Talking Frankly about Living with Advanced Cancer

Are you living with advanced cancer (sometimes referred to as stage 4 or metastatic cancer)? This discussion is a safe space where you can connect with others to talk about the realities of living with limited time. It’s not easy to find people who understand what it is like. For many reasons, you may not feel comfortable talking about your thoughts and emotions with friends or family. Perhaps you are alone. Even if you are surrounded by people who support you, you may experience intense loneliness.

Connect is a place where honest conversation can safely take place. You can speak frankly and be heard without judgement. I invite you to share your reality facing death and living now.

Hi @bdpp,

I’m so happy to see that you’ve joined Connect! You’ve come to the right place to talk with members who have similar health experiences – more importantly, to get support from people who understand what you are going through.

I encourage you to go through the discussions listed below, where you’ll meet @jenmae @meg4434 @lynnkay1956 @0716 @texas7777 @twinskl, who’ve shared their experiences as well.
– Stage 4 Malignant Melanoma internal https://connect.mayoclinic.org/discussion/stage-4-malignant-melanoma-internal/
– Melanoma: genetics and recurrence https://connect.mayoclinic.org/discussion/melanoma-1/

@bdpp, it’s great to hear about your 1st clear PET scan – looking forward to getting to know more about you.

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@bdpp

Hi. My 1 year cancerversary is this weekend. Started at Stage 3, moved to Stage 4 in December. Metastatic Melanoma, unknown primary, Wild-type (negative on mutations). Received my 1st clear PET scan this past June (Yeah!) after every 3 weeks of immunotherapy, chemo added in for 4 of those treatments, 3 surgeries and too many not clear scans. Live in Rochester, MN and have a great oncology team at Mayo. I have been looking for a support group that involves people living with advanced cancer. Maybe I have found it? Have not read through all the posts here, but I will. Wanted to say hi and happy to have found you all.

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Hello @bdpp

I would like to add my "welcome" as well. Mayo Connect is a supportive, caring community and I think you will enjoy the posts and interactions. It is wonderful that you live close to Mayo and are able to get your treatment there. Congratulations on your clear PET scan in June. I'm wishing you many more!

I have had three surgeries for neuroendocrine tumors (carcinoid type) which is a rare form of malignancy. When I found Mayo Connect in 2016 I was facing my third surgery and found others who could share with me so that I did not feel so alone. I hope you find the same source of encouragement that I did.

I look forward to getting to know you better.

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@IndianaScott

Hello @bdpp Welcome to Connect! It is great to have you here — and I hope you find Connect as a great a community as so many of us have! For me it really helped break the isolation of caregiving for my wife, who fought brain cancer for 14+ years!

While not a nice situation for you, very nice that you are right in Rochester! We made our treks from NW Indiana, but like you found a truly fabulous oncology team! My wife's neuro-oncologist was a tremendous gift for her and our entrie family.

Wishing you continued strength, courage, and peace!

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Thanks Scott. Yes, I think I may have found a healthier place to socialize and voice frustrations… and help others.

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@hopeful33250

Hello @bdpp

I would like to add my "welcome" as well. Mayo Connect is a supportive, caring community and I think you will enjoy the posts and interactions. It is wonderful that you live close to Mayo and are able to get your treatment there. Congratulations on your clear PET scan in June. I'm wishing you many more!

I have had three surgeries for neuroendocrine tumors (carcinoid type) which is a rare form of malignancy. When I found Mayo Connect in 2016 I was facing my third surgery and found others who could share with me so that I did not feel so alone. I hope you find the same source of encouragement that I did.

I look forward to getting to know you better.

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Thank you for your words of encouragement. Being close to Mayo is helpful for sure, but stay tuned for the conversations around shoveling snow to get to those early morning appointments. 😉

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@bdpp

Hi. My 1 year cancerversary is this weekend. Started at Stage 3, moved to Stage 4 in December. Metastatic Melanoma, unknown primary, Wild-type (negative on mutations). Received my 1st clear PET scan this past June (Yeah!) after every 3 weeks of immunotherapy, chemo added in for 4 of those treatments, 3 surgeries and too many not clear scans. Live in Rochester, MN and have a great oncology team at Mayo. I have been looking for a support group that involves people living with advanced cancer. Maybe I have found it? Have not read through all the posts here, but I will. Wanted to say hi and happy to have found you all.

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@bdpp, I'd like to add my welcome. We talk about everything and anything in this group. Mostly we talk about living and we're not afraid to face the tough stuff head on. I look forward to getting to know more about you beyond cancer. What brings you joy?

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@jenjazz I was diagnosed in december with stage 4 rare clear cell ovarian cancer that had metastised throughout abdomin, surgery, 12 chemo treatments later. Now on oxygen 24/7. good news? they say cancer is gone!!!! So why do I feel like it is not gone? I feel like it is still there waiting to take me down.

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Good morning @jazzjen. Welcome to Connect. Great folks are here who will understand your “What’s next?” conundrum.

I don’t know how old you are and yet I see that aging takes it toll because we start being aware of conditions and diseases that impact our families and friends?

I tend to get out over my skis…..as my partner says. That is why mindful meditation can help you stay present in the now. We all can do whatever it takes to have a healthy lifestyle.

What recommendations have you had from your medical providers? Are you using any medications at this time?

You have come through a tough time. And so has your body. Be good to yourself now. And may you be healthy and whole. Chris

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@jazzjen

@jenjazz I was diagnosed in december with stage 4 rare clear cell ovarian cancer that had metastised throughout abdomin, surgery, 12 chemo treatments later. Now on oxygen 24/7. good news? they say cancer is gone!!!! So why do I feel like it is not gone? I feel like it is still there waiting to take me down.

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@jazzjen Welcome to MayoClinicConnect. These past few months must have been so difficult for you. Do you have family? How has all this affected them? Why do you feel that the cancer is not gone? Is there too much “down in the dumps feeling” around the house? I don’t have cancer (I have an autoimmune disease), but as a nurse, I specialized in care of cancer patients. As nurses, we became so tuned into our patients and their moods. Some were such an inspiration for all of us! Even if they did or didn’t know what their outcome would be, they looked forward and lived each day at a time. Many of them I still remember.
Have you thought about talking with a therapist? Someone who would just listen? Feeling anxious about the future is not wrong, it just is. We’re here to listen. Will you keep in touch with us? We care

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@artscaping

Good morning @jazzjen. Welcome to Connect. Great folks are here who will understand your “What’s next?” conundrum.

I don’t know how old you are and yet I see that aging takes it toll because we start being aware of conditions and diseases that impact our families and friends?

I tend to get out over my skis…..as my partner says. That is why mindful meditation can help you stay present in the now. We all can do whatever it takes to have a healthy lifestyle.

What recommendations have you had from your medical providers? Are you using any medications at this time?

You have come through a tough time. And so has your body. Be good to yourself now. And may you be healthy and whole. Chris

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Thanks for the welcome!! I just turned 60. I was very active before my cancer diagnosis and auto immune diseases diagnosis. I have a farm and horses, cleaned houses, worked out at gym, hiked,kayaked etc etc before getting sick. now i cannot work or do much at the farm. I have an amazing support group of friends and family for which i am very grateful. But I do not want to worry them with anything else. I am on anti depressants and going to pulmonary PT. The smallest of tasks like shower, cooking,laundry exhausts me. so I sleep a lot.

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@becsbuddy

@jazzjen Welcome to MayoClinicConnect. These past few months must have been so difficult for you. Do you have family? How has all this affected them? Why do you feel that the cancer is not gone? Is there too much “down in the dumps feeling” around the house? I don’t have cancer (I have an autoimmune disease), but as a nurse, I specialized in care of cancer patients. As nurses, we became so tuned into our patients and their moods. Some were such an inspiration for all of us! Even if they did or didn’t know what their outcome would be, they looked forward and lived each day at a time. Many of them I still remember.
Have you thought about talking with a therapist? Someone who would just listen? Feeling anxious about the future is not wrong, it just is. We’re here to listen. Will you keep in touch with us? We care

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Thank you for the reply. I think that just talking with people on this connect will help. Are there others with this rare clear cell ovarian cancer and auto immune diseases as well? I have been soooo positive through this treatment. But I think I expected to feel good now that cancer is in remission and I don't. The lung problem keeps me down.

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@jazzjen

Thank you for the reply. I think that just talking with people on this connect will help. Are there others with this rare clear cell ovarian cancer and auto immune diseases as well? I have been soooo positive through this treatment. But I think I expected to feel good now that cancer is in remission and I don't. The lung problem keeps me down.

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Hello @jazzjen,
I also have a rare form of cancer, neuroendocrine tumors (NETs) mine is of the carcinoid variety. I have had three surgeries, 2003, 2005 and 2016. I understand what you mean when you say, "they say cancer is gone!!!! So why do I feel like it is not gone? I feel like it is still there waiting to take me down." I think of it as the "cancer cloud" and it can follow you around like a cloud if you allow it.

I take it that your lung problems are related to cancer or to the cancer treatment? Is that so? If so, it is very understandable that you would be very fatigued when you engage in regular activities of daily living, like taking a shower, cooking, etc. Without strong lung funtion, you can feel very tired, very quickly and this is normal.

My cancer and surgeries were in the upper digestive tract and so my post-surgery problems have more to do with food, digestion, concerns about absorption, etc. I am very fatigued as well.

The great thing about Connect is being able to connect with others without leaving your house and being able to sit while you do it! This is especially good when you have a low energy level.

Keep posting here on Connect. I look forward to getting to know you better.

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@jazzjen

Thank you for the reply. I think that just talking with people on this connect will help. Are there others with this rare clear cell ovarian cancer and auto immune diseases as well? I have been soooo positive through this treatment. But I think I expected to feel good now that cancer is in remission and I don't. The lung problem keeps me down.

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Hi @jazzjen, I add my welcome, too. You asked if there are others with clear cell ovarian cancer on Connect. Yes, there are. Check out this discussion in the Gynecologic Cancer group (https://connect.mayoclinic.org/group/gynecologic-cancer/)
– Rare cancer: ovarian clear cell carcinoma https://connect.mayoclinic.org/discussion/rare-cancer/

You'll find discussions about Autoimmune Diseases here: https://connect.mayoclinic.org/group/autoimmune-diseases/

You also mentioned pulmonary rehab. I've seen members of the Lung Health talking about their success with pulmonary rehab and even special choir and harmonica groups for people with limited lung capacity. See these discussions:
– Pulmonary Rehabilitation https://connect.mayoclinic.org/discussion/pulmonary-rehabitlitaion/
– “Harmonica therapy” for chronic obstructive pulmonary disease https://connect.mayoclinic.org/discussion/harmonica-therapy-for-chronic-obstructive-pulmonary-disease/

Jen, has the pulmonary PT started to help improve your lung function?

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Hello JazzJen………my oral cancer is in remission. I have respritory issues and am on oxygen 24/7. I found it took several months to adapt to the oxygen therapy. I do feel I need more sleep or should I say naps. My sleeping pattern has definitely changed. Give yourself some time to get used to the oxygen.

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@hopeful33250

I’m glad that you posted this discussion, Colleen. As I’ve had three surgeries for neuroendocrine tumors, a rare form of cancer, I’ve found myself wanting to look positively at the future, but with a cautious-eye on the reality of three occurrences. While I keep active, and I volunteer, work and maintain friendships, the reality of cancer is always there. I find myself still searching for answers and still trying to live a normal life. It really is a different reality from my life prior to cancer.

I would love to hear from others who are living with this dilemma. How are you balancing the different feelings of optimism and the reality of a cancer diagnosis?

Teresa

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I’m heading to Mayo today in Arizona. My doctors there are wonderful.
I am having my first recurrence of Ovarian Cancer and pretty scared.
I will be getting surgery and chemo. This time I think it will be Carboplatin and Doxil .
Has anyone had that and what side effects did you have?

D96AF184-19CE-43D7-89E8-90E61E8B5AF2

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Good luck. Sending positive energy. You got this!!

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