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.

Posted on: Dec 26, 2021 08:54AM

Posted on: Dec 26, 2021 08:54AM

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 12/3/2019 Lumpectomy; Lumpectomy (Right); Lymph node removal Radiation Therapy 1/27/2020 Whole breast: Breast, Lymph nodes Hormonal Therapy 3/7/2020 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 11:16AM beesie.is.out-of-office wrote:

Your doctor is being breezy and trying not to scare you because she knows that the markers are unreliable and likely don't mean anything.

But having that result, it inevitably leads to more testing. This is what in the medical industry is called VOMIT - Victim of Medical Imaging Technology. Seriously, it was an ultrasound tech who told me this, as I was having an ultrasound after an x-ray had spotted something completely incidental to the purpose of the x-ray. That ultrasound led to a CT scan, which led to a long list of incidental findings and another follow-up CT scan, with one more scheduled soon. All of this because of that one incidental finding on an x-ray, and in the end it appears that nothing that has shown up is serious and most if not all I probably would never have known about (or needed to know about) without the imaging.

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Dec 26, 2021 11:21AM minarchist wrote:

ugh that sounds rotten, yeh thats part of what im scared of lol

Dx 10/24/2019, IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 12/3/2019 Lumpectomy; Lumpectomy (Right); Lymph node removal Radiation Therapy 1/27/2020 Whole breast: Breast, Lymph nodes Hormonal Therapy 3/7/2020 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 01:58PM - edited Dec 26, 2021 02:07PM by pamep

I asked my surgeon about blood marker tests last week when I saw her for my followup. She also said that while they may be good tests for other cancers they are not yet reliable for breast cancer. Minarchist, I have gone through the same treatments as you. I am coming to the realization that it is better to continue with life as close to usual as possible and to undergo testing if and when symptoms appear, just like the standards Bessie circled. My MO, RO and surgeon follow this practice. It is easy for us to fall into worrying. Got to laugh, and cry, at VOMIT.

Take care.

Dx 7/26/2021, IDC, Right, 1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2-, IHC Surgery 8/6/2021 Lumpectomy; Lumpectomy (Right); Lymph node removal Hormonal Therapy 10/15/2021 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 10/27/2021 Whole breast: Breast
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Dec 26, 2021 02:50PM beesie.is.out-of-office wrote:

minarchist, yeah, it hasn't been fun. And while all that follow-up imaging with incidental findings was going on, I was on a parallel path with other imaging; here again, I had necessary imaging that produced incidental findings that required more follow-up imaging.

The difference in my case versus yours is that with both my situations the first imaging that led me down the VOMIT path was necessary. I have a history of breast cancer and I presented with clinical symptoms that could represent a metastatic recurrence; in one case it was persistently swollen neck lymph nodes and in the other case it was new and then worsening hip pain. As breast cancer patients, it is important that persistent symptoms be checked out - most often they are not mets, but that possibility exists and these types of symptoms need to be investigated. So while it's been no fun at all going through test after test and finding all these things that probably never needed to be found (at one point I had 8 findings that all had to be investigated further; I'm now down to 3 with monitoring on 2 others), at least I know that the initial tests that set off this process were necessary.

This is precisely why unnecessary imaging and lab tests are not recommended for breast cancer patients. The likelihood that these tests find something that never needed to be found (as we age, we all develop harmless weird stuff) is probably 100 times greater than the likelihood that these tests will discover mets that had not yet presented with symptoms.

Hopefully your imaging is clear and does not uncover anything serious or any incidental findings so that you can be done with this process quickly.


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Dec 26, 2021 03:01PM minarchist wrote:

thank you beesie, your experience is very valuable. part of me feels like not going to the CT scan, and the other part is petrified of making a deadly error out of fear. im wondering if i should get a second opinion or request a follow up blood test before doing imaging, is that something people do?

Dx 10/24/2019, IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 12/3/2019 Lumpectomy; Lumpectomy (Right); Lymph node removal Radiation Therapy 1/27/2020 Whole breast: Breast, Lymph nodes Hormonal Therapy 3/7/2020 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 03:03PM minarchist wrote:

PamEP thank you so much for sharing your experience, it does seem like your diagnosis and treatment are just like mine. can you just NOT get the ct scan when they want to order one? my fear is to make a deadly decision, something that my mother did and my father came close to doing

Dx 10/24/2019, IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 12/3/2019 Lumpectomy; Lumpectomy (Right); Lymph node removal Radiation Therapy 1/27/2020 Whole breast: Breast, Lymph nodes Hormonal Therapy 3/7/2020 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 03:10PM alicebastable wrote:

I had breast cancer and kidney cancer at the same time (plus endometrial a decade before). I've had CT scans two or three times a year for three years, and twice they led to PT scans. Still, my MO has never run tumor markers on me (and she has her own lab, to address Beesie's comment). I don't understand why any MO would run them on stage 1 patients unless there is a really, really good reason to do so.

Ignore treatment info (below) which is a BCO glitch. Do not enter personal information on this site since they grossly mishandled a data breach. Surgery 7/11/2018 Lumpectomy; Lumpectomy (Left); Lymph node removal Surgery 8/8/2018 Radiation Therapy 10/29/2018 Whole breast: Breast, Lymph nodes
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Dec 26, 2021 03:27PM minarchist wrote:

thank you for sharing this with me AliceBastable. i am coming to see this is not common and wondering what i should do. i dont think she has a "good reason", i think its just her course of treatment

Dx 10/24/2019, IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 12/3/2019 Lumpectomy; Lumpectomy (Right); Lymph node removal Radiation Therapy 1/27/2020 Whole breast: Breast, Lymph nodes Hormonal Therapy 3/7/2020 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 03:55PM parakeetsrule wrote:

Why not just get the CT scan? They're not a big deal and then you'll have some peace of mind. And if your anxiety is making you miserable, treat it as you would any other medical problem: with proven, helpful treatments including medication. It's completely normal! And you can stop using it when you don't need it anymore. Stress and anxiety aren't healthy and make you unnecessarily miserable.

Stage 2 at 37, Stage 4 at 41. Cancer is dumb. Cookies are good. Dx 3/21/2017, IDC, Left, Grade 2, ER+/PR-, HER2- Chemotherapy 5/15/2017 AC + T (Taxol) Hormonal Therapy 12/8/2021 Faslodex (fulvestrant) Targeted Therapy 12/13/2021 Piqray (alpelisib) Dx IDC, Other, Stage IV, ER+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal (Left); Mastectomy (Left) Radiation Therapy Whole breast: Lymph nodes, Chest wall
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Dec 26, 2021 04:01PM pamep wrote:

minarchist: You are your own best health advocate. You are in an understandable decision quandry that you are going to have to sort out. I was in one myself recently about a medical appointment I had made that later made me uncomfortable. So I canceled the appointment. The point is that we as breast cancer survivors, or patients, are in charge of our treatment. I try to find doctors I trust and I listen to them. Still, I have disagreed with them more than once. They, in turn, have listened to me. Have you voiced your concerns about these scans to your doctor? Second opinions are always an option.

Wishing you well.

Dx 7/26/2021, IDC, Right, 1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2-, IHC Surgery 8/6/2021 Lumpectomy; Lumpectomy (Right); Lymph node removal Hormonal Therapy 10/15/2021 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 10/27/2021 Whole breast: Breast

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