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?

@alamogal635

All right folks, this is what I look like. Now you can put a face with the posts. I am about 98% gray and the blonde brightened up things and give it more body. Also letting the hair grow out.

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Pretty picture, I love your hair. I'm going gray also after covering my gray for 5 years. I love the time it saves and now I can wear a different color palette because other colors look better on me!

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Am such a newbie at all this I am not sure this si where my post should be. In march of 2019 had a VATS–right lobe removal– for a stage 1 lung cancer spot. Am doing well and since it was so small and caught early with no spread, my oncologist said we will wait until September for a CT. scan. That sounded great. I'm now thinking truly how soon really the CT scan will come in September and if I let myself, I start worrying about the "what ifs." Truth be told, I worry about recurrence, but often times try and NOT think about it. However, it looms in the back of my mind. I know that should cancer be found again, Iw ill deal with it, but the fear of it does NOT go away. Just wondering how others handle this sort of thing. Thank you all for your help.

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@alamogal635

Am such a newbie at all this I am not sure this si where my post should be. In march of 2019 had a VATS–right lobe removal– for a stage 1 lung cancer spot. Am doing well and since it was so small and caught early with no spread, my oncologist said we will wait until September for a CT. scan. That sounded great. I'm now thinking truly how soon really the CT scan will come in September and if I let myself, I start worrying about the "what ifs." Truth be told, I worry about recurrence, but often times try and NOT think about it. However, it looms in the back of my mind. I know that should cancer be found again, Iw ill deal with it, but the fear of it does NOT go away. Just wondering how others handle this sort of thing. Thank you all for your help.

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@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?.

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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.

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@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.

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Oh dear. You have your hands full. But your health is most important. These small lesions should come out whether they are bio-siblie or not. Do you have a sympathetic doctor? You need someone to hold you together! Thisistoo much worry. See if there is a social worker who can help.Good luck….

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@susu2

Oh dear. You have your hands full. But your health is most important. These small lesions should come out whether they are bio-siblie or not. Do you have a sympathetic doctor? You need someone to hold you together! Thisistoo much worry. See if there is a social worker who can help.Good luck….

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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.

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@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.

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@cwm1– Good morning. I hope that this finds you on a sunny beach. You are a super woman and in need of putting your foot down to some of your demands. I can't imagine how you are handling all of this.
First to your cancer- It sounds as if you might have Multifocal Adenocarcinoma of the lung. I have this and have survived 22 years after having many nodules that have come and gone and 4 that needed removal. Hopefully your type of cancer will be large enough to biopsy or the radiologist can tell if it is MAC (Multifocal Adenocarcinoma of the lung).
Your own health should come first but I think that under the present circumstances you need to think this too. If there is no way that you can turn your son out than he should be asked to take up slack by helping care for his grandparents. Your other siblings should also take part in this care. There are planes. It's a tough situation, I know. But you can't do everything and take care of yourself.
How about this, make two lists. One should be your top priorities and ones that you have control over.
Is it possible, that if your son isn't capable of caring for his grandparents, that they or you hire help to lessen your burden? Can you have food delivered for example, house keeping help, anything? The American Cancer Society can help with this, maybe your house of worship?
Then make a list with things that you have no control over- and put them in a drawer and forget about them until things change. I know that it won't stop your worrying about your son, but you have housed and fed him. He's warm and loved. The rest should be up to
Please, please don't assume so many duties-now it's your time to take care of yourself. This is a very difficult time for you and if you haven't asked the rest of your family to help, this is the right time and will help reduce your stress level., don't you think?

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@alamogal635

Am such a newbie at all this I am not sure this si where my post should be. In march of 2019 had a VATS–right lobe removal– for a stage 1 lung cancer spot. Am doing well and since it was so small and caught early with no spread, my oncologist said we will wait until September for a CT. scan. That sounded great. I'm now thinking truly how soon really the CT scan will come in September and if I let myself, I start worrying about the "what ifs." Truth be told, I worry about recurrence, but often times try and NOT think about it. However, it looms in the back of my mind. I know that should cancer be found again, Iw ill deal with it, but the fear of it does NOT go away. Just wondering how others handle this sort of thing. Thank you all for your help.

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You are beautiful. I guess in answer to your question, I live with my “new normal”. Every six months a glimpse into a mystery, hoping there’s no new sign of things developing, being ready to deal with whatever the outcome. But thankful there are oncologists and learning/teaching/research facilities ready to catch “it” before it goes too far. And thankful for blogs such as this which actually was, for me, the first step to a life-saving journey. This is where I first learned of the doctors at Mayo Clinic that diagnosed and surgically removed my Carcinoid Cancer. So, thank you to the brave survivors who share their stories in this way.

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@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.

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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.

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@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.

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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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@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.

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@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?

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@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.

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@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?

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