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?

She just has little weakness on her legs …so she is getting massage daily😊

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@samanthaezu

She is walking around 😊

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That's wonderful Samantha. When does she see her doctor next? When is her next CT scan?

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@samanthaezu

She just has little weakness on her legs …so she is getting massage daily😊

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Samanth- I bet that she is grateful for that! It will keep her circulation stronger to help the weakness.

Liked by samanthaezu

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She enjoys when I give her a massage…..hope you too you doing good there

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Samantha- Thank you. Right now I feel very good. But I know that I could use a massage every now and then 🙂 Are you interested?. I have a very complex type of cancer that has many sub-groups. All the new research is showing that Multifocal Adenocarcinoma of the lung is a stage 4 cancer. I have it in both lungs. It means that I have many small precancerous/cancerous cells at one time. Some come and go, some have to be medically removed. The ones that don't grow stay put until they change. It's a different type of metastasis that your mom has. Samantha- You told me that your mom has stage 4 lung cancer too.
I do not believe that diet will have much of an affect on your mother's health or outcome at this point. Stage 4 cancer means that the cancer has spread throughout her body. Since she has chosen not to receive any treatment to stop her cancer like chemo or radiation then her care will be to just keep her comfortable and as much as possible, pain free. Don't pay any attention to diet, what she eats and drinks should be only what she wants, not what is dictated. Please google stage four lung cancer and read what metastatic lung cancer means. When is her next CT scan?

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@eewtao

And good morning to you. It's a different feeling to get a diagnosis of recurrence. Not the same quality of fear as with the first, but a different flavor of fear. The undercurrent of dread that I didn't realize I was hauling around with me until it surfaced powerfully and I was able to identify it and name it. The dread I am still carrying but want to address. My treatment – craniotomy in 2006. No chemo or radiation. Endoscopic endonasal surgery in 2015, followed by additional time in hospital with septic shock. Then a stint in hospital to remove a kidney that seemed to have a mass. It was benign, but they didn't put my kidney back in :)! Then back for gamma knife radiation to brain. There are pieces of the original tumor still in my head, so I live with watchful waiting. My original surgeon said, "go out and live your life", but to me this was not helpful. I don't think he really knew what he was saying to me. How does one live a life that has been so profoundly altered!?! And that, Merry, is what spoke to me in your blog post. That you've been on that journey. I am searching for clues that will work for me. Thank you.

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@eewtao, I'd like to add my welcome to you as well. I hope you don't mind, but a tagged you in another discussion in the Brain Tumor group here: https://connect.mayoclinic.org/discussion/optic-nerve-meningioma-patients/?pg=3#comment-248995 Another member was asking about treatment options, many of which you had. You may be a resourceful connection for her.

Welcome to @jeanadair123. You have a very unique situation in having a doctor care for you who has also had cancer. Have you heard the term "Scanxiety"? I don't know who coined the term or when, but I think every person who has cancer experiences it – the uneasiness waiting scans during and after treatment.

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Hello Everyone- I am loving all the responses to my post. I think that when we suffer we feel isolated and alone. Many of us can't find words to describe how we feel. How do you describe horrible fear, loss, the fear of death and so many other feelings? We aren't brought up to express our feelings about such non-concrete things. So how do we go about realizing what they are and expressing them? How do we go about not feeling alone? Are we the only alphabet letter left in our soup? Of course not! We are one species with many many differences but feelings are pretty universal. We are a very self-centered species that think that only "I" feel this way. When I realized this, I am ashamed to say, as an adult, I realized that others were feeling the same thing I was. Maybe a bit different because we are, after all individuals. When I'm afraid of my next CT scan coming up in January I know that I am not alone in my fear of recurrence. There's even a word for it, Scanxiety. We are not ever alone because there is always someone, especially on Mayo Connect, to connect with us, who understands and feels what we do. So we all need to voice those feelings, to invite people to know that they aren't alone or isolated.

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@merpreb

Good morning Cindy- I am so glad that my blog has helped you feel like you are not alone. I can't imagine what else other than fear, anxiety, tension and depression you could feel after a diagnosis of cancer, or any other major illness. We have not only been told that our lives might be in jeopardy but then we are told that we have to have an operation/treatments where we lose a part of our bodies. And it doesn't really matter if those parts are inside or outside (although this makes it worse ), it's still a loss. Hey, give that back to me! That's mine! I've had it all my life! I don't care if it's rotten! lol
And on top of this you are dealing with your husband's cancer. I consider all cancer serious and how can you not be a bit "down in the mouth" now with all that he is going through? Is he in treatment and what kind of cancer does he have.

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I had just recovered from my mastectomies and was pulling myself back together when my husband started having odd symptoms (fainting spells, tremors, etc). We spent two years trying to discover the cause. He was pretty much spending his days sleeping and unable to live his life. Oddly, it was during a routine lung scan for his COPD when we discovered he had a tumor in his lung. During a biopsy to determine if the tumor was cancer or benign, my husband had one of his fainting spells and they diagnosed a heart condition. He has had heart surgery now and his symptoms have resolved greatly. However, they have no idea what type of cancer my husband has. It has been a full year and we've gotten every diagnosis from Stage 1 lung to Stage Four terminal cancer of unknown primary. We are settled now on Stage Four Unknown Primary. The doctors (3 different oncology groups and much testing) and they don't know. They've offered and taken off the table every treatment option (except medical marijuana, which we are using). They won't do radiation to the tumor and lymph node because they don't want to eliminate that possibility down the line (?), they won't do surgery and they are hesitant to do chemo (as are we) because they could use multiple drugs, most of which could be wrong and not have any positive effect. So we wait and do PET scans every 3 months. The only positive we've had in the past 12 months is that the tumor and lymph node activity goes down each 3 months and we can only attribute that to two possibilities….either the marijuana is holding it off or reducing the cancer or it might have been a cancer that would either recede on it's own or is just waiting to explode at some point. It's been the most frustrating experience of our lives. We've been told he has a cancer that is at the worst possible stage but there is no treatment, just waiting to see when and how bad it will become. We can't plan, we can't fight, we just have to wait……..the doctors are truly baffled. We had one doctor walk out on us and have had to find new doctors and fight an oncology system that is not prepared to treat cancer when they can't identify it and follow a protocol. From the Mayo Support site I have found several cancer survivors and caregivers where there are misdiagnosis and similar paths in some ways but a cancer where the primary site of origin isn't detected is fairly rare, so on we trudge.
It's hard to have cancer but if you know what your options may be and can make decisions on a path and your future, at least you have a 'path'…..we don't even have that so we live day to day, not knowing what will happen and it's emotionally exhausting. We were told my husband had months to live, maybe but we are celebrating another holiday season together and hoping we can find and identify the cancer source or perhaps it will continue to recede (wouldn't that be nice) and move on cautiously with our lives.

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Hi Cindy- I have heard from some other people their frustrations with the oncology departments when they make either the wrong diagnosis or when they can't help with one. I'd want to scream because I always need to know EVERYTHING! I am tough on my doctors. Have you been to just one medical facility or have your tried others?
Cancer research has come so far from : https://www.cancer.org/cancer/cancer-basics/history-of-cancer/sixteenth-to-eighteenth-centuries.html
Research is far from perfect and underfunded. It also involves human interpretation, the handling of specimens and instruments. Often the latest equipment isn't available or people can't afford to go to the "best" places. Also, there is no cure! Medical personnel are finding that cancer is much more complex than they expected and there are more sub-cancers with every year. Medicine isn't perfect.
When our faith in our doctor's knowledge is questionable it makes every thing even worse. I am so very sorry that you are struggling like this. And you are so right, having a path,at least , gives a way forward so you can live your life as best as you can. When you don't have a path it's like wandering around a desert with no traffic signs.
I wish you a peace this season with your family and wish you both the best possible outcome.

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Does anyone ever get over multifocal adenocarcinoma or our lives going to be ct scans. We can never be considered cancer free can we. I go for my ct scan on Monday morning and then see the dr on Tuesday. This waiting between scans is the hardest. I started going to a counselor when I met her at pulmonary rehab. She’s been a life savior and I talk about everything. So usually schedule apps with her quite often. I could write a lot more but I know everyone in here has health issues and some of you are a lot worse off than I. So my heart and prayers go out to you as I know what you are going through and remember the good Lord is right beside you

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Sakota- Multifocal is a category of lung cancer that since 1960 was a redefined bronchioloalveolar carcinoma when it was discovered that people could have more than one lesion. Here is some information about it: http://www.hematologyandoncology.net/archives/september-2014/managing-multifocal-bronchioloalveolar-carcinomalepidic-predominant-adenocarcinoma-changing-rules-for-an-evolving-clinical-entity/

For now, since there really haven't been much published, if anything at all, about longevity with multifocal adenocarcinomas. I was actually looking for that yesterday. I was like, "how long do I have, how long?"
I'll live with CT scans over the alternative. I wish you well too and hope that your holiday is a good one. But let's keep in touch here. Hopefully there will be others joining int he near future.

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@jeanadair123

That is very interesting what you said. I have had 3 cancers and although one try’s to live one life there is always a fear each time you have an mri or Ct. I recently went to a new doctor the other day as I have always been so positive and happy lately I don’t seem to be my normal self it’s hard to explain, my doctor who also has had cancer asked if I feel that the things that used to do to make me happy do not anymore. Boy did he hit the nail on the head. He said it is normal to feel anxiety and a little depressed after all I have been through. Finally someone who understands. Just to let you know you are it alone.

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Interesting. I am on my second cancer – fist lung five years ago, now liver. Now there is also breast lesion we are setting aside until we deal with treatment for number two. I had no idea this could even happen. Very depressed, very anxious, very angry, probably in permanent denial. Not suresure how to take any of this.

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I could use some help here. I can not sleep more than four hours any more. I awaken and cannot get back to sleep again. Currently tale low dose xanax but only as needed to get back to sleep. I want no dependencies.

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@padovani- Welcome to Mayo Connect! I'm sure that you feel all of these things and I wish that you didn't have to! My advice for you right now is to take just one day at a time. Do you know what your treatment will be for your liver cancer? Is it a primary or have they biopsied it?
Here is a link that you might find helpful: https://www.verywellhealth.com/lung-cancer-spread-to-the-liver-2249263

I also never thought that a recurrence would happen. I had changed my life around and was "doing all the right things". Someone needs to redefine that saying.
For the time being, until this is under control do you feel like you would want to ask for medicine to help you get your feelings under control? It might help you see thing more clearly I think. Your denial will come and go but your other feelings will take a bit of time. I love the quote, "The difficult we do immediately, the impossible takes a little longer." I had to look at this on my refrigerator every day so I might slow down.

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@padovani

I could use some help here. I can not sleep more than four hours any more. I awaken and cannot get back to sleep again. Currently tale low dose xanax but only as needed to get back to sleep. I want no dependencies.

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@padovani- Unfortunately many sleep meds are very addictive. Have you considered taking a long term anti-depressant during the day? I will last all day into the next when you take your next one. Xanax might be wearing off after 4 hours. Sleep habits are difficult to break. I know when I don't get very steady sleep I'm a mess. Without sleep any other problems are exaggerated.

Good sleep habits are very important: https://www.sleepfoundation.org/sleep-tools-tips/healthy-sleep-tips

Has anything happened to set this off? Do you have any other problems that can be causing this? Have you spoken to your doctor about it?

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