Living with AYA cancer: Introduce yourself and meet others

Welcome to the AYA Cancer group – a place to just talk about anything and everything.

Pull up a chair and introduce yourself. What is your cancer story? What's on your mind?

Interested in more discussions like this? Go to the Adolescent & Young Adult (AYA) Cancer group.

@colleenyoung

@jessica0, I'm sure you and @haileyc and @stephtubman have immunotherapies experiences to share.
I bet your son and daughter are your inspiration and distraction from cancer. But I can also imagine that discovering cancer while pregnant compounds all the worries of both cancer and parenthood. Where did you find your emotional and mental support?

Hey @taybro4, congrats on finishing school and your activism. I hope you'll let other AYAs at BTM know about the Mayo support group here and the Zoom meetings. COVID has interrupted life for everyone around the globe, but for the pandemic to hit just as you were figuring out post-treatment life is also a double blow. Has the fact that the world kinda stopped or slowed down, too, been helpful and given you more time to reflect and make a plan? Or has it been like holding back a bull ready to get out of the pen? What did you study as ASU?

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Thank you! I have found a few friends with chronic blood disorders within my BTM connections, but none that are on track for transplant or have a cancer diagnosis at this point. I am always happy to share about this group with those who would benefit.
I think that COVID has definitely slowed down my progress and your analogy is on point! I had to stop shadowing a doctor and some of the activism I was doing was also paused. It made me pivot in my plans. Instead of applying for medical school right away, I decided I would try the workforce first and in a couple of years I would decide if it was still something I want to do. I just actually accepted a job at the NMDP/BTM so I am so excited I get to continue this work and have found something amazing to be apart of even when the world is paused. I will get to contact, educate, and help our donors that are identified as matches. And if I ever do decide to apply for medical school, I believe I will be more ready, mature, confident, and prepared.
I studied biomedical engineering at ASU, so by the time I got sick I already knew a fair bit of biology and tried to look at my illness as a case study at times. I have learned so much about hematology and the whole experience has really shaped my goals for my future and my career.
Even though covid slowed everything down and brought a lot of the same anxieties about not working towards my goals that I had when I first got sick, I feel I am in a good place now and have made the best of my situation.

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@taybro4

Hi everyone! My story is that I got sick in my junior year at ASU and was diagnosed with myelodysplastic syndrome in 2017. I had a stem cell transplant from a donor in Poland in January of 2018 and was able to go back to school later that year, and finish my degree in 2019. Activism has been a huge part of my healing process and I have been volunteering and involved with an organization called Be The Match since diagnosed. BTM is the organization that registers bone marrow donors for these transplants and it is so amazing to be able to give back this way and honor my donor. The hardest part of this whole process for me was stopping my education for treatment and then reintegrating into society and figuring out what I was/am supposed to do with my life post-treatment (especially since part of that healing has occurred during covid). The friends I have made in the Mayo support group have been invaluable before, during, and after treatment. I never felt alone with them, and I hope that anyone who joins us here or in our virtual meetings can find the same solidarity and kinship that I have. If you relate to anything I have said or want to know more, please feel free to reach out!

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Hey! I also got diagnosed during undergrad. It was a crazy time but I was lucky and had a ton of support from my Hall Director and the professors I had at the time. How was the support for you? I hope it was good.

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Hey @annalise and welcome! How many years ago was your diagnosis and how are you doing now?

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@amandajro

Hey @annalise and welcome! How many years ago was your diagnosis and how are you doing now?

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Ah I see my introduction note didn't upload! I was 1st diagnosed with hodgkin's lymphoma in 2016 when I was in my 2nd year of undergrad and I did ABVD chemo and 15 days of proton radiation. I went into remission for 3 years then I had a relapse in symptoms and did ICE chemo and an auto stem cell transplant and another 15 days of radiation. Now I'm back in remission and doing a bit of maintenance bleomicin chemo!

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@annalise

Ah I see my introduction note didn't upload! I was 1st diagnosed with hodgkin's lymphoma in 2016 when I was in my 2nd year of undergrad and I did ABVD chemo and 15 days of proton radiation. I went into remission for 3 years then I had a relapse in symptoms and did ICE chemo and an auto stem cell transplant and another 15 days of radiation. Now I'm back in remission and doing a bit of maintenance bleomicin chemo!

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Hi @annalise, I am so glad you are in remission. What a good feeling. Can you tell me a little about your maintenance chemo? How does that work?

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@amandaa

Hi @annalise, I am so glad you are in remission. What a good feeling. Can you tell me a little about your maintenance chemo? How does that work?

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I'm glad too! So the way I understand the maintenance chemo is that my scans are all coming back clear but because I had a reoccurrence of the cancer, we are doing a year or so of very low dose of chemo to ensure that any cells that might be cancerous but not show up on a scan are taken care of. I am able to work full time and do classes as well so it doesn't interrupt my life too much which is great.

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@colleenyoung

@jessica0, I'm sure you and @haileyc and @stephtubman have immunotherapies experiences to share.
I bet your son and daughter are your inspiration and distraction from cancer. But I can also imagine that discovering cancer while pregnant compounds all the worries of both cancer and parenthood. Where did you find your emotional and mental support?

Hey @taybro4, congrats on finishing school and your activism. I hope you'll let other AYAs at BTM know about the Mayo support group here and the Zoom meetings. COVID has interrupted life for everyone around the globe, but for the pandemic to hit just as you were figuring out post-treatment life is also a double blow. Has the fact that the world kinda stopped or slowed down, too, been helpful and given you more time to reflect and make a plan? Or has it been like holding back a bull ready to get out of the pen? What did you study as ASU?

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I didn’t know I had cancer till after I delivered my daughter which looking back was a blessing because I don’t think I would have wanted to know while pregnant. I had to really lean on my husband, mother in-law, and father in-law to take care of my kids and I got to just come along for the ride.
I didn’t really have a particular mental or emotional support resource, but I would share whatever I was going through with my closest family. My husband is definitely the one who took on my most honest moments. Also just playing or holding my kids was a huge stress relief for me too. My goal was to be here for their next birthdays and to do normal things that mom’s do independently.

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@ana15vankoeverden

Hello!
I was diagnosed with a Pilocytic astrocytoma in the brainstem at 3 years old in 2008. I have been battling cancer for 12 years!! I have had lots of chemotherapy, radiation, lots of pill taking, and surgeries. I just had neurosurgery in May 2020. I have been on chemo for the last 3 years, and just had shrinkage from my latest MRI scan. If you have any questions or would like to get to know me more, feel free to reach out! I am always looking for survivors or warriors to connect with!

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Hello Ana! My name is Molly ( quirkygirl35) and I also had a brain tumor at a young age, I was 10 at the time though.
So did'nt they need to give you any radiation? Mine was also on my brain stem and I had radiation. This was all back in 1992 though so I don't know how much medical technology has advanced…

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@colleenyoung

Hi @haileyc @jessica0 @leukskywalker @stephtubman @gulstada, let's get this conversation started. What's your cancer story?

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I am 25 years old, I was diagnosed with Melanoma at 21 and have been battling ever since. I am currently doing radiation and a combination of chemo and immunotherapy. I love connecting and talking with people and really hope to see a in-person support group started so if anyone on here knows of one I'd love to join (I know its hard right now to connect due to the state of the world at this time, restrictions are lifting so I still have hope.

Peace be with you,
Krista

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Hi, everyone! I am new to the group. I was diagnosed with breast cancer at age 32 when I was 37 weeks pregnant. This was at the very end of December 2019, and last year I went through chemotherapy, surgery, and radiation. Now, I've been in remission for about a year. I just found out about this resource from my team, and I thought it would be helpful to connect with people who have been through a similar experience. I hope you're all doing well.

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@coffeesd

Hi, everyone! I am new to the group. I was diagnosed with breast cancer at age 32 when I was 37 weeks pregnant. This was at the very end of December 2019, and last year I went through chemotherapy, surgery, and radiation. Now, I've been in remission for about a year. I just found out about this resource from my team, and I thought it would be helpful to connect with people who have been through a similar experience. I hope you're all doing well.

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Hi Sarah, welcome!
Kudos to your team for telling you about Mayo Clinic Connect. Allow me to introduce you to @jessica0. She, too, discovered she had cancer while pregnant. @stephtubman was about the same age as you when she was diagnosed.

Going through cancer treatments from pre-COVID and then transitioning to all the new pandemic protocols in 2020 sure added an extra level of complexity and anxiety. How are you doing now? What do you find most challenging now that active treatment is finished?

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@colleenyoung

Hi Sarah, welcome!
Kudos to your team for telling you about Mayo Clinic Connect. Allow me to introduce you to @jessica0. She, too, discovered she had cancer while pregnant. @stephtubman was about the same age as you when she was diagnosed.

Going through cancer treatments from pre-COVID and then transitioning to all the new pandemic protocols in 2020 sure added an extra level of complexity and anxiety. How are you doing now? What do you find most challenging now that active treatment is finished?

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Thank you for the welcome! I'm doing well now and trying to adjust back to normal life after active treatment with work and family. I think what I find most challenging is that there is a new part of my identity, as a cancer patient or survivor, that I never expected to have attached to myself, at least not at this age. I have always loved writing, so I have been writing a lot to cope with everything that goes along with cancer during a pandemic and the recovery process. I had a few friends early on tell me to focus on something that I'm passionate about during treatment, and that advice has proved very helpful.

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