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?

Hi merpreb. I am one month from completing everything, lumpectomy, chemo and radiation. I too feel the fear everyday. I'm on anti anxiety meds but I don't think they really help. I saw my surgeon this week and she said everything looks great and clear but I still worry. I'm not only afraid of reoccurrence but seem to be afraid of just about everything like if I'm eating to much sugar, carbs, can I have a beer with my husband and the list goes on and on and on. 🙁 I hate this new me but don't know how to fix it. Just take one day at a time I guess.

REPLY
@karendb

Hi merpreb. I am one month from completing everything, lumpectomy, chemo and radiation. I too feel the fear everyday. I'm on anti anxiety meds but I don't think they really help. I saw my surgeon this week and she said everything looks great and clear but I still worry. I'm not only afraid of reoccurrence but seem to be afraid of just about everything like if I'm eating to much sugar, carbs, can I have a beer with my husband and the list goes on and on and on. 🙁 I hate this new me but don't know how to fix it. Just take one day at a time I guess.

Jump to this post

@karendb – Karen, I have many of the same concerns and in addition some painful physical side effects from Arimidex. Starting tomorrow i'm going to go off Arimidex for two weeks to see if it is contributing to these things. I'll let you know the results.

REPLY

HI @sparklegram. I'm on arimidex for about a month now and no major concerns. A few aches and pains and a bit of insomnia but nothing I can't handle. I'm wondering if this AI can also attribute to depression. Oh well…..good luck to you and feel better soon.

REPLY
@alamogal635

@merpreb Found yesterday in the whole night that I was really feeling worried, apprehensive, and flat out frightened. It is for now a kind of mild PTSD. I take generic Prozac for depression andI guess this helps, but for some reason the doubts of "what ifs" are starting to creep in. Also as mentioned in another post of mine, I had the achy rib soreness that seems to be part of the post surgery recovery. It felt like a big lump of ribs on the right side that simply ached no matter what I did, or what pain pills I took. So, I am not anywhere near Little Miss Sunshine as I go through the healing process. Some days I worry about what might go wrong with the first post surgery CT scan, what if the surgery was not sufficient–have all the path reports and the detailed report from my kind surgeon. All reads well and no one on the medical team seems overly concerned, but I seem to lack a basic trust that I'm being told everything. That is purely conjecture on my part. I get kind of OCD about wondering all of the what ifs and that is not healthy for mind, or body. Will see my oncologist week after next and see if he knows of a local group that meets where these topics can be discussed in a safe environment. Also, am thinking that maybe a yoga class that is gentle and easy would be a good idea for getting back more motion. So, not to complain, but everything is never just wonderful–I do have my moments–many of them. There are few people except for this site with whom I can speak my mind and am learning to do that. Just wanted to let all know here that I am a cancer survivor who hopes and prays the future will be okay. I try to live each day as it comes, but it isn't easy. I find lots of strength in this group. Thank you all.

Jump to this post

@alamogal635 and karendb-Good morning. I know what you both mean in your descriptions of the feelings that you have both voiced. I know that it won't help when I say that all of these feelings are very normal after cancer treatments/surgery. When we are in the hospital all our of our needs are taken care of. We concentrate on recuperating, grinning and bearing exercises and walking the halls. I know that when I stepped out of the hospital door I felt like I was going from one world into one I knew nothing about. I'm sorry that I can't reassure either of you that these thoughts will leave you soon. They probably won't until you both have established more of a normal life within the confines of post cancer. They will diminish but not really go away. How can they? We all might get cancer again, and we will be continually reminded that we had cancer by all of the follow-up CT scans, mammograms, etc. Your fears will be more of a gentle tugging on your memories than a constant jabbing in the stomach. But for now, as you both are still new to this it's just part of recuperating. Your bodies have changed, your chemistry has changed and your minds have been scrambled with meds and all the new words and questions that you have asked and been asked.
I had a chest wall muscle cramp up on me for years. I had to stretch or rub it to ease it. I still feel twinges of it every now and then. I like that term, basic trust @alamogal635. Because why should you trust anything right now? @karendb, wouldn't you agree?
As you both heal please become more social so, at least have contact with things and people other than your cancer and treatments.
As you worry you might want to prioritize what you have control over. Make a list of things that you do have control over – what you eat, exercise, all your daily care. Then a list for things that you can't control. What to do with this? Well you can know that there is a difference between ruminating and worrying. Ruminating is great, we all have to think things over, it helps put things, at least, into semi- order and perspective. And it's fine to worry. It has taken me years not to dwell on my fear, years at ruminating and not sleeping, nightmares, and tests. About two weeks before my CT scan I get very afraid, and I expect this.
Somethings that might help are:
You can't control the future but if you know what is ahead of you you can prepare. Put your effort in learning what your follow up tests will be. This will help ease your approach and attitude. It will help your reactions. Becoming familiar with something will lessen the horrible feeling of "the unknown" and what if's.
Ask yourselves what "happens if" your fears will be realized? What will you do? How will you react?
Set up a plan to control your stress. What have you done before? Can you still do these things? Were they successful before? If not change them.
I applaud both of you for sharing your early fears. I wish that I had had Connect in the past, and do feel blessed to have it in my here and now!

REPLY

@merpreb, thank you so much for the advice and kind, understanding words.

REPLY
@sparklegram

@karendb – Karen, I have many of the same concerns and in addition some painful physical side effects from Arimidex. Starting tomorrow i'm going to go off Arimidex for two weeks to see if it is contributing to these things. I'll let you know the results.

Jump to this post

@sparklegram, thank you. Please let me know how you are feeling and good luck to you.

REPLY
@merpreb

@alamogal635 and karendb-Good morning. I know what you both mean in your descriptions of the feelings that you have both voiced. I know that it won't help when I say that all of these feelings are very normal after cancer treatments/surgery. When we are in the hospital all our of our needs are taken care of. We concentrate on recuperating, grinning and bearing exercises and walking the halls. I know that when I stepped out of the hospital door I felt like I was going from one world into one I knew nothing about. I'm sorry that I can't reassure either of you that these thoughts will leave you soon. They probably won't until you both have established more of a normal life within the confines of post cancer. They will diminish but not really go away. How can they? We all might get cancer again, and we will be continually reminded that we had cancer by all of the follow-up CT scans, mammograms, etc. Your fears will be more of a gentle tugging on your memories than a constant jabbing in the stomach. But for now, as you both are still new to this it's just part of recuperating. Your bodies have changed, your chemistry has changed and your minds have been scrambled with meds and all the new words and questions that you have asked and been asked.
I had a chest wall muscle cramp up on me for years. I had to stretch or rub it to ease it. I still feel twinges of it every now and then. I like that term, basic trust @alamogal635. Because why should you trust anything right now? @karendb, wouldn't you agree?
As you both heal please become more social so, at least have contact with things and people other than your cancer and treatments.
As you worry you might want to prioritize what you have control over. Make a list of things that you do have control over – what you eat, exercise, all your daily care. Then a list for things that you can't control. What to do with this? Well you can know that there is a difference between ruminating and worrying. Ruminating is great, we all have to think things over, it helps put things, at least, into semi- order and perspective. And it's fine to worry. It has taken me years not to dwell on my fear, years at ruminating and not sleeping, nightmares, and tests. About two weeks before my CT scan I get very afraid, and I expect this.
Somethings that might help are:
You can't control the future but if you know what is ahead of you you can prepare. Put your effort in learning what your follow up tests will be. This will help ease your approach and attitude. It will help your reactions. Becoming familiar with something will lessen the horrible feeling of "the unknown" and what if's.
Ask yourselves what "happens if" your fears will be realized? What will you do? How will you react?
Set up a plan to control your stress. What have you done before? Can you still do these things? Were they successful before? If not change them.
I applaud both of you for sharing your early fears. I wish that I had had Connect in the past, and do feel blessed to have it in my here and now!

Jump to this post

@merpreb Thank you for the above response. It does help. I am learning to take things a day at a time–really. What an upcoming T scan says this coming June is nothing I can control, so I try to just let it go–sort fo like putting it into a blood and proof off it goes. it isn't easy. Also, I recently found out that there is shame connected with lung cancer–at lest fro me. I was a smoker–smoke from age 18 until 45. I smoke at least two packs a day. Gave it up and felt a whole lot better. When I tell someone about my lung cancer and surgery, I sense a feeling of shame. It really doesn't make sense. However, knowing what I do about psychology, I can see where a lot of this would have come from past childhood indoctrination with being shamed. I will deal with this and will seek professional help for this. I'm by nature a loner, but do try and get out. Must MAKE myself go out more and socialize–church at least. Anyway, I read and reread your post and find it really uplifting and helpful. Thank you.

REPLY
@muffy

I have sensitive skin. I had this very same problem with one of my 4 scars being right under the bra elastic. What worked for me were 3 things: using "Scar Away" tape for 3 months (at least 22 hours out of 24 every day); going without a bra (for 8 1/2 months), and wearing tops under loose flannel shirts that were slightly, but comfortably, compressive (I hat anything tight and too close to my skin – I wore these inside out with the seam out). Then after 8 1/2 months I transitioned to Hanes Smooth comfort bra (a tip that I found from another lung surgery patient). Then finally back to a normal bra, although 1 yr, 8 months later I sometimes wear the comfort bras. I got mine at Target and also at Amazon. It's style WHG 796. So, did I feel comfortable not wearing a bra? No, but the tops and flannel shirts helped me to feel a little bit better than my t-shirts. Good Luck. BTW, all my scars are now flat.

Jump to this post

Don't know if I thanked you, but the tape is helping. One of m incisions is right under my breast hen a car goes. Dang it hurt. When I can I go braless, otherwise the gentle bra seems to be helping. I'll try in a few months the Hanes Smooth Comfort bra. I like your idea of flannel shirts inside out, but here in Texas it is too hot for flannel now. I'm thinking it might be good to get some camisole with built in shelf bras and wear cotton or similar shirts over them. Thank you. You have really helped.

REPLY
@alamogal635

@merpreb Thank you for the above response. It does help. I am learning to take things a day at a time–really. What an upcoming T scan says this coming June is nothing I can control, so I try to just let it go–sort fo like putting it into a blood and proof off it goes. it isn't easy. Also, I recently found out that there is shame connected with lung cancer–at lest fro me. I was a smoker–smoke from age 18 until 45. I smoke at least two packs a day. Gave it up and felt a whole lot better. When I tell someone about my lung cancer and surgery, I sense a feeling of shame. It really doesn't make sense. However, knowing what I do about psychology, I can see where a lot of this would have come from past childhood indoctrination with being shamed. I will deal with this and will seek professional help for this. I'm by nature a loner, but do try and get out. Must MAKE myself go out more and socialize–church at least. Anyway, I read and reread your post and find it really uplifting and helpful. Thank you.

Jump to this post

@alamogal635 – I'm with you on the guilt and shame. In my blog I go into it. It might help you. https://my20yearscancer.com/conversations-about-lung-cancer/
When someone asks if you smoked or tries to shame you walk away. Or ask them why they asked. I even told my Vet that her comment was mean because it shamed me and I could very well feel guilty by myself. No one should put anyone down, for anything.
That being said, have a great day. There are many reasons to feel guilty this is anew day so let's think of flowers! They at least don't sass people!

REPLY
@trixie1313

By any chance where you live, does your medical community have a Mindfulness Meditation group/classes offered? I signed up for myself and my husband and it has helped me tremendously in coping and with anxiety.

Jump to this post

@trixie1313 I do not know of any Mindfulness Meditation group/classes in my area. I do listen to meditation CDs & found some great restful meditation exercises on UTube.

REPLY

@lady1lake, That is a good suggestion for @trixie1313. YouTube has a lot of meditation exercises (even some for kids). Here is a link to several different meditation/mindfulness exercises, https://www.youtube.com/results?search_query=meditation+and+mindfulness+exercises.

REPLY
@hopeful33250

@lady1lake, That is a good suggestion for @trixie1313. YouTube has a lot of meditation exercises (even some for kids). Here is a link to several different meditation/mindfulness exercises, https://www.youtube.com/results?search_query=meditation+and+mindfulness+exercises.

Jump to this post

@hopeful33250 thank you for posting the links. The meditation exercises are a great way to relax & worry less.

REPLY

@merpreb Yesterday had my fist visit with my dear oncologist. he is a compassionate man and knows his field well. I was fully expecting him too say that he would do a CT scan in three months, then six months, etc. That is what I had read int he literature. He has suggested that the cancer found in my right lunch was so small and had not spread to tissue, or lymph nodes that I return for a CT scan kn 6 months, then if all is well a year, then 5 years. I was surprised and happy. Typical of me, after the fact I started to worry that maybe that is not soon enough. I trust my doctor and he's worked with a lot of this type of cancer as well as others. He is very pleased with the surgery and my recovery.I am too. Trust is difficult for me as I"ve mentioned in other posts. Just thought I'd put this out here. I feel good about his report, but still worried that maybe for some reason, I'm not important enough, or he's kind of taking this too lightly. I know rationally he isn't, but these doubts are trying to ruin his positive prognosis and my hopes for a good outcome. Just wanted to share this and see what others have to say. Thank you for letting me state my irrational doubts.

REPLY

@alamogal635– I'd like to say stop this but I know your history about trust. How about making a list of the pros and cons of what the problems are in your thinking? The CT scan results are wonderful! Congratulations! After my first lobectomy I was told that there wasn't any chemo for me. I felt just the same way! OMG I was really upset about it. I didn't feel complete. Had I known then what I know now I should have been thrilled. I wanted chemo, to be like "everyone else" lol
Trust your doctor! Even if you can't. He He took out your cancer so that you would live and have a great life. Why would he turn around and want you to have more tests when you don't need any? Doctors aren't necessarily going by the every 3 months and then 6 and then year anymore.
Please don't lose sleep over this unless your health changes! Does anyone else have feelings like this?

REPLY

@merpreb Thank you for your response. It is quite helpful. I do feel good about things today and the shadow of doubt seems to have receded. Maybe it just was good to getup and do something fun for myself for once. I don't mean seeing doctors, or going to the grocery store, but simply having my hair done. If I can figure out how, I'l post a picture so you all can see what I look like. Really, being social helps and will have a busy day of that tomorrow as well. I trust my doctors and will as the old saying go "let go and let God." Thank you again.

REPLY
Please login or register to post a reply.