1. < Neuroendocrine Tumors (NETs)

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.

hopeforacure | @hopeforacure | May 27 3:04pm
In reply to @hopeful33250 "Hello @hopeforacure (I love the name you have chosen!) and welcome to Mayo Connect. On Connect,..." + (show)
@hopeful33250

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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Hi everyone! The neuroendocrine features were with the diagnosis from a punch biopsy.

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Miriam, Volunteer Mentor | @mir123 | May 27 3:59pm
In reply to @hopeforacure "I meet with the oncologist at Duke for our first meeting tomorrow. My daughter is going..." + (show)
@hopeforacure

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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Hope this goes smoothly for you! Find out how you can ask more questions as they come up--email, portal, nurse navigator, etc. as questions tend to arise after an appointment too.

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1 reply
jakefix82 | @jakefix82 | May 28 1:54pm
In reply to @hopeful33250 "Hello@jakefix82 and welcome to the NETs support group on Mayo Connect. I see that you have..." + (show)
@hopeful33250

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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My biopsy report indicates it’s basal cell carcinoma, thankfully not Merkel Cell. I’ve been searching for an answer to the following question and haven’t come up with anything -

Is it advisable to have Mohs surgery (as, will I get a good cosmetic result) on an area (left side of nose, near nostril) where scar tissue exists from Mohs surgery performed fifteen years ago for basal cell carcinoma? This may be a recurring basal cell carcinoma, since it’s almost in the same exact spot. Someone told me about SRT (superficial radiation therapy) instead of Mohs. I’m now 75 years old, which might make a difference. Because there’s scar tissue present, I’m wondering what to expect from Mohs surgery. My Mohs surgeon interned at Mayo Clinic…she comes recommended by my dermatologist.

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 28 2:08pm
In reply to @jakefix82 "My biopsy report indicates it’s basal cell carcinoma, thankfully not Merkel Cell. I’ve been searching for..." + (show)
@jakefix82

My biopsy report indicates it’s basal cell carcinoma, thankfully not Merkel Cell. I’ve been searching for an answer to the following question and haven’t come up with anything -

Is it advisable to have Mohs surgery (as, will I get a good cosmetic result) on an area (left side of nose, near nostril) where scar tissue exists from Mohs surgery performed fifteen years ago for basal cell carcinoma? This may be a recurring basal cell carcinoma, since it’s almost in the same exact spot. Someone told me about SRT (superficial radiation therapy) instead of Mohs. I’m now 75 years old, which might make a difference. Because there’s scar tissue present, I’m wondering what to expect from Mohs surgery. My Mohs surgeon interned at Mayo Clinic…she comes recommended by my dermatologist.

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Hello @jakefix82

Thanks for the update regarding the biopsy report. As this is now diagnosed as basal cell carcinoma, you might want to consider posting this question in another Connect discussion thread at this link,
--Is it Necessary to Remove Basal Cell via MOHs
https://connect.mayoclinic.org/discussion/is-it-necessary-to-remove-basal-cell-via-mohs-what-are-alternatives/
In this discussion group, you will find many others who have faced this same decision. Have you had an opportunity to discuss this with the surgeon?

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hopeforacure | @hopeforacure | May 29 12:59pm
In reply to @mir123 "Hope this goes smoothly for you! Find out how you can ask more questions as they..." + (show)
@mir123

Hope this goes smoothly for you! Find out how you can ask more questions as they come up--email, portal, nurse navigator, etc. as questions tend to arise after an appointment too.

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Hi @mir123. Thank you for reply! It went ok. She wasn’t able to stage the cancer because there wasn’t enough tissue from the biopsy. She said even though I have neuroendocrine features she would treat me with breast lumpectomy and biopsy a sentinel node. I have an MRI on Fri. morning. Dr. said we are just at the tip oh the iceberg and then said “tip of the nipple”…. 🤨 I am having some pain in my left breast and underarm but the worst is the extreme fatigue and very weak. She said that it is very rare to have invasive ductal carcinoma along with NET. Only 1% of all breast cancers have this diagnosis.

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1 reply
Mentor
Miriam, Volunteer Mentor | @mir123 | May 29 2:40pm
In reply to @hopeforacure "Hi @mir123. Thank you for reply! It went ok. She wasn’t able to stage the cancer..." + (show)
@hopeforacure

Hi @mir123. Thank you for reply! It went ok. She wasn’t able to stage the cancer because there wasn’t enough tissue from the biopsy. She said even though I have neuroendocrine features she would treat me with breast lumpectomy and biopsy a sentinel node. I have an MRI on Fri. morning. Dr. said we are just at the tip oh the iceberg and then said “tip of the nipple”…. 🤨 I am having some pain in my left breast and underarm but the worst is the extreme fatigue and very weak. She said that it is very rare to have invasive ductal carcinoma along with NET. Only 1% of all breast cancers have this diagnosis.

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Thanks for checking in! I hope the MRI goes smoothly. Strangely, my NET in breast has no definitive stage--I've been told both 2 and 3. I hope your fatigue lifts--try to rest as much as you can, although I have found a bit of mild exercise helps as well. Take care.

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