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Topic: scanxiety, cant stop thinking im going to die

Forum: Stage I Breast Cancer — Meet other members with a Stage I breast cancer diagnosis to share information and support.

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Posted on: Dec 26, 2021 06:54AM

Posted on: Dec 26, 2021 06:54AM

minarchist wrote:

hi, i have no one to talk to and im freaking out and i need just anyone to please help me think everything is going to be OK

i have been in treatment for stage one since the end of 2019, lumpectomy, sentinal node removal, radiation, tamoxifen--you know the drill

my mammos have been clean, i dont feel bad, i take my tamoxifen religiously, Dr.s have been happy with my progress every time

last time i had blood drawn my CA 27.29 was elevated to 43 and i have to wait til the 30th for a full chest abdomen and pelvis CT scan. i cant stop worrying that i have ovarian cancer and im going to die. like this is it. i dotn know what anyoen alive could say to me to help me. i take care of my 102 yr old deaf blind grandmother, if i have to put her in respite care for soem kind of surgery it will cost me 10k a month, just to die anyway.

anyway, i have literally no way of comprehending what the chances are theyre going to find something worse, i cant stop thinking that elevated number DEFINITELY means "this is it", even though my dr didnt seem too alarmed by it and said she just wanted to check, just the fact that she ordered such a big scan makes me think she DOES think its something

i feel like im going to burst into tears and scream "OMG IM GOING TO DIE" every second

if anyone can help me i would really appreciate it, because i dont think i can take this


Dx 10/24/2019, IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 12/2/2019 Lumpectomy; Lumpectomy (Right); Lymph node removal Radiation Therapy 1/26/2020 Whole breast: Breast, Lymph nodes Hormonal Therapy 3/6/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx DCIS, Right, 4cm, Stage 0, Grade 2, 0/1 nodes, ER+
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Dec 26, 2021 07:06AM mountainmia wrote:

Hi. I'm really sorry you're going through this, and especially since you also have responsibility for your grandmother. One thing I know is many doctors (maybe most?) don't check tumor markers especially for early stage patients, because they are KNOWN to be unreliable. My health team is at an NCI-designated cancer center and they do NOT use tumor markers for early stage. Because they are not reliable. Your doc has ordered more tests BECAUSE the tumor markers are NOT reliable.

Right now you have a lot on your plate. Your anxiety sounds overwhelming. Please consider talking to your doctor about some help for the anxiety. Regardless of the outcome of your tests, that might help you a lot.

The rain comes and the rain goes, but the mountain remains. I am the mountain.
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Dec 26, 2021 07:15AM minarchist wrote:

thank you for your reply, im wondering if its a good thing to have a DR who checks the markers? maybe i shouldnt? half of my brain is like "its GOOD! its PROACTIVE! theyll find every molecule of cancer before it catches hold and keep me alive!" and the other half thinks "justifying why she has a hemotology lab"

Dx 10/24/2019, IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 12/2/2019 Lumpectomy; Lumpectomy (Right); Lymph node removal Radiation Therapy 1/26/2020 Whole breast: Breast, Lymph nodes Hormonal Therapy 3/6/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx DCIS, Right, 4cm, Stage 0, Grade 2, 0/1 nodes, ER+
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Dec 26, 2021 07:45AM mountainmia wrote:

I don't know what the motivation is. I'm just trying to calm your sense of imminent doom. :)

The rain comes and the rain goes, but the mountain remains. I am the mountain.
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Dec 26, 2021 07:49AM minarchist wrote:

lol thank you xD

Dx 10/24/2019, IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 12/2/2019 Lumpectomy; Lumpectomy (Right); Lymph node removal Radiation Therapy 1/26/2020 Whole breast: Breast, Lymph nodes Hormonal Therapy 3/6/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx DCIS, Right, 4cm, Stage 0, Grade 2, 0/1 nodes, ER+
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Dec 26, 2021 08:43AM salamandra wrote:

If you die anyway who cares about the $10k?

That was meant to be dark funny.

Seriously scanxiety is real and shit is scary and this year is a tough one for so many people for so many reasons.

There's not much you can do with the theoretical cancer right now but is there anything you can do for your mental and emotional health? Do you already have a therapist and psychiatrist? If not, can you set them up? Preferably people who are experienced with cancer patients?

Some meds and even just the feeling of being proactive about *something* can really help take the edge off. In a worst-case scenario you'll be glad you already have the extra supports set up and even if the tests come back clear (very probable), we still have years ahead of us of scanning and waiting and scanning and waiting. Figuring out how to be happy in the meantime... that's a worthy project.

(I say this as I'm in a very blue funk right this second and definitely not doing everything I could to take care of myself on a deeper more long term level. But hey we are all works in progress).

Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 10/17/2018 Lumpectomy; Lymph node removal Hormonal Therapy 11/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 12/3/2018 Whole breast: Breast Hormonal Therapy 12/18/2019 Fareston (toremifene)
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Dec 26, 2021 08:44AM beesie.is.out-of-office wrote:

This website is filled with people who have had elevated CA 27.29 results and who turned out to be just fine.

Is it a good thing to have a doctor that checks the markers? No, because as MountainMia said, the markers are unreliable. Checking these markers is specifically not recommended by ASCO and the NCCN. I've had breast cancer twice. I've seen 4 MOs over the years. None has ever mentioned doing marker tests.

Your MO has her own Hematology lab? Yeah, it's not a very charitable thought, but that could be why she is doing these unnecessary tests and scaring you with unreliable results.



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Dec 26, 2021 08:47AM minarchist wrote:

--I say this as I'm in a very blue funk right this second and definitely not doing everything I could to take care of myself on a deeper more long term level. But hey we are all works in progress

ugh, its so hard, im sorry youre going through that. no i dotn have therapists and psychiatrists, iwas FINE, i was barely even phased by my actual cancer diagnosis to the point my breast surgeon remarked on it. but this scan fear has finally broken me. ive never taken ANY medication of any kind in my life til tamoxifen, i dont know how i feel about takin gmeds for anxiety, but i will think about it. i guess its just part of our "cancer journey" bleh


mostly just jawboning my anxiety with peopel who get it helps knock it back, i probably need a support group

Dx 10/24/2019, IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 12/2/2019 Lumpectomy; Lumpectomy (Right); Lymph node removal Radiation Therapy 1/26/2020 Whole breast: Breast, Lymph nodes Hormonal Therapy 3/6/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx DCIS, Right, 4cm, Stage 0, Grade 2, 0/1 nodes, ER+
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Dec 26, 2021 08:51AM laughinggull wrote:

Hi dear,

Sorry you are going through this. You have a lot in your plate with your grandma situation.

As others said, those cancer markers are notoriously unreliable, I am also followed at a major cancer center and they don’t check them. It’s not proactive, because there is no reliable action doctors can take, after observing small up and down fluctuations of those numbers, that is going to protect you from the cancer returning and/or killing you.

So your cancer was early stage and your prognosis is good, although there are of course no guarantees. Even if you were to be diagnosed next week with a recurrence or met (which doesn’t sound like the most likely outcome), your life wouldn’t just end that day. At all. You know that. You would go to your doctor and come up with a plan, and follow that plan one step at a time.

So it sounds like your mind is playing tricks on you, and anxiety and worry are taking over and destroying your peace of mind. I totally understand it, because I have been there (not taking care of grandma, but I have young kids); I would take action to rein your worst minds in. Things I would consider: anxiety medication in the short term, a visit to a psychiatrist or therapist for advice on controlling anxiety long term: support group, meditation group, calming hobbies…whatever works for you long term.

You are likely to live a long life, with cancer suspicions and scares interspersed in it, on top of many other sources of stress and worry, and you need to be in charge, and prevent anxiety and worry from destroying your well being. You can do this!

Much love to you sister

LaughingGull

Heart

ACx4, THPx4, HP (to complete 1y); Nerlynx (1y); AI (expected 10y), Surgery: BMX + ALND, Reconstruction, Oophorectomy. Radiation. Dx 10/26/2017, IDC, Right, 3cm, Stage IIB, Grade 3, 2/6 nodes, ER+/PR+, HER2-
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Dec 26, 2021 08:52AM minarchist wrote:

thank you thats very helpful Beesie. on one hand she seems to be trying NOT to scare me by being pretty breezy about it, but its existence is just so frightening i guess theres no way to order a full CT scan like that without it being scary lol

Dx 10/24/2019, IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 12/2/2019 Lumpectomy; Lumpectomy (Right); Lymph node removal Radiation Therapy 1/26/2020 Whole breast: Breast, Lymph nodes Hormonal Therapy 3/6/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx DCIS, Right, 4cm, Stage 0, Grade 2, 0/1 nodes, ER+
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Dec 26, 2021 08:56AM minarchist wrote:

thank you LaughingGull this was very helpful. mostly ive become obsessed with the idea that it signals ovarian cancer, not recurrence or mets. i feel psychologically prepared for recurrence, but ovarian cancer just looks like a death sentence. my gramma and mom both had early hysterectomies and i dont have BRCA despite being ashkenazi (so thats a good thing), so i really dont know any family history

i think if she was just checking my breasts again id be a LOT less scared, the idea of "different form of much worse cancer" possibly being found is just wrecking me lol

Dx 10/24/2019, IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 12/2/2019 Lumpectomy; Lumpectomy (Right); Lymph node removal Radiation Therapy 1/26/2020 Whole breast: Breast, Lymph nodes Hormonal Therapy 3/6/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx DCIS, Right, 4cm, Stage 0, Grade 2, 0/1 nodes, ER+

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