How do you really ever fully process a cancer diagnosis?

Posted by Denise @denisestlouie, Sep 15, 2024

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.

@mommacandy @valentinaz @carol1024 You are all so awesome! ❤️😀👏. Thank you for coming out to support @jeanknoll986 and sharing your experiences. I'm elated to know that whether you are currently in treatment @carol1024 or your treatment is hopefully in your "rear view mirror" you all remain hopeful and optimistic. I'm here to say that hearing those first words of "cancer" never completely disappear and neither do the surgeries or treatment regimes we went through disappear from our minds. I tell myself the best choice for me is to live my life every day and fill it with those individuals I love and activities that keep me strong.

😴🎶🏋🐈🦉

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@mommacandy

@jeanknoll986 that is the same combo of drugs i took in my chemo...I was offered comfort care right off the bat locally and i was like nope give me a referral to UVA, we're gonna fight this...i was diagnosed with metastatic ovarian cancer stage 3c and because it was on the outside of my liver here they weren't giving me much hope...i however was of an opinion of hell no this ain't gonna get me, i got too many things on my bucket list yet lol.. btw i was diagnosed i think it was near end end of January 2024.. this time last year i was trying to get my blood levels high enough for round 2 of chemo...i had 3 rounds before surgery and 3 rounds after..
i myself did a lot of latchhook wall hangings during the infusions some days...it depended on the day... some days i wanted to nap during them but a lot of that depended on if i was in a room with a bed or i was in a pod where there was several chairs etc...the first one was ironically the hardest on me because i really didn't know what to expect afterwards AND i hadn't discovered my acupuncturist could help with the nausea etc i experienced, once i did oh my...it was a world of difference, can't say enough good about how much he helped the nausea and so forth....and start on stool softeners ASAP if you start having ANY signs of constipation.. especially if you're on pain meds as well... (i was)
they'll tell you some foods taste "off" but its like holding a mouthful of coins even when you're NOT eating...or at least it was for me...i found out that shellfish (oysters, clams, scallops etc) was one of the foods that would make the metal taste go away for awhile...jolly ranchers sour candy also helped because i could suck on those, as well as lemonheads, warheads etc.. from what i understand that is different for everyone but that was my personal experience..
i went ahead and got my hair cut short before chemo began.. i had really long hair and felt like i could deal with losing short hair than i could losing those long locks of hair.. once i started losing my hair really badly (like maybe after the 2nd chemo but i had really thick hair) i started playing around with a huge variety of wigs...thankfully i had friends who had given me wigs when they knew i was starting chemo...
anyways, this group was fantastic at keeping my mood up as i went through it all last year and in Oct when i had my scan i was officially NED (no evidence of disease) and was the same with my scan in Jan and expect it to be the same in May when i go back for my next appointment. The other thing i've been doing since that NED is a variety of supplements that i took after my thyroid cancer in 2013...
If you ever need to reach out or i can answer questions, PLEASE don't hesitate to let me know...

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Thank you for this. I appreciate the suggestions from someone who has been through something so similar.

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I'm only on my 2nd of 6 chemo treatments, coming up April 3rd.

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@valentinaz

So happy to hear that you have great support ❤️ as well as this forum.

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I already love this forum. I'm so grateful to all of you who post here.

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@jeanknoll986

Oh my...I have found the group I need. I was diagnosed in late January 2025. Completely out of the blue and symptoms that I thought we're just late stage menopause things. The women in my family are all in their late 50's before "done" with periods, so... I had biopsy, surgery (full hysterctomy), and initially stage 1. However, post pathology showed stage 3 and I am now beginning a cycle of 6 chemo treatments...21 days in between each. I know that means treatment will not be fun. Any advice? I am 59, no children, 2 hours from my treatment center, and still in a little shock. 🙂

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I too have a very similar story. My initial diagnosis was Figo Grade 1 Had a total hysterectomy with a pelvic wash and lymph node dissection The pathology report came back and I have cancer on my pelvic wall No lymph node involvement and other signs were good . I start chemotherapy in two or three weeks and have a total of 6 treatments initially every six weeks. I am concerned anxious scared but ready to start the journey Any advice encouragement I can get. Also any information questions etc would all be much appreciated

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@mablejoy

I too have a very similar story. My initial diagnosis was Figo Grade 1 Had a total hysterectomy with a pelvic wash and lymph node dissection The pathology report came back and I have cancer on my pelvic wall No lymph node involvement and other signs were good . I start chemotherapy in two or three weeks and have a total of 6 treatments initially every six weeks. I am concerned anxious scared but ready to start the journey Any advice encouragement I can get. Also any information questions etc would all be much appreciated

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Grade 1 is the best scenario with such a diagnosis. I wish you strength and peace as you go forward with your treatment. Trust your Healthcare team!

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@jeanknoll986

Oh my...I have found the group I need. I was diagnosed in late January 2025. Completely out of the blue and symptoms that I thought we're just late stage menopause things. The women in my family are all in their late 50's before "done" with periods, so... I had biopsy, surgery (full hysterctomy), and initially stage 1. However, post pathology showed stage 3 and I am now beginning a cycle of 6 chemo treatments...21 days in between each. I know that means treatment will not be fun. Any advice? I am 59, no children, 2 hours from my treatment center, and still in a little shock. 🙂

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Hi Jean,
Glad you found the group. I was diagnosed with Stage 3 HGSOC in January of 2024. (i am 54 now). Same, thought I was having bloating due to fibroids that were known to me. But, alas, it was not the fibroids. I had 3 rounds chemo, surgery in April, then 3 more rounds of chemo, completed in July. This condition is chronic, something I am learning to live with. I have remained positive, and I am living well with cancer. I have had a reoccurrence already, so I am back on treatment. This one is Elehere, which is a bit easier for me than front line treatment.
In terms of getting ready for chemo, I would also advise the mittens/booties for ice packs for your hands and feet. To help prevent Neuropathy. and, I would say prepare for constipation. Seems to get most of us. I stay hydrated, east lots of fruits and veges, but still rely on Senna as part of my daily routine.
I would say, live your life as best you can. None of us know when its our time.
In terms of other support groups, Mayo has a GYN support group via zoom, you can find the link to register on this page.
I also appreciate the OCRA groups, there is one for newly diagnosed, and it is just another way to connect with other women in similar situation. you can find the link on this website under Support, you will have to register and use zoom. I attend this one weekly, and appreciate the support.
Take good care.
Kristin
https://ocrahope.org/research/

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@kristinfloyd1

Hi Jean,
Glad you found the group. I was diagnosed with Stage 3 HGSOC in January of 2024. (i am 54 now). Same, thought I was having bloating due to fibroids that were known to me. But, alas, it was not the fibroids. I had 3 rounds chemo, surgery in April, then 3 more rounds of chemo, completed in July. This condition is chronic, something I am learning to live with. I have remained positive, and I am living well with cancer. I have had a reoccurrence already, so I am back on treatment. This one is Elehere, which is a bit easier for me than front line treatment.
In terms of getting ready for chemo, I would also advise the mittens/booties for ice packs for your hands and feet. To help prevent Neuropathy. and, I would say prepare for constipation. Seems to get most of us. I stay hydrated, east lots of fruits and veges, but still rely on Senna as part of my daily routine.
I would say, live your life as best you can. None of us know when its our time.
In terms of other support groups, Mayo has a GYN support group via zoom, you can find the link to register on this page.
I also appreciate the OCRA groups, there is one for newly diagnosed, and it is just another way to connect with other women in similar situation. you can find the link on this website under Support, you will have to register and use zoom. I attend this one weekly, and appreciate the support.
Take good care.
Kristin
https://ocrahope.org/research/

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Thank you so much Kristin! All of this helps immensely.

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@carol1024

The only thing you have control over is your optimism. I am about to receive the 2nd of 6 chemo treatments. At least, I hope it's 6. I'll get 3 then repeat PET scan and if there's enough shrinkage of Lymph nodes, I'll have a hysterectomy then 3 more rounds of chemo. I was diagnosed with stage 3c carcinosarcoma late February. I had all the expected emotions. I just went for my toxicity test and my oncologist told me all labs were back to pre-chemo levels. She said everything has already returned to normal, after 1 week of chemo. I could be fooling myself but, I am very optimistic that I'll beat this. Stress is the worst thing for cancer so I won't get depressed and have a battle with those demons on a daily basis. Some days I don't even think about the cancer. It's there. You can't "worry" it away but you can flat sure worry it into something worse, I believe. So you be optimistic and, although I know it's not the same for everyone, try your best not to dwell on it on a daily basis. Have your emotional day, few days, or week. I had mine for a week after learning results of PET scan while waiting for appt for 1st chemotherapy treatment. The very worst thing for me....I have an inheritance check I'm due to get within the next month and I don't even know if I'll be around to enjoy it. I had my daughter added to my account at the bank, did power of attorney and made out my will. Believe it or not, it is a lot less stressful now knowing I have all those things taken care of. Please stay positive. I want to believe this is just a hiccup in my life and I WILL get through it. I mean, I had legionella in 1989 and they didn't think I'd make it. I had a brain aneurysm in 2011 and they SURLY didn't think I'd survive that. I never felt like I was going to die with either one. I feel that way with this cancer. This CAN'T be how I go out. I refuse to believe it. I don't feel it. Call me over optimistic but I need those positive vibes. 😊

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You are an incredibly strong and resilient woman. Thank you for inspiring me!

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@carol1024

That is exactly the regime I'm on. I'm due to get 2nd treatment on April 3rd. This time I'll be using the gel packs my sister ordered, and they recommended, on my hands and feet to minimize the neuropathy associated with chemo treatments. My treatments are 5 hours also. 😊

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Hi Carol. Did you experience heart burn and burping after a cycle? Just wondering if there is anything I can take that doesn't interfere with chemo drugs and could help. I'm being careful with what I eat, but last night was horrible. My oncologist isn't available until Monday to call about.

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