How do you really ever fully process a cancer diagnosis?
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.
I have no experience with this condition so I’m afraid I can’t offer you any suggestions or links for information, however I just wanted to comment on how encouraging your words are. You certainly seem to be well informed and on track to recovery. It’s only been a short while since your diagnosis. So, I would imagine it takes time to process all the emotions. I hope others who went through what you have will chime in here. I bet your friends would welcome the opportunity to listen and provide you support, love and encouragement. You sound like an ideal friend to me.
I see a therapist that I share my health anxiety with and he reminds me to do all I can to advocate for my health care needs, then find solace in that I have done all that I can. I try to focus on that in my internal dialogue.
I do wish you much success with your recovery and peace of mind moving forward. You were so on point about how none of us knows our fate in life. We do all the right things and hope for the best. I wish all the best for you. Take care. I’ll look forward to seeing your posts.
@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.
Thank you, Helen. Your words impact me deeply. I'm so glad you have taken an interest in me. I feel like a little girl who is lost and you are the kind stranger her is helping find my way home.
I know I'll be okay no matter what happens because I've always figured out how to be okay in the past. It just so difficult to do and sometimes I'm just tired of changing my plans and perspectives, but I can and I will. Thank you for your kindness.
The picture is me in my new hair piece. See I have means to make all this tolerable.
Thank you
@denisestlouie I think you will find a way forward in a manner you can cope with because you want to. You have come so far, and done so much already! It is so very normal to want to talk about it all the time. When you’re ready that need will probably lessen. I finally got so tired of my “navel gazing” that I knew it was time to take action to help move away from that. But 10 weeks is still way early. I talked with friends and family, and then reached out to others with cancer, and then “talked” it out here on the Mayo connection. Earlier this year I had actually decided to not view this forum until 3 in the afternoon as I sometimes get caught up in the issues and it waylays my day. (This morning, though, I got a message about a friend with cancer, which brought me here now).
I’m two years out from diagnosis and I know I can be going along fine having set aside the worries when some event, news, scan, draws me back in. I realize that there are times that I might need/want to go back and re-read the statistics and research or look for new studies. But I accept that it is part of the journey, it’s how I process things, and I give myself the grace to spend some time on a topic that is important to me. Recognizing that gives me the freedom to do a better job of setting it aside and getting on with life. Because I know that when I really need to, it’s okay to take time to take care of that need.
Wishing you the very best! And I really like your new hair! Great choice of color and length for you! Flatters your nice smile!
Thank you!
@denisestlouie Wow, I love your hair and your hat. You look so stylish.
Thank you for letting me know that my words were helpful and meaningful to you.
How do you deal with the knowledge that you have cancer? I’d like to share what has helped me. But it’s not for everyone. Please keep that in mind.
When I was diagnosed with ovarian cancer, I knew my odds weren’t great. I realized I could be dead in two years.
“This could be my last Christmas.”
“I’ll never see any grandchildren.”
I’d have to make arrangements for the care of a loved one with dementia who would now likely outlive me.
Sounds depressing. I was scared, but I wasn’t depressed. I did not give up. I was very aggressive about treatment. I wanted the best treatment, the most treatment. I just wasn’t very hopeful that it would work.
After surgery and chemo, my CA-125 decreased, but never went down to normal. My scans always had little spots “to keep an eye on.” I was never NED (No Evidence of Disease).
Two years later, when everything slowly worsened, I went through another six cycles of chemo. Then was scheduled for a PET scan afterwards, to see if the chemo had any effect.
Driving to that PET scan with my husband was my lowest point. I had to explain to him that the scan would show either that the cancer was stable or that it was worsening. I wanted to prepare him: if the cancer has spread while on chemo, the only thing the doctors have left to offer is hospice.
We saw my oncologist after the scan. “All clear!” she said. “What?!?!” All the previous hot spots on my last scan were gone! NED! I was totally unprepared for that. It was quite a shock. A wonderful, happy shock.
Cancer patients are always encouraged to hope for the best and “THINK POSITIVE!!!” “You can beat this!” No one tells us, “You really ought to prepare for the worst!” or “Think negative.”
But I’ve found I’d rather brace for the worst and expect bad news. Because then if something unexpected happens, it’s a happy wonderful surprise.
It’s horrible to get bad news. But it’s even more devastating when you’re not expecting it.
“Think positive” was the mantra of the 1980s. Back then, I had a friend who had lymphoma. He was 33 when he died. His girlfriend said at the time, “You know how you’re always supposed to ‘think positive?’ Well, it can backfire. Because when things aren’t going well, you blame yourself. For not thinking positive enough.”
That made a big impression on me, long before I got cancer.
And I did get to meet my first grandchild. The happiest surprise.🥰
That makes since. I want to be realistic. I know that of all the uterine cancers I get to have the rarest, aggressive, chemotherapy resistant type. So the odds of long term survival isn't good. But in saying that although it's stage 3 I also think it was removed before it spread outside my reproductive organs and that is a very good thing. the treatment I'm getting now is to try to hunt down and kill rogue cancer cells before they are able to find a new home to destroy. I asked to be placed to a trail and my Dr is making arrangements for that, but I'm meeting with another oncologist Wednesday to see if there are any other option open to me. Both doctors are part of different research institutes. I just want to be able to say to myself should this cancer kills me that left no stone unturned. That I explored all my options and I change my life style to make my body an uninhabitable place for cancer to grow.
Well that's how I'm feeling today. Today is a good mental attitude day.
This is so honest and hopeful - hopeful in a not Pollyanna way - but truth and living life to the fullest ... I have, after almost 20 years, metastatic breast cancer. I am living. Doing the treatments. Exercising. I don't know where it will lead - but I value my family and friends. I enjoy all the little things. I continue to reach out to others. I appreciate your writing thus.