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Topic: How do you guys cope with dubious results??

Forum: Caring for Someone with Stage IV or Mets —

A place where family members, caregivers, and loved ones of people having a Stage IV (metastatic) diagnosis can share, discuss, and support one another through the tough times unique to this diagnosis.

Posted on: May 27, 2019 05:30PM

MexicanMary wrote:

My mother was diagnosed with breast cancer in 2008. She underwent a radical surgery and the oncologist took out her breast and 43 lymph nodes ("to ensure cancer would not come back"). Since then to now she has been diagnosed with Anemia, Cirrhosis NASH (that's not from drinking), and osteoarthritis... she's fallen down the stairs twice. and last December something "odd" was spotted on her column. I assumed it was something to do with her falling down as she did not want us to take her for an x-ray....

A CT was taken and a diagnosis was made: Metastases. It was not the first time we have had a wrong positive, so we took it an extra step and get her a PET scan, for those who do not know, a PET scan is a Positron Emission Tomography, which means that by a radioactive media they tint cells that have "odd" and "cancer matching" behavior. then, to confirm what they find, they do a CT scan

The PET gave us a confirmation: metastases. and added: "she is ridden of metastases and even has a metastases in the liver and lung". However, the CT scan does not confirm the "ridden of metastases" and just confirms the metastases on the liver, but NOT on the column. I am not a doctor, but I do know that 1+1=2. So WTF? the studies were done in the same hospital, at the same time.- . .

The oncologist that operated on her the first time told us to go back to the medical service and to get mom radiotherapy for the column and chemo for the liver. He said that he did not believe that the lung spot was actually cancer. My sister is devastated, she IS an ENT, so she understands a lot more and it seems that the oncologist told her that mom would need IV chemo, as it would be stronger and faster... (!)

I've read that there are many times when scarring tissue in the liver and lungs can be read as cancer in the PET. and I understand that -maybe- they are tackling something that may or may not be just to be on the safe side. and in that area, the only real omg! is the spinal one. He said that in this case, as it is something quite small, recovery would be total. and radiotherapy posed no real problem. . . But now I think he was feeding us a line....

I want to ask you guys, has anyone gone through ",maybe yes, maybe no"? I am clinging to hope and falling down,,,, I read a post, the first post I read here is the post of someone whose mom has been living with lung metastases for 17 years now and that brought tears to my eyes and hope to my heart.... I want to know.... no, I need to know that there are more of you out there, that this is not: "SHE'S DEAD IN 4...3...2..1.."

I apologize for the rant..

BTW I am in Mexico

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May 27, 2019 08:38PM illimae wrote:

Scans are useful be they do sometimes conflict on what they see. I have a couple of spots on bones that are assumed to be mets but only a biopsy can confirm for sure. There are too many variables to estimate any kind of prognosis now but there are treatment options that keep us living well for years. It really depends on her response to treatment, hope should not be lost.

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Chemotherapy 1/1/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/1/2017 Herceptin (trastuzumab) Targeted Therapy 1/1/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ (IHC) Radiation Therapy 10/19/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/22/2019 External: Brain Surgery 1/21/2020 Radiation Therapy 2/16/2020 External: Brain Radiation Therapy 7/20/2020 External: Bone Radiation Therapy 12/4/2020 External: Brain Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy Tukysa (tucatinib) Chemotherapy Xeloda (capecitabine)
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May 27, 2019 09:54PM Moderators wrote:

Hi there, MexicanMary. We're glad you've joined us here, although we're so sorry to hear about your mom. We know what a scary time this is! We also know how terrifying it can be to hear the word "metastases". But it's important to remember that treatment for mets and stage 4 cancers have come a very long way. Many, many women go on to live long and full lives after their diagnoses, and you'll find lots of members here who can attest to that. It's not the hopeless diagnosis it used to be, and there are many treatment options available. As Illimae said, there are a lot of variables to consider, but one should never lose hope Hug

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May 28, 2019 06:10PM MexicanMary wrote:

Hi! thank you for replying! Mom has one of such spots in the left hip. I do not believe it's met but there is a doubt and since she's allergic to most anesthetics, a biopsy is out of the question. The same applied to the liver. I got her to get a tumoral marker test. . . I do not know if that is the name for the lab work in the USA but what they do is that they check how much tumor byproducts are present in blood.

She scored high on the ovarian cancer one (which is the one that reflects the liver and the ovaries) and so I was devastated, then I started doing research and found in the USA library of medicine that the fact that is high usually represents that there is another illness of the liver. Not CA. of course, I can not and should not discard CA as a possiblity, but it now is a remote chance and that brings back my spirit from the dead.

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May 28, 2019 06:14PM MexicanMary wrote:

Thank you for replying, Moderators! yes, being here gave me the nudge I needed to do deeper research. I mean, there IS mets in her T10 and my sister believes that also in the left hip, but that is two against the like 20 spots that the pet marked.

the only symptom mom has is tiredness. and yesterday I was just thinking that since my father was a SOB and mom neglected her health for most her adult life, maybe we should check her heart again. she got a cardiac check on 2013 but maybe we are missing something that can be as deadly as cancer but hasn't had that much propaganda. . . anyway, on thursday we are going to the doctor (the insurance doctor) and let's see what it is that they decide to do. they might just decide to leave her without medication

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