What’s the best care option for live alone senior during radiation?

Posted by jakefix82 @jakefix82, May 24 5:28pm

Biopsy results for suspicious Merkel Cell carcinoma on nose expected next week. I’m 75, live alone and wondered if it’s best to invest in temporary respite care at assisted living facility if it’s MCC and I need radiation. I’m familiar with Merkel Cell, my aunt died of it at 93. I’ve already inquired about respite care to have some of my ducks in a row if I get a positive diagnosis. I don’t have close friends or family to depend on. I do have a power of attorney, but he works and wouldn’t be able to stay with me much. Respire care offers transportation and would meet my needs while I’m there. Thanks!

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Frankly you make a good case for respire care if needed! It is helpful to see your thinking. Is there anything AGAINST respite care? I hope you don't end up needing it, but from what you've said it sounds suitable. Have you looked at it? Can you imagine being comfortable? If so, seems good.

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@mir123

Frankly you make a good case for respire care if needed! It is helpful to see your thinking. Is there anything AGAINST respite care? I hope you don't end up needing it, but from what you've said it sounds suitable. Have you looked at it? Can you imagine being comfortable? If so, seems good.

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Thanks so much! I’m going to look at one respite care/assisted living facility this weekend - talked at length on the phone with them today and with another facility close by as well. They listened to me and told me respite care seemed to be what I was talking about. They were both very reassuring, I could tell they’ve both worked with patients getting radiation and chemo. I felt very cared for while talking to both on the phone. Both have rooms available. I’ve always been an independent person and while my mind says I’m young, my body’s telling me differently. I have idiopathic peripheral neuropathy and have enough of a balance issue that I always use a grocery cart in most stores, tend to touch the corner of furniture pieces when walking in the house and need a railing going up and down steps. I keep a cane/portable stool in my car. I’m anxious that if I need radiation and try to stay home and “tough it out” that I might end up in a pickle if I feel nauseated, weak, fatigued, etc. And no one’s around until my friend (POA) can come in the evening. I have the money and hate to spend it, as respite care isn’t cheap. Hopefully it’s temporary. My POA can stay in my house off and on (actually, he owns it but doesn’t usually stay there), so I won't have to worry about not being home for a few weeks. I appreciate your response. I’m a little nervous if MCC is the diagnosis. My dermatologist hinted in a round about way after the biopsy, asking about my aunt who had MCC. I’ve had basal cell in the same area and during the fall had melanoma, stage 1 on my leg…it’s fine now. So I get frequent skin checks (am a redhead, though the color is unfortunately fading).

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I wish you all the best with this going forward. Your post made sense to me. I'm 70, ended breast cancer treatment a year ago. But I've been disabled since I was very ill at the age of 21. I have difficulty walking, and more. Although I've led a pretty adventurous life I also live with fear--what if I can't walk/drive when I need to, etc. My husband was here for me during treatment, but even though the treatment was not grueling I very much doubt I could have managed on my own, particularly food and errands. I actually considered a stint in assisted living at that point, and certainly would have done it if I was on my own. It gives support which in turn gives you some good options as to how to get through the day. Sending you all my best. If you feel like it, give us an update when you know more.

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@jakefix82

Thanks so much! I’m going to look at one respite care/assisted living facility this weekend - talked at length on the phone with them today and with another facility close by as well. They listened to me and told me respite care seemed to be what I was talking about. They were both very reassuring, I could tell they’ve both worked with patients getting radiation and chemo. I felt very cared for while talking to both on the phone. Both have rooms available. I’ve always been an independent person and while my mind says I’m young, my body’s telling me differently. I have idiopathic peripheral neuropathy and have enough of a balance issue that I always use a grocery cart in most stores, tend to touch the corner of furniture pieces when walking in the house and need a railing going up and down steps. I keep a cane/portable stool in my car. I’m anxious that if I need radiation and try to stay home and “tough it out” that I might end up in a pickle if I feel nauseated, weak, fatigued, etc. And no one’s around until my friend (POA) can come in the evening. I have the money and hate to spend it, as respite care isn’t cheap. Hopefully it’s temporary. My POA can stay in my house off and on (actually, he owns it but doesn’t usually stay there), so I won't have to worry about not being home for a few weeks. I appreciate your response. I’m a little nervous if MCC is the diagnosis. My dermatologist hinted in a round about way after the biopsy, asking about my aunt who had MCC. I’ve had basal cell in the same area and during the fall had melanoma, stage 1 on my leg…it’s fine now. So I get frequent skin checks (am a redhead, though the color is unfortunately fading).

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Hello@jakefix82 and welcome to the NETs support group on Mayo Connect. I see that you have connected with @mir123.

As she has said, you are doing some wise planning, in case chemotherapy and/or radiation is needed. When will you have the final biopsy report?

I look forward to hearing from you after your visit to the respite care facility. Will you post again?

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Will receive it Tuesday, post what I learn, and go from there. If this is a false alarm, great! Nevertheless, I’m glad I’m taking the time to learn about respite care services for a senior citizen who lives alone and may need temporary care. And I’m grateful for the support I’m getting from this forum…I don’t feel so alone! Technology is great! Thanks so much for reaching out!

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@mir123

I wish you all the best with this going forward. Your post made sense to me. I'm 70, ended breast cancer treatment a year ago. But I've been disabled since I was very ill at the age of 21. I have difficulty walking, and more. Although I've led a pretty adventurous life I also live with fear--what if I can't walk/drive when I need to, etc. My husband was here for me during treatment, but even though the treatment was not grueling I very much doubt I could have managed on my own, particularly food and errands. I actually considered a stint in assisted living at that point, and certainly would have done it if I was on my own. It gives support which in turn gives you some good options as to how to get through the day. Sending you all my best. If you feel like it, give us an update when you know more.

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Will do and thanks! I’m already amazed at how supported I’m feeling with folks like you on this forum. Didn’t realize how much these messages pull me gently out of my little introverted world.

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Hi - I was just diagnosed with invasive ductal carcinoma with neuroendocrine features from the nipple punch biopsy. Does this mean my breast cancer has spread or the breast is a secondary site? I received the call that I have cancer on Wed. May 22, 2024. I’m being treated at Duke Hospital in NC. I’m meeting with oncologist on Tuesday and having an MRI on the following Friday. I just need to know what this might mean. I want to be prepared. Because not knowing is rattling my nerves so bad.

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@hopeforacure

Hi - I was just diagnosed with invasive ductal carcinoma with neuroendocrine features from the nipple punch biopsy. Does this mean my breast cancer has spread or the breast is a secondary site? I received the call that I have cancer on Wed. May 22, 2024. I’m being treated at Duke Hospital in NC. I’m meeting with oncologist on Tuesday and having an MRI on the following Friday. I just need to know what this might mean. I want to be prepared. Because not knowing is rattling my nerves so bad.

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Hello @hopeforacure (I love the name you have chosen!) and welcome to Mayo Connect. On Connect, we have other members with a similar diagnosis. I would like you to meet @mir123 as well as @trixie123

You can read posts by them and other members who have NETs in the breast in the follow discussion group,
--NED of Breast
https://connect.mayoclinic.org/discussion/ned-of-breast/

As you read these posts, I would encourage you to post replies and ask questions about their experiences. There is so much we can learn from others.

My NETs surgeries have been of the upper digestive tract, but I have found a great deal of support here on Mayo Connect. As you approach the upcoming appointments here is a discussion and video about making the most of meeting with a new doctor.

Plan your conversation – Questions, concerns, symptoms, health history. For tips and tools see Tools for the Healthcare Visit - https://www.patientrevolution.org/tools

Do you wonder what questions the doctors would like to hear from you?
--- Video: Mayo Clinic experts share what they wish patients would ask:
https://www.mayoclinic.org/connected-care/mayo-clinic-experts-share-what-they-wish-patients-would-ask/vid-20487730

Was your breast NET originally found by a mammogram?

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@hopeforacure

Hi - I was just diagnosed with invasive ductal carcinoma with neuroendocrine features from the nipple punch biopsy. Does this mean my breast cancer has spread or the breast is a secondary site? I received the call that I have cancer on Wed. May 22, 2024. I’m being treated at Duke Hospital in NC. I’m meeting with oncologist on Tuesday and having an MRI on the following Friday. I just need to know what this might mean. I want to be prepared. Because not knowing is rattling my nerves so bad.

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Greetings to you. It seems most likely that the tumor originated in the breast, but worth double checking that by asking oncologist. The neuroendocrine features is comparatively rare, and a bit difficult to classify. I have a NET in my breast (removed surgically) but I have, if you believe it, four conflicting pathology reports! My oncologist and I both believe Mayo's is the accurate one. I've also been told it was just "features" and eventually no NET at all. To the best of my knowledge, what you have is treated like any breast cancer--with the usual aspects such as stage, grade, hormone status, etc. taken into consideration as regards treatment. NE features has a better prognosis than a full blown NET. I don't think you need a Neuroendocrine specialist, just a good oncology team. Here I'm just writing from my own experience as a patient--have no medical training at all but needed to understand my situation. So my guess is that although this is unusual it is not dire in and of itself--and of course you need a lot more information. Do stay in touch if you can. I was so shocked at first, and Connect continues to help me.

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I meet with the oncologist at Duke for our first meeting tomorrow. My daughter is going with me. Are there any specific questions I should ask?

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