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Anyone have cancer with unknown primary?

Cancer | Last Active: Nov 9 1:19pm | Replies (163)
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@mbkcanada

An update: just finished 30 radiation sessions on my neck alongside 3 chemo sessions (day 1, 15, 30). Had neck dissection previously.

I had reached out for second opinion and the pathology
results changed. Still unknown primary but instead of adenocarcinoma, it is small cell neuroendocrine carcinoma involving the lymph node. The 'differential diagnosis ' is metastic small cell carcinoma of the lung'.
I'll get more chemo in a few weeks with a etoposide and cisplatin. 3xweek every 3 weeks repeated 4x. My husband and I are now on the same 3 week chemo rotation.

Anyone know if cool cap works on this type/combo?
Hairloss is pretty low on my concern but everything is worth asking.

Sounds like for a CUP it's an aggressive type.

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Replies to "An update: just finished 30 radiation sessions on my neck alongside 3 chemo sessions (day 1,..."
Colleen Young, Connect Director | @colleenyoung | Aug 5 9:29pm

@mbkcanada, you may wish to join the discussions in the Neuroendocrine Tumor (NETs) support group here: https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/

There is also a monthly meeting on Zoom led by a Mayo Clinic social worker that you can participate in. Neuroendocrine Cancer Zebras meet monthly on the first Thursday every month from 5:30 to 7:00 p.m. Eastern time. See info for the Sept meeting here: https://connect.mayoclinic.org/event/neuroendocrine-cancer-support-group-meeting-16/

Lastly, here are discussions on cold caps: https://connect.mayoclinic.org/search/?search=cold+cap

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Teresa, Volunteer Mentor | @hopeful33250 | Aug 6 7:09am

Hello @mbkcanada,

I would like to join @colleenyoung in welcoming you to Mayo Connect and also in inviting you to join our NETs support group. I see that Colleen gave you some links to the group where I am a member and mentor. I'm sure the other members of the NETs group would be interested in having you share your experience. You will find them to be a very supportive and encouraging group of patients with NETs.

I was diagnosed with NETs over 20 years ago and I understand that this is a rare type of cancer and can be confusing. Will you take a look at the NETs support group?

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