How do you really ever fully process a cancer diagnosis?

Posted by Denise @denisestlouie, Sep 15 7:25am

Today marks the end of the 10th week since I learned that I have cancer. Since then things moved very fast. I had a provider that understood the aggressive nature of my cancer and she managed to refer me to a oncology surgeon within a week and a half and because of someone else's misfortune of contracting covid before surgery I was able to have a total hysterectomy within 2 weeks following my diagnosis. Immediately after surgery my oncologist felt that we had caught this in an early stage and was very optimistic. But a week later the pathology came back stage 3A uterine clear cell carcinoma HER2+. Later that was refined to mixed clear cell serous carcinomas.

None of those words meant anything to me 10 weeks ago. Today they just run through my brain almost every single minute of every single day. I've already started a regiment of chemotherapy and have completed two cycles of six. My doctor tells me I have a great prognosis. He believes that with the chemotherapy, my lifestyle changes and maintenance therapy of herceptin. I have the potential to beat this cancer. However, I have scoured every paper I can find in PubMed and I see very little hope in those papers. I want to live my life believing that I can conquer this diagnosis and live a long life, But I find very little evidence in what I read that that is true or will be true.

10 weeks really isn't a very long time to wrap your head around a life altering diagnosis. How will I ever be able to live my life without constantly thinking about me and my mortality?

I am pulling out all the stops. I'm following everything my oncologist tells me to do. I also follow all the recommendations of my holistic practitioner. I work with the clinical licensed social worker every single week to address my feelings and vulnerability and sadness. I get up every morning and walk my dog 2 miles. I work with my trainer for strength training. I'm doing everything that I have read that has potential to lengthen my life. But I still feel so broken.
This week I meet with a another oncologist for a second opinion on the treatment and follow-up treatments. All I can do is keep searching for hope that I will not die from this particular disease. I know that I cannot see the future but I can't help searching for it. My mind just will not stop looking for ways to survive. One day I think I found the elixir of health and the next day my brain tells me Don't be foolish. You have no control over anything.

I guess I just put this out here hoping I will find somebody who has found the way forward and would share that with me.

I'm really afraid that I'm going to isolate my friends because I can't stop talking about myself. And it's so all over the board. One day I'm hopeful I've got this. Everything's going to be okay and the next day I damned myself.

I know I have the capacity to turn my thinking towards the positive. I just need a little bit of help getting there.

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

My heart breaks for you and I know how frightened you must be. I too have been diagnosed a few weeks ago with Uterine Cancer. They say the Grade is slow growing but they do not know the stage as everyone says staging and grade can change with pathology. I’m scheduled in a week for a total hysterectomy removing ovaries and tubes etc. praying it is contained and knowing God does heal is helpful to me. I have been researching though an have run across some resources that might help you. They are encouraging me at least, that cancer doesn’t have to be a death sentence. Look online for the following:

Chrisbeatcancer.com - he is a 20 year survivor of stage 111c colon cancer and also has a ton of YouTube interviews with other cancer survivors. It’s so encouraging to hear these stories and learn from what they did!

There is also another series out there that I am in the middle of by Ty Bolinger, title The Truth About Cancer. 9 parts very informative.

I am just starting this journey as well and we all need all of the encouragement we can get. I will be praying for God to equip you with the knowledge that we are not powerless. Don’t ever feel bad for focusing on your health and for reaching out!! May God’s peace and healing power flood you today!

God Bless! 🙏🏻

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@kkathysan

My heart breaks for you and I know how frightened you must be. I too have been diagnosed a few weeks ago with Uterine Cancer. They say the Grade is slow growing but they do not know the stage as everyone says staging and grade can change with pathology. I’m scheduled in a week for a total hysterectomy removing ovaries and tubes etc. praying it is contained and knowing God does heal is helpful to me. I have been researching though an have run across some resources that might help you. They are encouraging me at least, that cancer doesn’t have to be a death sentence. Look online for the following:

Chrisbeatcancer.com - he is a 20 year survivor of stage 111c colon cancer and also has a ton of YouTube interviews with other cancer survivors. It’s so encouraging to hear these stories and learn from what they did!

There is also another series out there that I am in the middle of by Ty Bolinger, title The Truth About Cancer. 9 parts very informative.

I am just starting this journey as well and we all need all of the encouragement we can get. I will be praying for God to equip you with the knowledge that we are not powerless. Don’t ever feel bad for focusing on your health and for reaching out!! May God’s peace and healing power flood you today!

God Bless! 🙏🏻

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Thank you for reaching out. I hope we can stay connected through our journeys. I booked marked your comments. I appreciate the resource referrals.

So from my experience, I had robotic assisted laparoscopic total hysterectomy. The recovery was fast. I'm posted menopausal so I don't miss those part and really nothing seems or feels different.

I'm using several complimentary therapies and life style changes to help reduce symptoms of chemotherapy (I refer to as therapy or treatment). The worst symptom for me is hair loss, but I know that going into it. I bought beautiful wigs.(Your insurance may cover them your Dr may not tell you that) I'm looking at all this as a personal experiment. So far example I haven't shaved my head although it coming out pretty fast now because I want to know how long it takes and if some hair will remain. I'm just wrapping what I have and cover it with a wig.

I had know idea how much I like my wigs! I wear them every day all day. I have 4 and a halo. I'm turning into Dolly Parton 😊

Emotionally I swing between very blue, sometimes doom and gloom to hopeful, optimistic and proud of myself . That that can happen within a few days. I think I'm at a place where I can stop searching for answers and start trusting the process, for now. I reserve the right to change my mind in the future.

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@naturegirl5

@denisestlouie I woke up thinking about you today. I was thinking about the action steps you have put into place. This is a life-altering diagnosis and so I'd like to share that it makes sense to me that your thoughts are filled with what is ahead. Hope is not simply optimism. Hope is because of the action you are taking. It's true you cannot change reality but you can change how you wish to respond. And you are doing just that.

Your remind me of myself. My cognitive style is analytical. I tend to get lost in the details - seeing the trees instead of the forest if you get my meaning. Like you I read the research literature about my diagnosis (endometrioid adenocarcinoma, initially Stage 1a, with a recurrence two years later), treatment options, and survival statistics. After all, I thought, I conducted my own research as a postdoctoral fellow and university professor (now retired) so I know how to do this. Except that when it is this personal, it was too easy to get lost in details that may or may not have applied to me. My radiation oncologist and gyn-oncologist both told me that by the time the research I was reading is published it is about 5 years behind the developments in the field. Think development of new medications. Clinical trials. Those are all in development. That's when I realized that what my doctors told me made sense. After all, when I did my own research it was at least 3 or 4 years until my results were published. Of course I stayed on top of my field by reading, networking, and talking with others about their work that had not yet been published. This is when I realized I have to let my doctors do their work. I wanted certainty. I wanted statistics. But I found ambiguity and more questions. I can research my doctors' recommendations but this wasn't and isn't my field. I found medical providers I could partner with and still do. I came to my appointments with my list of questions and they took their time answering them. They still do that as I'm now in surveillance where I return for appointments every 6 months.

I would like to offer this advice. Please tell yourself that your thoughts and emotions at this time in your life are very normal given the circumstances. You don't have to like it. It is just is. This is not the life you imagined you would have at this time in your life. I didn't either. My cognitive style - and from what I can tell, so is your cognitive style - is to move. You don't sit still. You are taking good care of yourself through your social connections. Your close friends do not tire of listening to you and very likely have their own private worries about you. I have a few good friends that I've known for many years who I place in that category.

I'll look for your post after you've seen your new consult on the 18th. Another action step you are taking. In the meantime, please keep posting here and allow us to continue to support you. Because we will do just that.

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Hi Helen,
I had my second opinion appointment today. They agree with all the therapies my doctor is doing. He also feels I'm in a good position to be fully cured. He also explained that immunotherapy might not be best for me because I have Crohn's disease, but it could be an option later, it's just more complicated.

He asked if I wanted to stay with my current Dr or have their practice take over my care. I got all teary eyed . I really like the person that my Dr is. He has the ability to calm me down when I'm freaking. I feel like he's really interested in the dietary changes I've made and and the strategies I'm using for recovering from the therapy every 3 weeks.

So I am settled for now. I'm staying with my Dr . I just have to trust the process. I doing all I can to help it by staying fit, eating nutritiously and keeping up on my mental care. I'm doing all the things.

REPLY
@denisestlouie

Thank you for reaching out. I hope we can stay connected through our journeys. I booked marked your comments. I appreciate the resource referrals.

So from my experience, I had robotic assisted laparoscopic total hysterectomy. The recovery was fast. I'm posted menopausal so I don't miss those part and really nothing seems or feels different.

I'm using several complimentary therapies and life style changes to help reduce symptoms of chemotherapy (I refer to as therapy or treatment). The worst symptom for me is hair loss, but I know that going into it. I bought beautiful wigs.(Your insurance may cover them your Dr may not tell you that) I'm looking at all this as a personal experiment. So far example I haven't shaved my head although it coming out pretty fast now because I want to know how long it takes and if some hair will remain. I'm just wrapping what I have and cover it with a wig.

I had know idea how much I like my wigs! I wear them every day all day. I have 4 and a halo. I'm turning into Dolly Parton 😊

Emotionally I swing between very blue, sometimes doom and gloom to hopeful, optimistic and proud of myself . That that can happen within a few days. I think I'm at a place where I can stop searching for answers and start trusting the process, for now. I reserve the right to change my mind in the future.

Jump to this post

Oh, my I love your attitude, Denise! You look so young in your picture; I would not have thought of you as post-menopausal. Enjoy those wigs 'Dolly' !!

I too am post-menopausal, 71 yrs. old, wow that's hard to believe when I say it! haha! So yes, that is my attitude exactly, I do not need any of those organs anymore so I'm thankful there is a surgery to help resolve the issue. I am also having the Davinci Robotics surgery and am hoping that I recover quickly like you. I don't normally recover from anything very quickly, but I have heard it is much easier to recover from. They do it as a day surgery here in Austin, TX! I was a bit shocked at that, it won't be long they will be doing it drive thru' !!! 🙂

I am busy learning how to juice vegetables and fruits daily and adjusting my diet to a more nutrient rich diet. So, I'm learning a lot, and I think it will be so beneficial for me in the long run. I've had a history of bad health starting in my 30's with Guillian Barre' Syndrome, Chronic Epstein Barre' virus, and Thyroid issues, which have plagued me for years. I am aware that Chronic Epstein Barre' among other things can encourage cancer development, but I am very aware my lack of discipline in diet choices, no matter how many supplements I downed, more than likely has had a huge impact on the appearance of cancer in my body now. So, my main focus now is to rebuild my immune system so I can regain my health and energy.

Please do stay in touch and keep us all posted on your progress. I'm praying within the next year we all look back on this journey, and see tremendous growth in our spirits, from all we have learned!

God Bless! Kathy

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@denisestlouie

Hi Helen,
I had my second opinion appointment today. They agree with all the therapies my doctor is doing. He also feels I'm in a good position to be fully cured. He also explained that immunotherapy might not be best for me because I have Crohn's disease, but it could be an option later, it's just more complicated.

He asked if I wanted to stay with my current Dr or have their practice take over my care. I got all teary eyed . I really like the person that my Dr is. He has the ability to calm me down when I'm freaking. I feel like he's really interested in the dietary changes I've made and and the strategies I'm using for recovering from the therapy every 3 weeks.

So I am settled for now. I'm staying with my Dr . I just have to trust the process. I doing all I can to help it by staying fit, eating nutritiously and keeping up on my mental care. I'm doing all the things.

Jump to this post

@denisestlouie I was thinking about you today and hoping that you would post. Getting this second opinion certainly validated your treatment plan with your current Dr. It is very encouraging that this second doctor said that you are in a "in a good position to be fully cured".

It sounds like you have a very warm and supportive relationship with your current doctor. I'd work with an emotionally distant doctor if I thought/knew their expertise was very much worth it. In fact, I have done that although not with cancer. It didn't "feel" all that great but I knew the medical care was good. You have both and now as you wrote you can trust the process knowing that you are doing everything possible to support your health.

This has been a very productive day for you. Thank you for sharing it with me.

REPLY
@kkathysan

Oh, my I love your attitude, Denise! You look so young in your picture; I would not have thought of you as post-menopausal. Enjoy those wigs 'Dolly' !!

I too am post-menopausal, 71 yrs. old, wow that's hard to believe when I say it! haha! So yes, that is my attitude exactly, I do not need any of those organs anymore so I'm thankful there is a surgery to help resolve the issue. I am also having the Davinci Robotics surgery and am hoping that I recover quickly like you. I don't normally recover from anything very quickly, but I have heard it is much easier to recover from. They do it as a day surgery here in Austin, TX! I was a bit shocked at that, it won't be long they will be doing it drive thru' !!! 🙂

I am busy learning how to juice vegetables and fruits daily and adjusting my diet to a more nutrient rich diet. So, I'm learning a lot, and I think it will be so beneficial for me in the long run. I've had a history of bad health starting in my 30's with Guillian Barre' Syndrome, Chronic Epstein Barre' virus, and Thyroid issues, which have plagued me for years. I am aware that Chronic Epstein Barre' among other things can encourage cancer development, but I am very aware my lack of discipline in diet choices, no matter how many supplements I downed, more than likely has had a huge impact on the appearance of cancer in my body now. So, my main focus now is to rebuild my immune system so I can regain my health and energy.

Please do stay in touch and keep us all posted on your progress. I'm praying within the next year we all look back on this journey, and see tremendous growth in our spirits, from all we have learned!

God Bless! Kathy

Jump to this post

@kkathysan It is amazing that a surgery as involved as a hysterectomy can be done in one day? It won't be in my lifetime (I'm just a year older than you at age 72) but I maybe drive-thru surgery is on the horizon?

I've tried over the years to eat a healthy diet. I certainly became more serious about it after I was diagnosed with endometrial cancer in 2019 and met with a nutritionist who specialized in cancer. It's difficult, isn't it, to be that strict with yourself on a daily basis? Recently a nutritionist who works with my Integrative Medicine doctor told me that if I can stay about 80-90% compliant with my health diet then I'm doing well. If I decide to eat a little piece of cake or a scoop of ice cream then I can add something healthy along with it such as a handful of nuts.

It's possible that your prior diet or health challenges contributed to the development of cancer. I've thought the same but honestly my risk factors were few. Maybe there is a genetic component that has not yet been identified? I have to tell myself that at this point in my life there is nothing I can do to change that past. I can be goal-oriented for the future which is exactly what you are doing.

Please keep me posted on your surgery. I'm hoping that you too will recover as quickly as most everyone here has shared. Has a date been set for the surgery?

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Denise,
I think you are awesome in all that you are doing. You seem to be doing all the right things.
I was diagnosed with pancreatic cancer in June of 23. I had chemo for 6 mo, and then surgery on Feb 15, 2024, and as far as they can measure, I have been cancer free for 6 months. When many think of pancreatic cancer, they immediately think death sentence. I am realistic knowing the cancer could come back.
When I was first diagnosed, I thought I was going to die and had no hope - everyone I had ever known with pan cancer had died from it.
What really gave me hope is one of Lynn Eib's books, titled Finding the Light in Cancer's Shadow - Hope, Humor, and Healing after Treatment - even though I read the book at the beginning of my treatment, it gave me much hope. Lynn Eib has written another book, When God and Cancer meet - true stories of hope and healing, which I have started reading.
You are doing everything you can, keep the cancer away, and that's all you can do.
Advice was given to me, I think through one of Lynn Eib's books, to make memories with those you love--- that was good advice for me.
I had to wear a wig for a time. I love your wig - it looks really nice.

REPLY
@katiegrace

Denise,
I think you are awesome in all that you are doing. You seem to be doing all the right things.
I was diagnosed with pancreatic cancer in June of 23. I had chemo for 6 mo, and then surgery on Feb 15, 2024, and as far as they can measure, I have been cancer free for 6 months. When many think of pancreatic cancer, they immediately think death sentence. I am realistic knowing the cancer could come back.
When I was first diagnosed, I thought I was going to die and had no hope - everyone I had ever known with pan cancer had died from it.
What really gave me hope is one of Lynn Eib's books, titled Finding the Light in Cancer's Shadow - Hope, Humor, and Healing after Treatment - even though I read the book at the beginning of my treatment, it gave me much hope. Lynn Eib has written another book, When God and Cancer meet - true stories of hope and healing, which I have started reading.
You are doing everything you can, keep the cancer away, and that's all you can do.
Advice was given to me, I think through one of Lynn Eib's books, to make memories with those you love--- that was good advice for me.
I had to wear a wig for a time. I love your wig - it looks really nice.

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Thank you Katie Grace. I am so thrilled that you are cancer free and yes I would feel the same with that diagnosis. It's scary.

I have to remind myself that I am living now and because I'm alive I should be celebrating not dreading the inevitable. Everyone's time comes to an end. We know that as children, but until now I didn't think about it.

I also think my morbid thoughts are strongest after therapy when my body is inflamed and aches. All this week I have felt good, normal. I'm not having thoughts about death running through my head all day.

I called my sister and asked her to remind me when I'm blue that it's going to pass once the drugs have run through my body

In life I have mostly been Pollyanna like. I can get there again.

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@denisestlouie @katiegrace Thank you for both for encouraging and supporting one another. You both are models of the vision and purpose of Mayo Clinic Connect.

KatieGrace, Thank you for the references by Lynn Eib. These are all new to me and I'm going to look those up.

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@naturegirl5

@kkathysan It is amazing that a surgery as involved as a hysterectomy can be done in one day? It won't be in my lifetime (I'm just a year older than you at age 72) but I maybe drive-thru surgery is on the horizon?

I've tried over the years to eat a healthy diet. I certainly became more serious about it after I was diagnosed with endometrial cancer in 2019 and met with a nutritionist who specialized in cancer. It's difficult, isn't it, to be that strict with yourself on a daily basis? Recently a nutritionist who works with my Integrative Medicine doctor told me that if I can stay about 80-90% compliant with my health diet then I'm doing well. If I decide to eat a little piece of cake or a scoop of ice cream then I can add something healthy along with it such as a handful of nuts.

It's possible that your prior diet or health challenges contributed to the development of cancer. I've thought the same but honestly my risk factors were few. Maybe there is a genetic component that has not yet been identified? I have to tell myself that at this point in my life there is nothing I can do to change that past. I can be goal-oriented for the future which is exactly what you are doing.

Please keep me posted on your surgery. I'm hoping that you too will recover as quickly as most everyone here has shared. Has a date been set for the surgery?

Jump to this post

I love the dietary changes that I have made. I also needed help to understand how food impacts health and worked with a dietian who works with people who have IBD. I have learned to love most of the new flavors profiles.

Here's a treat that I use to replace ice cream and maintain or increase my weight. ( After being slightly plump for 20 years I'm now very thin and have to pay attention to my weight to stay in a healthy rage)
One tablespoon if chocolate almond butter (look for one that doesn't add sugar or very little added sugar) one table spoon of almond butter. Lilly's chocolate baking chips with stevia. Crushed walnuts and berries, my favorite in the dish is raspberry.

It's creamy healthy and oh so good. It's not cold but it has all the other goodness that ice cream has.

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