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.
Comments
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I don't have experience with this particular issue, but I don't blame you one bit for being scared, sad, and angry. I am on year 3 of having everything removed—-Stage 1C (the old designation, which I'm using bc I had 83% myometrial invasion which is, hello, a very big number), and Grade 1.
Now, I'm likely dealing with another issue too, which is why I came in this morning. So, it sounds like you are being diagnosed with a problem that will end up being a chronic issue? how frustrating. If I weren't in here, I would likely let loose with some choice language on your behalf.None of us—NONE of us—ever think we deserve or will end up with these types of diagnoses. It seems so blatantly unfair. These horrible issues are supposed to happen to—-looking around—other people. Well. As soon as I hit sixty, I started having some fairly serious health issues. It was surprising to me that my once well-behaved and fairly manageable body suddenly became so unpredictable.
Just as I was ready to celebrate, truly feel as though I could celebrate, having gotten through the virtual hell of menopause and putting my dear parents to rest, along with retiring from a taxing job, along comes Sally. Sally being endometrial adenocarcinoma. Truth be know, I had been complaining of severe pain and some other issues for a number of years but my oh-so-NOT-helpful doctor chocked it up to post-menopause stuff and let's-get-on-to-the-next-patient-fast.
Anyway. I am here and listening, and commiserating, and so sorry. This is hard news for you, and I wish I could sit down with you and make you peppermint tea. We could throw eggs at the side of a barn and scream nonsensical things, but I bet rather than that, someone in here who can comfort you with experience will roll along quite soon.
The best thing is to get you through this coughing blood issue, and get you to a place of relative ease and happiness again. Get a mani pedi and a massage, and get that appointment book out and schedule those stupid treatments. You can do this. You have, and you will again. I believe in you.
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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.
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Hi galecool! I am traveling on vacation now and I don't want to go off on a long-winded post. I am sorry you have to confront this. I also learned there are no guarantees in life or cancer. I simply will direct you to my profile with it's blow by blow description of my near 20-year odyssey. The good news is I am still here and living a good life. I have not had your experience of coughing blood; my recurrences have been shown to be slow-growing, and since I have been followed and scanned all along my recurrences we're detected pretty early. I've had chemo as well as "gamma knife" targeted radiation to lung modules. Chemo is not pleasant, of course, but doable; the radiation was a non-event for me (not as tiring as pelvic radiation). You just do your best to get through it once you've decided what is right for you.
I would urge you to get a second opinion before you decide, preferably at a national cancer center. And you ought to be offered genomic/genetic analysis of the lung biopsy that may indicate one or more of the newer targeted therapies could be useful. A lot has changed in 9 years.
Best wishes for your health as you move forward in your journey.
Oldbeauty
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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
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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.
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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.
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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.
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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!!
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