Nine years later recurrance in lung

I had stage 1a grade 1 endometrial cancer 9 years ago. I had a full radical hysterectomy, and the Dr.s felt there was virtually no chance it would return. No chemo or radiation was suggested or offered. Nine years later I started to cough blood and after loads of tests, it has been determined that I have an endometrail tumor in my lung. It is not operable due to the position it is in, so they are looking at radiation, if my lungs can take it ( I have moderate emphysema), and chemo. I have been told it is not curable but treatable, and the impression I have at this point from every Dr. that is involved is that I likely have years to live, but will always be a cancer patient.

Is there anyone here who has been through this, or is livin with a similar diagnosis? I am scared, sad, and angry all at the same time. This was not supposed to come back.

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Comments

  • gaylecool
    gaylecool Member Posts: 11
    edited September 2024 #3

    Thank you so very much. I will get through it, Iam just trying really hard to focus on the positive info I am hearing at this point. Not much else I can do except follow what they tell me is next. No one seems to think this is the end for me, so that's a good thing, and I try to hang on to that. Sending you hugs and support for your surprises as well, cancer just plain sucks.

  • gaylecool
    gaylecool Member Posts: 11

    Thank you so much for checking in. I will go read your profile, I really appreciate it.

  • gaylecool
    gaylecool Member Posts: 11
    edited September 2024 #6

    Your story is so inspirational for me, Thank you. I have printed it out and am keeping it in my notebook, to re-read when I am frightened, or down. Thank you so much for sharing it.

  • jan9wils
    jan9wils Member Posts: 210 Member

    Hi gaylecool,

    I've had a lung wedge resection followed by chemotherapy for an endometrial tumor. I didn't have a cough, it was a spot that was on my initial CT scan back in 2014 that we were watching. You can read my bio to see what living with recurrent cancer for the past 10 years has been like for me. I would very much encourage testing of the tumor to see if more targeted therapies would apply to your situatiion. Pretty much recurrent endometrial cancer is not curable but definitely treatable and there are several of us who keep "plugging away" year after year and you can't even tell we are cancer warriors!

    I wish you the best and please keep us updated as we all benefit from learning from each other.

    Jan

  • gaylecool
    gaylecool Member Posts: 11
    edited September 2024 #8

    Thank you Jan, I will read your bio! The tumor has been tested in every manner. The have also done genetic sequencing on it.

  • Kim25
    Kim25 Member Posts: 29

    So so sorry to hear.

    You have the right idea to focus on the positive.

  • Fridays Child
    Fridays Child Member Posts: 283

    Hi, Gaylecool -

    Count me in as one who is living with chronic cancer. My surgery was over 12 years ago and I was also told little chance of recurrence. Mine was found from an MRI due to hip pain, but I also had mets in both lungs with no symptoms. So I had chemo and radiation and finished that six years ago. I'm still here, doing reasonably well.

    I concur with those recommending genetic testing. There are a lot of treatments now that weren't available even six years ago.

    Wishing you the best with your treatments.

  • gaylecool
    gaylecool Member Posts: 11

    Thank you so much for sharing. It's very encouraging. I really hope I can have radiation, it all depends on my lungs as I have COPD. I know they have lots of ways to attack this though if I can't. I am still in a state of shock, but just trying to put one foot in front of the other.

  • Mercorby
    Mercorby Member Posts: 143

    Hi there,

    9 years ago (2015), I dx with ec, stage 1B, grade 3. They noticed a lung nodule at that time, but it never lit up. Around 2018 or 2019 it started to double in size, but it never lit up until Sept 2023. That biopsy turned out to be ok, but by Dec, 2023 it was really lit up. It was biopsied and determined to be the same cancer I always have. But the drs believe it was cancer all along. It just popped up when I was off my cancer meds. So, they don't consider it a recurrence. I have had 4 recurrences, but only one was a real recurrence.

    My lung nodule was treated with sbrt, a very direct form of radiation. I recovered very quickly. I wish the same for you. For many of us, this is a chronic, but well-managed disease.

    Best wishes to you.

  • gaylecool
    gaylecool Member Posts: 11

    Very encouraging post, thank you so much for sharing your experience!

  • gaylecool
    gaylecool Member Posts: 11

    I just got back from my appointment with Dr. Volpp the Radiologist/Onchologist and I can have radiation!! Even better than that, he thinks he can get it all, which bodes really well for a long term survival, he even mentioned "possible cure". He was wonderful and I have real, honest to goodness HOPE, not only for an extended life, but a reasonably healed and long life.

    I still have COPD, which I would not have known about if it hadn't been for all this, so maybe that's a blessing as it can be addressed properly.

    Dr. Volpp does want me to have a regular Oncologist for follow up, and has referred me to a really good one that he works with. Dr Bahador, my GYN/Onchologist will be a consultant for possible chemo if they feel I need it.

    This could not have been better news, and I haven't been able to stop smiling since!!

    Don't EVER give up hope ladies!!

  • oldbeauty
    oldbeauty CSN Member Posts: 385 Member

    Gaylecool,

    So SO happy for you!! Best wishes, oldbeauty

  • dssdesi
    dssdesi CSN Member Posts: 18

    yeah yeah! you can do this! hoping for a quick recovery!

  • MoeKay
    MoeKay CSN Member Posts: 502

    So happy to hear your wonderful news, Gaylecool!! Good luck with your upcoming radiation treatments! Please keep us posted on how things are going for you. MoeKay

  • gaylecool
    gaylecool Member Posts: 11

    Thank you so much. I have some real hope now!

  • gaylecool
    gaylecool Member Posts: 11

    Thank you, things are looking up. I sure hope they keep going in this direction!