1. < Cancer: Managing Symptoms
Mentor

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?

Interested in more discussions like this? Go to the Cancer: Managing Symptoms Support Group.

musicflowers4u | @musicflowers4u | Jul 8, 2019
In reply to @cwm1 "I had somehow never seen this post until yesterday. I was diagnosed with stage 2A triple..." + (show)
@cwm1

I had somehow never seen this post until yesterday. I was diagnosed with stage 2A triple negative breast cancer (the most aggressive kind) almost exactly 3 years ago. After a lumpectomy, chemo and radiation, I finally finished treatment in June....11 months later. I had several chemos postponed to to blood counts. In March 2018, they found a malignant nodule in my lung. Initially it was assumed to be metastatic breast cancer but, lucky me, it was lung cancer. I had a wedge resection and went on my merry way with no chemo or radiation. It was stage 1A. In Nov. 2018, they found another nodule. It was too small to biopsy. We waited 3 mos., had another scan and now there were 2, possibly 3 nodules, which were all too small to biopsy. That 3rd possible nodule, radiology didn’t see but the surgeon thought he did. That one was in the same lung. Tho other two are in the opposite lung. I’ll be rescanned July 25. They need to know if this is lung cancer or breast cancer before proceeding. I'm hoping they’re large enough to biopsy now.

When I say I’m hoping they’re large enough to biopsy, that's only half true. A part of me hopes they’re still too small but mentally, I’m not sure how I’ll make it another few months without totally flipping out. There are some other family issues that are stressing me out and the combination of all of them sometimes seems just too much to handle. My parents are thankfully still living and in reasonably good health considering they are 88 and 89 years young. They live 3 blocks from me but my nearest sibling is over 1100 miles away so my husband and I are the ones who do whatever they need doing. We have a 49 yr old son with some disabilities and marital issues who recently moved in with us and after 25 years of not having anyone living with us full time, this has been stressful. Our other 2 sons both live over 1000 miles away and the one who moved in lived 800 miles away until he moved in with us.

My salvation is that we live near a beach and I go almost every day and walk and sit. I try to walk at least 3 miles a day and frequently walk around 6. I think it helps me keep my sanity. I tend to cry....when I’m happy, when I’m sad, and frankly for no discernible reason at all. My husband has been a rock throughout all of this. The fact that we drive 1 1/2 hrs each way to see drs. at Mayo Jax makes things a bit more difficult too. I am 69 yrs old.

Jump to this post

I too “had” elderly parents to attend to and it seemed I was alone in that until I finally reached out to my step-siblings to re-enter their dad’s life. Then there was just mom who was 90 when I was my sickest. My siblings all lived either on the west coast or in the mid-west and one lived in Asia. When asked to help they all were not able. One had passed the previous year with multiple metastatic cancers, another just diagnosed with bladder cancer (which is now metastatic), my significant other had just gone through colon surgery, and then I was diagnosed with Carcinoid Cancer and went through surgery. Luckily one son stepped-up to the plate to help with mom. Less than four months post-surgery, while still trying to arrange meetings with Alzheimer’s agency reps for her future institutional care, mom passed away. I, as her executrix, was the one to settle her estate which included out-of-State property. We get through “the stuff” in life even at the worst times. For me, my reliance was on my God and his son Jesus to guide me. Though others I thought could help but failed to do so, my help came from unexpected sources when I sought that power higher than myself.

REPLY
1 reply
musicflowers4u | @musicflowers4u | Jul 8, 2019
In reply to @cwm1 "Thanks. The reason that they aren’t removing them without a biopsy is that if they are..." + (show)
@cwm1

Thanks. The reason that they aren’t removing them without a biopsy is that if they are metastatic triple negative breast cancer, removing them isn’t the proper treatment. So they would be removing a portion of my lung for no good reason. If it turns out to be the TNBC, the oncologist and physicians asst. are wonderful and sympathetic. If it turns out to be lung cancer, that's a different story. While I think the oncologist and surgeon are excellent in most ways, I just don’t think the mental aspects of this are their strong suit. But I am going to Mayo Jax and I know the drs there are so far superior to anyone local that there is no question I want to continue with them. I initially started out locally with the breast cancer. They totally missed the lump when they tried to biopsy, did not call with results, and it was a comedy of errors from the getgo. I was so furious and disgruntled that I called Mayo the second I walked in the door after the surgeon appt and never looked back. I did go and see a local psychologist one time. Frankly, I thought he was an idiot. When I thought about it, I should have expected that considering who recommended him.

Jump to this post

It sounds like you have very competent doctors advising you. I have a friend facing the same situation and her doctors are proceeding carefully for similar reasons. I, too, have small lung nodules bring “watched”. After having one type of cancer, doctors, oncologists, radiologists, are very diligent in analyzing new or existing nodules. They are trained to be suspicious of any changes and nuances that they suspect need a biopsy and leave the benign to diligent watching.

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Mentor
Merry, Volunteer Mentor | @merpreb | Jul 8, 2019
In reply to @cwm1 "Thanks. The reason that they aren’t removing them without a biopsy is that if they are..." + (show)
@cwm1

Thanks. The reason that they aren’t removing them without a biopsy is that if they are metastatic triple negative breast cancer, removing them isn’t the proper treatment. So they would be removing a portion of my lung for no good reason. If it turns out to be the TNBC, the oncologist and physicians asst. are wonderful and sympathetic. If it turns out to be lung cancer, that's a different story. While I think the oncologist and surgeon are excellent in most ways, I just don’t think the mental aspects of this are their strong suit. But I am going to Mayo Jax and I know the drs there are so far superior to anyone local that there is no question I want to continue with them. I initially started out locally with the breast cancer. They totally missed the lump when they tried to biopsy, did not call with results, and it was a comedy of errors from the getgo. I was so furious and disgruntled that I called Mayo the second I walked in the door after the surgeon appt and never looked back. I did go and see a local psychologist one time. Frankly, I thought he was an idiot. When I thought about it, I should have expected that considering who recommended him.

Jump to this post

@cwm1- Certainly I've seen my share of idiots too! After my first appointment with my first and present surgeon I walked out telling my husband that I didn't like him. My husband said that that wasn't important, just his skills. I've now known him for close to 22 years and love him. He was never and idiot though, just standoffish.
I'm so glad that you found your "medical home." Mine is at MGH as we do not have a Mayo Clinic near us.
We're lucky to have found these excellent doctors. To keep searching for the right ones is certainly worth the search. Don't you agree?

REPLY
Mentor
Merry, Volunteer Mentor | @merpreb | Jul 8, 2019
In reply to @musicflowers4u "I too “had” elderly parents to attend to and it seemed I was alone in that..." + (show)
@musicflowers4u

I too “had” elderly parents to attend to and it seemed I was alone in that until I finally reached out to my step-siblings to re-enter their dad’s life. Then there was just mom who was 90 when I was my sickest. My siblings all lived either on the west coast or in the mid-west and one lived in Asia. When asked to help they all were not able. One had passed the previous year with multiple metastatic cancers, another just diagnosed with bladder cancer (which is now metastatic), my significant other had just gone through colon surgery, and then I was diagnosed with Carcinoid Cancer and went through surgery. Luckily one son stepped-up to the plate to help with mom. Less than four months post-surgery, while still trying to arrange meetings with Alzheimer’s agency reps for her future institutional care, mom passed away. I, as her executrix, was the one to settle her estate which included out-of-State property. We get through “the stuff” in life even at the worst times. For me, my reliance was on my God and his son Jesus to guide me. Though others I thought could help but failed to do so, my help came from unexpected sources when I sought that power higher than myself.

Jump to this post

@musicflowers4u- I'm very glad that you found strength through a personal experience with a higher power, and your son. There are several ways to learn to cope, if it comes down to that. However, like you, it's always good to have or ask for help if it's available first.
Having to cope with things other than us when we are ill is added stress that many people need to cope with. And we are stronger than we think that we are. But sometimes we do have to start with a hard line and go from there, setting limits, etc. I had to do that. Don't you think that's where we have to start?

REPLY
1 reply
alamogal635 | @alamogal635 | Jul 8, 2019
In reply to @merpreb "@alamogal635- Good morning. Oh boy do I know what you mean! lol. Although I feel great..." + (show)
@merpreb

@alamogal635- Good morning. Oh boy do I know what you mean! lol. Although I feel great I'm still dreading my CT scan this Tuesday. After hearing that I have cancer 4 times I'm still never ready to hear it again. All I can say is that you get use to it- the dread, the heart palpitations, the night mares, the cold sweats...And you have to accept that it might come back and that you might have to go "through it all again". That doesn't make it easier, just more familiar. I think that I finally accepted it with my last one, almost 2 years ago. I also know that there are options and always new treatments.
The cancer world isn't any easy one. It's riddled with uncertainty, fear and looking over your shoulder. It's like having a bad dream follow you around, but with a truth attached to it. You can either chose to give yourself options in dealing with it, like you have, or deny it, like I did for quite a while. Does this make sense?.

Jump to this post

@merpreb Am wishing you the best tomorrow. I will be thinking of you. Thank you for the above words of encouragement. They help. Yes, you make complete and great sense.

REPLY
musicflowers4u | @musicflowers4u | Jul 9, 2019
In reply to @merpreb "@musicflowers4u- I'm very glad that you found strength through a personal experience with a higher power,..." + (show)
@merpreb

@musicflowers4u- I'm very glad that you found strength through a personal experience with a higher power, and your son. There are several ways to learn to cope, if it comes down to that. However, like you, it's always good to have or ask for help if it's available first.
Having to cope with things other than us when we are ill is added stress that many people need to cope with. And we are stronger than we think that we are. But sometimes we do have to start with a hard line and go from there, setting limits, etc. I had to do that. Don't you think that's where we have to start?

Jump to this post

Yes, you are right.

REPLY
Jackie, Alumna Mentor | @travelgirl | Jul 23, 2019
In reply to @cwm1 "I had somehow never seen this post until yesterday. I was diagnosed with stage 2A triple..." + (show)
@cwm1

I had somehow never seen this post until yesterday. I was diagnosed with stage 2A triple negative breast cancer (the most aggressive kind) almost exactly 3 years ago. After a lumpectomy, chemo and radiation, I finally finished treatment in June....11 months later. I had several chemos postponed to to blood counts. In March 2018, they found a malignant nodule in my lung. Initially it was assumed to be metastatic breast cancer but, lucky me, it was lung cancer. I had a wedge resection and went on my merry way with no chemo or radiation. It was stage 1A. In Nov. 2018, they found another nodule. It was too small to biopsy. We waited 3 mos., had another scan and now there were 2, possibly 3 nodules, which were all too small to biopsy. That 3rd possible nodule, radiology didn’t see but the surgeon thought he did. That one was in the same lung. Tho other two are in the opposite lung. I’ll be rescanned July 25. They need to know if this is lung cancer or breast cancer before proceeding. I'm hoping they’re large enough to biopsy now.

When I say I’m hoping they’re large enough to biopsy, that's only half true. A part of me hopes they’re still too small but mentally, I’m not sure how I’ll make it another few months without totally flipping out. There are some other family issues that are stressing me out and the combination of all of them sometimes seems just too much to handle. My parents are thankfully still living and in reasonably good health considering they are 88 and 89 years young. They live 3 blocks from me but my nearest sibling is over 1100 miles away so my husband and I are the ones who do whatever they need doing. We have a 49 yr old son with some disabilities and marital issues who recently moved in with us and after 25 years of not having anyone living with us full time, this has been stressful. Our other 2 sons both live over 1000 miles away and the one who moved in lived 800 miles away until he moved in with us.

My salvation is that we live near a beach and I go almost every day and walk and sit. I try to walk at least 3 miles a day and frequently walk around 6. I think it helps me keep my sanity. I tend to cry....when I’m happy, when I’m sad, and frankly for no discernible reason at all. My husband has been a rock throughout all of this. The fact that we drive 1 1/2 hrs each way to see drs. at Mayo Jax makes things a bit more difficult too. I am 69 yrs old.

Jump to this post

@cwm1 I hope you been walking nonstop? I sure was wandering like a lost soul after my double trouble cancer diagnosis. I can relate to the crying, plus I was hyperventilating with the crying. Which I had never hyperventilated before in my life.

I have no siblings or parents left. Just a husband and 2 sons. My sons do not live near me at all..

Have you looked into the Livestrong program at all? They have people that help guide you through the double trouble nightmare maze you are dealing with. They also have a free 12 week YMCA workout program to help you keep your mind distracted with fitness trainers.
They helped me a lot when i could barely get out of bed. I used to think what for? The exercise program was a nice healthy distraction. Another thing I did was meet with a dietitian to help work out a nutritional plan to help focus on. Foods that help starve off Cecum cancer and Follicular Lymphoma.

You need to Focus on you right now. Your body needs you strong and focused to heal yourself.
Take the time to block out your stresses and regroup your strengths to heal.
Can you please let us know how your Dr visit goes on 7/25?

I been bouncing on, and off so I will watch for your post.
Praying for the best for you..
Jackie
.

REPLY
1 reply
Alma Villarreal | @mrsbv | Jul 24, 2019

@merpreb and to all of you beautiful women...I am going through my own medical issues and the possibility of Lupus, Thyroid Cancer and/or mouth cancer. My my doctor has gone away on vacation again like she normally does just about every other week and leaves for three weeks. In the meantime, I am sitting here going crazy just waiting to find out what else I have. I also live with a rare disease called stiff person syndrome that has many variants. I must be emotional because I am in tears, because no matter what - you all are very strong women and clearly are the definition of WARRIORS! You are all an inspiration to me. I lead a support group for those of us living with Stiff Person Syndrome, on Facebook since 2012. I had to stop working and retire in November 2011. When I found out that I had Stiff Person Syndrome, I just was in denial. It affected my job, I was told that my position from Court Operations Supervisor and Courtroom Deputy to our Magistrate Judge would need to go on to someone else who could be at work every day. I was not GIVING UP! I made a terrible choice and stopped taking all of my necessary medication and just needed one last good year. I only made it through six months. Our lives completely change. When I researched my illness....I could barely find anything on the web. which not many specialists are very familiar with this rare disabling condition. Shortly after I joined this support group I was asked to be a part of the Admin Team. I have only let my feelings out to the public just a few times. Other than that I am doing everything to the best of my ability to help all of our SPS patients and families. I am very close to my mother-in-law and my husband's family. My mother-in-law gives takes very good care of me. My Daddy passed last year due to Cancer. My mother-in-law also had cancer, My Grandpa and Grandma passed away from Cancer, along with one of my Aunties and an Uncle. I have another uncle who just found out he has stage 4 thyroid cancer. He is not well at al. It has been pretty rough seeing one member of our family after another pass due to this ugly disease. Yet, I stay strong and support, educate and Advocate for our group members. We have almost 2200 members; some are family and friends.

I apologize for going in circles, but I have been very sick and bedridden since the second week of this year. I tend to have bad nights like that. Today is one of them. Please pardon me for writing about one thing; then the other.

I wanted to be sure to tell you all that each of you are such an inspiration to me. I am so happy to have this opportunity to be a part of this social connect group. I love and appreciate how positive, caring and empathetic everyone is to one another. I am very fortunate to be surrounded by such a caring and compassionate group. My heart and prayers go out to all of you. I am honored to be in this group. I need to get healthier, so I can spend more time on the group. I shall definitely need to set up a deadline for each challenge I have on my list.

Please know that although I have not ever spoke with any of you, I am very happy I logged on, read your "true stories", and love to see the determination and fight and compassion you have for each other. May our Heavenly Father bless you and your families.

REPLY
2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 24, 2019
In reply to @mrsbv "@merpreb and to all of you beautiful women...I am going through my own medical issues and..." + (show)
@mrsbv

@merpreb and to all of you beautiful women...I am going through my own medical issues and the possibility of Lupus, Thyroid Cancer and/or mouth cancer. My my doctor has gone away on vacation again like she normally does just about every other week and leaves for three weeks. In the meantime, I am sitting here going crazy just waiting to find out what else I have. I also live with a rare disease called stiff person syndrome that has many variants. I must be emotional because I am in tears, because no matter what - you all are very strong women and clearly are the definition of WARRIORS! You are all an inspiration to me. I lead a support group for those of us living with Stiff Person Syndrome, on Facebook since 2012. I had to stop working and retire in November 2011. When I found out that I had Stiff Person Syndrome, I just was in denial. It affected my job, I was told that my position from Court Operations Supervisor and Courtroom Deputy to our Magistrate Judge would need to go on to someone else who could be at work every day. I was not GIVING UP! I made a terrible choice and stopped taking all of my necessary medication and just needed one last good year. I only made it through six months. Our lives completely change. When I researched my illness....I could barely find anything on the web. which not many specialists are very familiar with this rare disabling condition. Shortly after I joined this support group I was asked to be a part of the Admin Team. I have only let my feelings out to the public just a few times. Other than that I am doing everything to the best of my ability to help all of our SPS patients and families. I am very close to my mother-in-law and my husband's family. My mother-in-law gives takes very good care of me. My Daddy passed last year due to Cancer. My mother-in-law also had cancer, My Grandpa and Grandma passed away from Cancer, along with one of my Aunties and an Uncle. I have another uncle who just found out he has stage 4 thyroid cancer. He is not well at al. It has been pretty rough seeing one member of our family after another pass due to this ugly disease. Yet, I stay strong and support, educate and Advocate for our group members. We have almost 2200 members; some are family and friends.

I apologize for going in circles, but I have been very sick and bedridden since the second week of this year. I tend to have bad nights like that. Today is one of them. Please pardon me for writing about one thing; then the other.

I wanted to be sure to tell you all that each of you are such an inspiration to me. I am so happy to have this opportunity to be a part of this social connect group. I love and appreciate how positive, caring and empathetic everyone is to one another. I am very fortunate to be surrounded by such a caring and compassionate group. My heart and prayers go out to all of you. I am honored to be in this group. I need to get healthier, so I can spend more time on the group. I shall definitely need to set up a deadline for each challenge I have on my list.

Please know that although I have not ever spoke with any of you, I am very happy I logged on, read your "true stories", and love to see the determination and fight and compassion you have for each other. May our Heavenly Father bless you and your families.

Jump to this post

Hello @mrsbv,

I am sorry to hear of all of the health issues you are facing right now. I noticed that Connect mentor, @johnbishop previously posted the following websites where you could find others dealing with stiff-person syndrome. Below there is also a website where you can find doctors who specialize in stiff-person syndrome. Will you please open those links and take a look?

I would also encourage you to seek a second opinion if you don't feel your needs are being responded to in a timely way. If you live near a multi-disciplinary health facility (like a university medical school or a Mayo facility) I would encourage you to go to this type of medical institution in order to seek another opinion and treatment.

> Groups > Brain & Nervous System > Stiff Person Syndrome
— https://connect.mayoclinic.org/discussion/stiff-person-syndrome/

I'm not sure if you have tried this website but the American Association of Neuromuscular & Electrodiagnostic Medicine website has a link to search for a specialist: https://www.aanem.org/Patients/Find-a-Specialist. Have you been diagnosed with Stiff Person Syndrome?

Will you post again?

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 24, 2019
In reply to @travelgirl "@cwm1 I hope you been walking nonstop? I sure was wandering like a lost soul after..." + (show)
@travelgirl

@cwm1 I hope you been walking nonstop? I sure was wandering like a lost soul after my double trouble cancer diagnosis. I can relate to the crying, plus I was hyperventilating with the crying. Which I had never hyperventilated before in my life.

I have no siblings or parents left. Just a husband and 2 sons. My sons do not live near me at all..

Have you looked into the Livestrong program at all? They have people that help guide you through the double trouble nightmare maze you are dealing with. They also have a free 12 week YMCA workout program to help you keep your mind distracted with fitness trainers.
They helped me a lot when i could barely get out of bed. I used to think what for? The exercise program was a nice healthy distraction. Another thing I did was meet with a dietitian to help work out a nutritional plan to help focus on. Foods that help starve off Cecum cancer and Follicular Lymphoma.

You need to Focus on you right now. Your body needs you strong and focused to heal yourself.
Take the time to block out your stresses and regroup your strengths to heal.
Can you please let us know how your Dr visit goes on 7/25?

I been bouncing on, and off so I will watch for your post.
Praying for the best for you..
Jackie
.

Jump to this post

@travelgirl Some great words of wisdom and practical experience for @cwm1. Exercise, especially in groups, like at the Y or community centers, are great ways to reduce the stress that comes with a cancer diagnosis. I'm a great believer in exercise as well and practice it regularly.

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