Facing Cancer Recurrence, PTSD & Acknowledging Mental Health

Posted by Merry, Volunteer Mentor @merpreb, Dec 6, 2018

It’s extremely difficult to face the fact of recurring cancers. After treatments we try and get away from it all and live our life. Then along comes another CT scan or PET scan and POW, you have to face another cancer. My reaction was developing PTSD.

You can read what I wrote in my blog: https://my20yearscancer.com/blog/

How do we cope? How do we react? What do we do?
How have you all reacted to another cancer? Or the possibility of another one? Has your “already compromised” mental health been able to deal with it? How? Or not?

Good morning.
My breast cancer came back 4 months after completing my first chemo. I felt hurt like I was punched in the gut! My recurrent breast cancer was in the sentinal lymph node site. I had surgery to remove the lymph nodes on my left arm. I am back on chemo with 5 months of chemo followed by radiation.
My doctor says it is stage 3. It is crazy how I cling to that! Back to work full time and have had a really hard time. I feel sick all the time. I am 65 and thought I was healthy 14 months ago.
I don't have family close by and most of the people I thought were friends don't call. I thank God for the couple who do call.

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Hi Margaret, am so sorry to learn of your recurrence. I too had a breast cancer to return as a chest wall recurrence within a year after a total mastectomy. Then had a small surgery followed by 50 sessions of twice a day radiation. That was 8 years ago when I was 71. What you are going through is scary, but doable. Try to focus on one day at a time & be glad that modern medicine can help you to survive & lead a productive life.

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@margaret2

Good morning.
My breast cancer came back 4 months after completing my first chemo. I felt hurt like I was punched in the gut! My recurrent breast cancer was in the sentinal lymph node site. I had surgery to remove the lymph nodes on my left arm. I am back on chemo with 5 months of chemo followed by radiation.
My doctor says it is stage 3. It is crazy how I cling to that! Back to work full time and have had a really hard time. I feel sick all the time. I am 65 and thought I was healthy 14 months ago.
I don't have family close by and most of the people I thought were friends don't call. I thank God for the couple who do call.

Jump to this post

Margaret, I am so sorry you are going through this. If there are some groups where you are that you can reach out to, can you try that. Where I live, there are several support groups. If that is possible, you will meet many people with similar situations and can share your thoughts and concerns. I've found that as long as I focus in one day at a time that that helps. All the best to you.

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Oh the reply I have. In 1988 I was 12 years old and diagnosed with Hodgekins Lymphoma. The best of the worst they said. I had mantle radiation. I guess things were so different then because that mantle radiation not only brought on cancer. Twice. Even more. First I had cardio myopathy, congestive heart failure. Pancreatitis . Then Breast cancer. I had a double mastectomy. We caught it in it's earliest stage but it was only going to become a problem (went through a long re construction that failed) Last year I asked my dr for a CT because of some symptoms I was having. It didn't happen . I asked my oncologist. They found a very large tumor(Meningioma) In January I had it removed. I'm 42. Pretty sure more is coming. The odds just say there is. So yeah there is some PTSD…some impending doom. I'm a positive person. All the medical issues were the best of the worst and caught early. I am just so thankful and grateful the tumor is out of my head! There will be side effects from brain surgery. Bring it. Seeing the picture they showed me of it…knowing it was there…waiting for surgery. The relief knowing it's gone. For me,catching it early. I'll be putting my foot down with my dr. Full body scan. Often. lol
I started painting a few years ago. Following tutorials on line for free.I'm good at it and I love it. I have done a few originals but I love learning and challenging myself and escaping thinking about what's next. I have a 23 year old son I raised on my own and I am so thankful for all the blessings and early detection.
I would love to find a way to find people who also had mantle radiation in 1988 or around that time….what should I also be checking and keeping an eye on. I don't want to obsess but to be wise. @merperb

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@julie1976

Oh the reply I have. In 1988 I was 12 years old and diagnosed with Hodgekins Lymphoma. The best of the worst they said. I had mantle radiation. I guess things were so different then because that mantle radiation not only brought on cancer. Twice. Even more. First I had cardio myopathy, congestive heart failure. Pancreatitis . Then Breast cancer. I had a double mastectomy. We caught it in it's earliest stage but it was only going to become a problem (went through a long re construction that failed) Last year I asked my dr for a CT because of some symptoms I was having. It didn't happen . I asked my oncologist. They found a very large tumor(Meningioma) In January I had it removed. I'm 42. Pretty sure more is coming. The odds just say there is. So yeah there is some PTSD…some impending doom. I'm a positive person. All the medical issues were the best of the worst and caught early. I am just so thankful and grateful the tumor is out of my head! There will be side effects from brain surgery. Bring it. Seeing the picture they showed me of it…knowing it was there…waiting for surgery. The relief knowing it's gone. For me,catching it early. I'll be putting my foot down with my dr. Full body scan. Often. lol
I started painting a few years ago. Following tutorials on line for free.I'm good at it and I love it. I have done a few originals but I love learning and challenging myself and escaping thinking about what's next. I have a 23 year old son I raised on my own and I am so thankful for all the blessings and early detection.
I would love to find a way to find people who also had mantle radiation in 1988 or around that time….what should I also be checking and keeping an eye on. I don't want to obsess but to be wise. @merperb

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@merpreb

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@lady1lake

Hi Margaret, am so sorry to learn of your recurrence. I too had a breast cancer to return as a chest wall recurrence within a year after a total mastectomy. Then had a small surgery followed by 50 sessions of twice a day radiation. That was 8 years ago when I was 71. What you are going through is scary, but doable. Try to focus on one day at a time & be glad that modern medicine can help you to survive & lead a productive life.

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Thank you so much. Your story gives me hope.

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@trixie1313

Margaret, I am so sorry you are going through this. If there are some groups where you are that you can reach out to, can you try that. Where I live, there are several support groups. If that is possible, you will meet many people with similar situations and can share your thoughts and concerns. I've found that as long as I focus in one day at a time that that helps. All the best to you.

Jump to this post

I am sure there are groups around but I don't know how to find them.
I will need to be more proactive. Thank you for responding.

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@margaret2

I am sure there are groups around but I don't know how to find them.
I will need to be more proactive. Thank you for responding.

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Hello @margaret2

Welcome to Mayo Connect. While I have not had breast cancer, I have had 3 surgeries for a rare form of cancer and I can understand just a little as to what you are feeling. It can be devastating to get the news that there is yet another cancer to deal with. I certainly admire your ability to go back to work as I'm sure you are not feeling all that great right now.

I see that you have received a lot of support from other Members already. If you are looking for a personal support group, I would like to suggest that you contact the local American Cancer Society in your area. They will undoubtedly have a list of groups nearby.

Will you keep in touch?

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@margaret2

Good morning.
My breast cancer came back 4 months after completing my first chemo. I felt hurt like I was punched in the gut! My recurrent breast cancer was in the sentinal lymph node site. I had surgery to remove the lymph nodes on my left arm. I am back on chemo with 5 months of chemo followed by radiation.
My doctor says it is stage 3. It is crazy how I cling to that! Back to work full time and have had a really hard time. I feel sick all the time. I am 65 and thought I was healthy 14 months ago.
I don't have family close by and most of the people I thought were friends don't call. I thank God for the couple who do call.

Jump to this post

I'd like to add my welcome to Connect @margaret2. I'm sorry that your cancer has recurred. Yesterday I was at my hospital, MGH for a follow up CT scan for NSCLC, lung cancer. My cancer journey started in 1997 and since then I have had 4 lung cancers with a total 6 cancerous nodules. The CT scan yesterday appears stable, so for the next 6 months my mind will be at peace. It's been 22 years since my first lung cancer. And each one was like you said, a punch in the gut. I've had chemo and 2 types of radiation.
Being at piece by no means mean that I wont worry or be scared, or think about cancer or dying, it just means that I've learned to put it on my back plate for just a little while.
I know that you have too, it's even scarier because you need to repeat everything. It's a fight that keeps on happening-it's cancer and it sucks.

REPLY
@julie1976

Oh the reply I have. In 1988 I was 12 years old and diagnosed with Hodgekins Lymphoma. The best of the worst they said. I had mantle radiation. I guess things were so different then because that mantle radiation not only brought on cancer. Twice. Even more. First I had cardio myopathy, congestive heart failure. Pancreatitis . Then Breast cancer. I had a double mastectomy. We caught it in it's earliest stage but it was only going to become a problem (went through a long re construction that failed) Last year I asked my dr for a CT because of some symptoms I was having. It didn't happen . I asked my oncologist. They found a very large tumor(Meningioma) In January I had it removed. I'm 42. Pretty sure more is coming. The odds just say there is. So yeah there is some PTSD…some impending doom. I'm a positive person. All the medical issues were the best of the worst and caught early. I am just so thankful and grateful the tumor is out of my head! There will be side effects from brain surgery. Bring it. Seeing the picture they showed me of it…knowing it was there…waiting for surgery. The relief knowing it's gone. For me,catching it early. I'll be putting my foot down with my dr. Full body scan. Often. lol
I started painting a few years ago. Following tutorials on line for free.I'm good at it and I love it. I have done a few originals but I love learning and challenging myself and escaping thinking about what's next. I have a 23 year old son I raised on my own and I am so thankful for all the blessings and early detection.
I would love to find a way to find people who also had mantle radiation in 1988 or around that time….what should I also be checking and keeping an eye on. I don't want to obsess but to be wise. @merperb

Jump to this post

@julie1976, wow. Not sure how else to respond. I simply cannot imagine dealing with what you are managing so incredibly well. To think that radiation to treat childhood NHL can cause so many very serious multiple cancers and other conditions. But yours is not an isolated case. I will look for others who had mantle field radiation for non-Hodgkins lymphoma. Luckily this type of radiation treatment is rarely, if ever, used today.

I applaud your ability to remain a positive person and to be such a strong self-advocate. You know your body. We have a group of artists here on Connect who share about art and healing. I think you might like to also join this discussion:
> Just Want to Talk group > Art for Healing > https://connect.mayoclinic.org/discussion/art-for-healing/

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@margaret2

I am sure there are groups around but I don't know how to find them.
I will need to be more proactive. Thank you for responding.

Jump to this post

Margaret, can you ask your oncologist if they have a cancer coordinator and if not if they know of any support groups? Ours had information for our hospital group, but also provided information from other medical centers that had support groups and classes. Also, when I went for radiation that office also had information for support groups, yoga, etc.

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@colleenyoung

@julie1976, wow. Not sure how else to respond. I simply cannot imagine dealing with what you are managing so incredibly well. To think that radiation to treat childhood NHL can cause so many very serious multiple cancers and other conditions. But yours is not an isolated case. I will look for others who had mantle field radiation for non-Hodgkins lymphoma. Luckily this type of radiation treatment is rarely, if ever, used today.

I applaud your ability to remain a positive person and to be such a strong self-advocate. You know your body. We have a group of artists here on Connect who share about art and healing. I think you might like to also join this discussion:
> Just Want to Talk group > Art for Healing > https://connect.mayoclinic.org/discussion/art-for-healing/

Jump to this post

@colleenyoung thank you so much! I doubt it matters but mine was hodgkins not non-hodgkins. I think mantle radiation in that time frame had the same affect on everyone. When I read this "How do we cope? How do we react? What do we do?
How have you all reacted to another cancer? Or the possibility of another one? Has your “already compromised” mental health been able to deal with it? How? Or not?" I just had to respond. It is scary…holding your breath at every test result…letting your mind wander into the "what if" area. Quite honestly I know that it will happen. If this much has happened already I don't see how it will be over for the rest of my life. Remember the show Doctor? I am that patient! lol But I am happy 🙂 Happy I'm here. Any one of those things could have killed me.
Now I am in recovery and my art has helped me. I'll check that out .Thank you for the link

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Hi all,
Today's member spotlight features @merpreb who most of you have met in this discussion group. Read Merry's interview with fellow member John Bishop to find out what surprised her about Connect and how she finds balance in life. Puppies or kittens?

– A Survivor: Meet @merpreb https://connect.mayoclinic.org/page/about-connect/newsfeed/a-survivor-meet-merpreb/

Check out all the Member Spotlights here https://connect.mayoclinic.org/page/about-connect/tab/newsfeed/

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@cherlea

I was diagnosed 21 years ago at age 41 with DCIS non-invasive had a lumpectomy and radiation of my right breast last month I started experiencing breast discharge and a biopsy was done of my left breast duct and it was positive for DCIS non-invasive. I've made the decision to have a double mastectomy. I'm feeling very depressed about the fact that my cancer came back, I'm grateful that I had 21 years before reoccurrence, and its a early cancer, but it's still hard to cope with. I was tested for the 25 genetic mutations back in 2014 and didn't test positive for any I heard there's 47 now out there and I'm going to be retested.

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@cherlea Hi 🙂 Am I understanding this correctly…..you had a double mastectomy and have had cancer come back?

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@margaret2

I am sure there are groups around but I don't know how to find them.
I will need to be more proactive. Thank you for responding.

Jump to this post

To find groups on Connect, go the Groups Directory https://connect.mayoclinic.org/groups/
I've uploaded 2 images to show how to find the Groups Directory in the menu on a computer or mobile device. You can search for groups using the search or sort them alphabetically etc.

Learn more about how to follow and unfollow groups and more in the Get Started on Connect guide: https://connect.mayoclinic.org/get-started-on-connect/

Group Directory

Groups mobile

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