concentrate on work. When I started treatment, I told my team that my goal was to be able to continue to live independently, but now that is at risk. I don't have the financial resources to have someone do the things around the house I can no longer do, like yardwork. I don't want to see my care team next week. Physically I look good. My labs look good. The oncologist and nurses all tell me I am doing well. None of my deficits are visible. But they are painful and debilitating. I am angry that this has happened to me, and although I am aware that they didn't "do this to me," I can't pretend that I am OK with my outcome. Are my care team expecting me to be happy that my treatments are over? I think other people are expecting some sort of joy from me, but there is none. I'm devastated.
Comments
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Hi @mgradie -
I am so very sorry for all that you are going through. I think you are right. Breast Cancer does take a 'piece' of something from all of us. Prior to dx, it is something that happened to others and most of us never thought it would happen to us. It is frightening and all the treatments and surgeries can be overwhelming. It is also hard for those who have not been through it to understand.
Could you maybe ask your care team at your final appointment if they can refer you to a pain management provider? If the physical pain is not going away, perhaps there are providers that can give you better ways of managing that pain, to at least lessen it. I am pretty sure there are providers who specialize in that. It also sounds like you are dealing with a lot of psychological stress, which is also 'normal' for all that you have been through. Could they recommend a specialist with whom you could discuss that? If your care team is not assisting you with 'moving forward' in your life, do you have a primary care provider who might help you or refer you? They maybe would also be aware of programs available in the community or church groups that offer assistance with things like yardwork. Do you have friends or family who could assist you with any of these things?
I don't know if I have helped offer any solutions for you, but just thought it good to respond so you know that we all 'get' it and care about what you are going through.
Take care.
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Hi @mgradie, I’m sorry that you are dealing with the aftermath of treatment. In order to kill the cancer we are given toxic treatments which damage other parts of our bodies. Some of those issues improve with time but others may not. In my experience the cancer team treats the cancer and does not deal with the problems that follow. However, they will refer you to somebody else. Ask for a referral to pain management, a LE therapist and/or physical therapy. My PCP was not much help since she doesn’t seem to deal with many cancer patients.
Mandy has made many good suggestions. You should also contact your hospital’s social work department to see what programs might be available for you. While some people return to something close to their pre cancer lives others have to adjust to a new reality. I’m one of those whose life has been changed by treatment SEs. Over time I’ve learned to accept that and keep moving forward. All the best.
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Hi @mgradie,
We echo the sentiments of mandy and maggie. We hear all too often how breast cancer diagnosis and treatment completely upends one's life, and the struggle to find a "different normal" while managing side effects and all the changes in your life is very real.
Good suggestions above, but you might also want to ask for a referral to palliative care:
"You might think of palliative care as end-of-life care — the two are often mistakenly linked. As a result, many people don’t think it’s an option for them, and they miss out on receiving care and support that can help them feel better.Simply put, palliative care, which is also sometimes called supportive care, helps manage symptoms and stress. It’s an additional layer of support that doesn’t replace any other medical care you receive. Instead, palliative care adds extra symptom management, and provides emotional, legal, spiritual, and social support.
Unlike hospice, you qualify for palliative care regardless of your life expectancy. You can begin it as early as you receive a breast cancer diagnosis. And you can receive palliative care while getting treatment for breast cancer — and even if your breast cancer goes into remission."
Here's also a podcast that might be helpful all about Palliative Care:
Also, you might find some of our recent webinar recordings helpful that focus on Mental Health and Breast Cancer:
In addition, we encourage you to sign up for our upcoming webinar: Real Talk: It's OK to Not Be OK.
This podcast episode might also be helfpul to you:
We're so sorry for all you're dealing with. If you'd like to discuss these concerns and how to cope with them live with others, you might be interested in joining one of our free, weekly Bonded by Breast Cancer Virtual Support Groups - a meeting for those out of active treatment and figuring out how to wrap their minds around life after treatment.
We hope you find this helpful. Sending gentle hugs.
—The Mods
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Thank you so much for all your comments. All of them are helpful. Writing that post was cathartic for me (it just came out of me, and I am not a writer) and I feel much better today. I am not in pain, though I know the pain will return. What I forgot to say was that I have an excellent care coordinator through my employer who has already made some of those suggestions and is available to help me find the resources I need. I have a great therapist. Unfortunately, my primary care clinician, a wonderful nurse practitioner, is retiring. So, I will need to do a search for another, a scarce resource. I think my major struggle form here on will be to let go of the idea that I will completely heal. The ability to heal seems to be tied into my identity in a surprising way. Recognizing that is the first step to acceptance, and perhaps a new definition of healed.
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