Support for Young Adult with carcinoid tumor on ovary

Posted by rowlandsb @rowlandsb, Sep 1 7:48am

My daughter is 21 and has recently been diagnosed with a carcinoid tumor on her ovary. I am looking for any research into carcinoid tumors in children and young adults and/or carcinoid tumors on the ovary. I am also wondering whether there is anyone in this group who is of a similar age and would be willing to correspond with my daughter to provide some mutual support. Any help would be much appreciated; thank you.

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

@rowlandsb, I have some options for your daughter. She is welcome to join Mayo Clinic Connect and follow the NETs group to connect with others with a similar condition. But as we know connected with other people living with cancer at her stage of life is really important too. We also have a group for Young Adults here:

– Adolescent & Young Adult (AYA) Cancer https://connect.mayoclinic.org/group/adolescent-young-adult-aya-cancer/

Mayo Clinic social workers also host a monthly Zoom support group for young adults with cancer the first Thursday every month from 6- 8 p.m. Arizona time. She is welcome whether she is a Mayo patient or not. The next meeting is today at 6pm PT (9pm ET, 8pm CT). See more details here:
– YA, Me Too: Young Adult Cancer Support Group Meeting https://connect.mayoclinic.org/event/ya-me-too-young-adult-support-group-meeting-116/

I think those are good places to start.

And mom? How are YOU doing?

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@colleenyoung

@rowlandsb, I have some options for your daughter. She is welcome to join Mayo Clinic Connect and follow the NETs group to connect with others with a similar condition. But as we know connected with other people living with cancer at her stage of life is really important too. We also have a group for Young Adults here:

– Adolescent & Young Adult (AYA) Cancer https://connect.mayoclinic.org/group/adolescent-young-adult-aya-cancer/

Mayo Clinic social workers also host a monthly Zoom support group for young adults with cancer the first Thursday every month from 6- 8 p.m. Arizona time. She is welcome whether she is a Mayo patient or not. The next meeting is today at 6pm PT (9pm ET, 8pm CT). See more details here:
– YA, Me Too: Young Adult Cancer Support Group Meeting https://connect.mayoclinic.org/event/ya-me-too-young-adult-support-group-meeting-116/

I think those are good places to start.

And mom? How are YOU doing?

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Thank you for taking the time to respond, it is much appreciated. I will get her to join the young adult group. It might be difficult for her to join the online support group given the time difference as we are 8 hours ahead (we live in the UK).

I'm doing okay thank you; I'm taking some comfort from the fact the cancer is slow growing and should have a better idea of prognosis sometime in the next month. The national health system in the UK is buckling under the volume of referrals.

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I’m so sorry for what your young daughter is going through. My 19 yr old daughter is quite Ill… do you mind sharing some of your daughter’s symptoms that led to them finding this?

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@smccoll

I’m so sorry for what your young daughter is going through. My 19 yr old daughter is quite Ill… do you mind sharing some of your daughter’s symptoms that led to them finding this?

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Hi, I'm so sorry to hear your daughter is unwell too. My daughter was having severe period-like pains in her lower right abdomen. She had an ultra scan and they found she had a cyst on each ovary. The cyst on her right ovary turned out to be a normal functional cyst, but the one on her left ovary was removed as it didn't look normal and she was subsequently diagnosed as having a carcinoid stromal tumor which I've been told is very rare in itself, let alone for someone of her age.

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@rowlandsb

Thank you for taking the time to respond, it is much appreciated. I will get her to join the young adult group. It might be difficult for her to join the online support group given the time difference as we are 8 hours ahead (we live in the UK).

I'm doing okay thank you; I'm taking some comfort from the fact the cancer is slow growing and should have a better idea of prognosis sometime in the next month. The national health system in the UK is buckling under the volume of referrals.

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Hello @rowlandsb,

I'm sure you are concerned about your daughter's recent diagnosis. If you are comfortable sharing more, was the ovary removed? Is she feeling better since her surgery and has her pain decreased?

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Hi @hopeful33250
She is having her left ovary removed this Friday. Her pain is on the right-hand side but thankfully there doesn't seem to be any sign of any tumors on her right ovary. It would seem that her pain is unrelated to the carcinoid tumor they removed (the surgeon left the ovary in at this stage as she didn't think it was cancerous) so it was by chance they found it.

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@rowlandsb

Hi @hopeful33250
She is having her left ovary removed this Friday. Her pain is on the right-hand side but thankfully there doesn't seem to be any sign of any tumors on her right ovary. It would seem that her pain is unrelated to the carcinoid tumor they removed (the surgeon left the ovary in at this stage as she didn't think it was cancerous) so it was by chance they found it.

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Hello @rowlandsb

My thoughts go with you and your daughter as she has surgery on Friday. I hope that all goes well for her.

As this is a rare diagnosis, I found some information on the National Institute of Health website titled.
-Ovarian Stromal Carcinoid
https://pubmed.ncbi.nlm.nih.gov/35528006/
As I read this, I noticed that this type of carcinoid has thyroid components.

Has your daughter had any other scans (such as Gallium 68) to look for any other instances of carcinoids? If not, it might be wise to inquire about having further testing.

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Thank you @hopeful33250, it is much appreciated. She has had a CT scan and a Tektrotyd (octreotide) scan of her thorax and abdomen and there doesn't seem to be any other tumors. Is the scan you mentioned, different?

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@rowlandsb

Thank you @hopeful33250, it is much appreciated. She has had a CT scan and a Tektrotyd (octreotide) scan of her thorax and abdomen and there doesn't seem to be any other tumors. Is the scan you mentioned, different?

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@rowlandsb

One of the best scans for detecting carcinoids is the Gallium 68 Pet Scan. Here is some information about it from one of Connect's discussion groups,

– 68Ga DOTATATE Positron Emission Tomography (PET) Now at Mayo Clinic
https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/
You might check with your daughter's doctor and see if this test is available in your locale.

Will you post again with any questions?

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