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I'm a mom to a 22 year old daughter with diffuse sclerosing papillary thyroid cancer.

I'm a mom to a 22 year old daughter with diffuse sclerosing papillary thyroid cancer.

Posted by svenne on Jan 16, 2019 11:47 pm

I just found this site, need to talk to other parents of adult children who have recently been diagnosed. M, my daughter had an ultrasound of her neck, because she had a lump behind her right ear at the jawline, her GP sat us down and explained we needed to see an ENT asap, the same day she had a fine needle biopsy and blood tests done. That was oct 2018, dec 19th she had the whole thyroid and 11 lymph nodes taken out, 5 of the 11 had cancer in them. She seems to be doing well with the synthetic thyroid hormone so far, and has recovered well from the surgery. We just learned the name of the cancer she has this week, diffuse sclerosing papillary thyroid cancer.

Re: I'm a mom to a 22 year old daughter with diffuse sclerosing papillary thyroid cancer.

Posted by svenne on Jan 17, 2019 12:16 pm

We are waiting to see her doctor again Feb 4rth, waiting and not knowing what the next steps are is difficult. I worry about all the what ifs...

Re: I'm a mom to a 22 year old daughter with diffuse sclerosing papillary thyroid cancer.

Posted by ashcon on Jan 17, 2019 2:33 pm

Hi svenne‍ 

So glad that you found this site and have reached out here.
I am so sorry to hear of your daughter's diagnosis - my heart literally jumped in sympathy when I read your post as I have a daughter about the same age (23) and I can only imagine the fear and anxiety you and others close to you must be feeling.

I'm glad she has recovered well from the surgery and is handling the thyroid meds ok.  Is she on Synthroid?

There are some wonderful options for resources out there in case you don't get much response here, such as:
1. The Social Worker at the Cancer Centre where your daughter is being treated.  This is someone that is available to your daughter, as well as to you and other family members and caregivers.
2. Cancer Information Specialist.  They are like a hub of information and referral recommendations. I found them to be very friendly and helpful.
3. I'm sure there are some fabulous books out there too.  If she is a reader, perhaps you can take your daughter to the local Indigo and let her (and you!) indulge in whatever books you find that will guide you both through this.

I have a friend who got her breast cancer diagnosis when she was just 23.  She told me that the hardest part for her was watching her friends go about their 'normal lives' (school, dating, gap year trips, etc) while her life was put on hold, nay threatened, by this stupid disease.  There was a fair amount of justifiable anger at the time, but she is much better now, 7 years later.

Though we want to 'make everything OK' for our kids, we can't in a case like this, but we can make it OK to make sure she has the coping skills and tools she'll need.
How is your daughter holding up?   Is she able to vent and talk to someone who "gets it"?

Sending a mother's love to both you and your daughter.

Re: I'm a mom to a 22 year old daughter with diffuse sclerosing papillary thyroid cancer.

Posted by Sammi on Jan 18, 2019 2:04 pm

svenne I‍ was so sorry to read about you daughter.  Waiting is the one of the hardest parts and I hope that Feb. 4th comes quickly for you both.
My son was diagnosed at 17 a few weeks before his 18th birthday with stage 4 metastatic rhabdomyosarcoma.  You have probably never heard of it and neither had we. He is now 22 and doing great. It was a terrible, scary, emotional time and all I can really say is you just get through it because you have to. He completed his treatment a year and a half ago and continues to go for follow up scans every 4 months. I continue to worry about it everyday. 
I don't know a whole lot about thyroid cancer but I do know a bit about how you are feeling and the cancer process. If I can help in anyway please get in touch. I also finished treatment for breast cancer last August. Was diagnosed 6 months after my son finished treatment, last January.
Sammi

Re: I'm a mom to a 22 year old daughter with diffuse sclerosing papillary thyroid cancer.

Posted by Danielle08 on Jan 19, 2019 12:41 am

I was diagnosed with papillary thyroid cancer just a few days after turning 21 and I am 23 now. Sometimes recovery seems very distant but without realizing it arrives and everything starts to return to "normal", I hope to find your dose of levothyroxine as soon as possible, that influences everything. Lots of love and hope heart

Re: I'm a mom to a 22 year old daughter with diffuse sclerosing papillary thyroid cancer.

Posted by Elsie13 on Jan 19, 2019 2:47 pm

Danielle08‍ , svenne‍ ,  Wecome. Glad to see you have found cancerconnection. 

JamieDad‍ ,  Did you want to update your story?  Also, Svenne is looking to connect with people who are parents to young adult cancer patients. 

Re: I'm a mom to a 22 year old daughter with diffuse sclerosing papillary thyroid cancer.

Posted by svenne on Jan 19, 2019 9:32 pm

Thank you all for responding, I came in wanting to ask many questions, but for now, I need to focus on staying level headed. I will be back once I get my thoughts make enough sense to write out.

Re: I'm a mom to a 22 year old daughter with diffuse sclerosing papillary thyroid cancer.

Posted by Danielle08 on Feb 15, 2019 2:10 am

I’m not sure how this web works but if you had any questions that I can help with, will be a pleasure helping you.! 

And I will try to update my experience ASAP. 
 

Re: I'm a mom to a 22 year old daughter with diffuse sclerosing papillary thyroid cancer.

Posted by Cynthia Mac on Feb 16, 2019 7:23 am

svenne‍ We’ll be here when you’re ready.

Danielle08‍ , this site works great. You can search for anything using the search box in the top right of each screen. You can search for members by using the Members tab, and you can tag the by typing @ then the start of their name (with no space). When you do this a list of suggestions will come up, and you can choose the one you need. Dashboard is pretty much for your own information (my account, my messages, etc.) and Forums is where you’ll find the most recent discussions and be able to drill down into older information. Groups is where you can go to join a group - for example, there’s the Man Cave and also Ladies’ Retreat - these are places where you can go and talk about more recreational or even more sensitive topics. Finally there’s a place where you can set up your own on-line journal about your cancer experience. You can make it public or private, and there’s quite a list of them!