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.
May 31, 2019 07:55PM
I have a question for you. In your experience, how do you keep tabs on cancer? When mom was asked to get a CT xray for her spinal column, the cancerous destruction (or apparent cancerous destruction of the T10) appeared. I am still hesitant because she did fell down two flights of stairs twice in 18 months, so I do not know if this is residual damage of that or not. In any case, it prompted that we looked for help and got the PET scan, which showed odd behavoir on many cells around her skeleton, lungs, medial line. and liver. The Oncologist that was treating her (surgical oncologist) said that it wasn't right, that the only ones that made noise to him were the damage on t10 and the liver.
I promise I have a point. Mom has always been anemic. there is no real reason for her anemia, but the hospital at one point allowed her to reach 4 in iron; let me tell you that a cadaver has 3 in iron that is how bad mom's anemia was. so I took her to a private doctor who recovered her. That is how we learned about the problem with her liver. She has been taking care of it for several years and, a funny thing happened in the PET scan. the PET found it with problems and big. and the matching CT (the one they do to cross examine the findings of the PET) found it normal and shrunken.
Anyway, we have started the radio therapy process for the t10, regardless of whatever it is that has happened I trust that radio therapy will help her heal. I am also providing her with proper calcium fixing and bone fracture mending nutrition. But the radio therapist said that in 4 months after the therapy, I should have her undergo a new PET scan. I found it odd (specially when he said that he could get me a better deal) because I believe that you should not submit yourself to radioactive materials so often.
So here is my point. what do you do? A CT radiography eveyr six months? every year? a bone gamma gram? She had neither a problem of severe pain., right now she is very tired all the time, but that could also be her anemia. . . or the most recent fall, she slipped on soapy water. her falls are distractions, rather than motor problems.
I am sorry if I am rambling too much. The focus thing here is what do you do to keep tabs on cancer on your loved one? radiographies? anyother radioactive means? Tumoral markers?
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Jun 3, 2019 05:35PM
Sorry it took so long for someone to respond to you MexicanMary, and I'm sorry to hear about your mom. I think you'll find that most of us Stage IV people do get scans on a regular basis to monitor for progression and response to treatments. There seems to be varying opinions on how often - some get a PET/CT scan quarterly to monitor, my oncologist doesn't like to do them that often so he only orders PET/CT scans to gauge response to a new treatment and when I have any concerning symptoms that might indicate progression. Depending on where in my body the concern is, I also get MRIs. I recently completed an extensive course of radiation and after enough time passed I had both an MRI and a PET/CT because they show two different things, and I had two PET/CTs in the months before radiation - one to confirm suspected progression and one to confirm that it wasn't responding to chemo, so in 8 months I had 3 PET/CT and one MRI. Some oncologists also monitor tumor markers, but if the markers start rising the oncologist will order a scan to see what's going on.
Your concern about the radioactive materials is valid, especially when someone is being scanned often. It is only a small amount of exposure and the benefit outweighs the risk. There is a very small chance that exposure to radioactive materials could cause a new cancer, but there is a much higher risk that her existing cancer could cause bigger problems if it isn't monitored and scanning is the only way to see what's going on (if tumor is growing or shrinking, if new mets have developed). The most important thing to remember is for her to drink plenty of water after the scan to flush the material out of her body.
IBC Stage IV de novo - mets throughout skeleton, liver, distant nodes, chest wall, skin, tumor in brachial nerves.Still trying to get it to slow down.
9/8/2017, IBC, Right, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ (IHC)
9/26/2017 Taxol (paclitaxel)
2/6/2018 Perjeta (pertuzumab)
2/6/2018 Herceptin (trastuzumab)
11/26/2018 Taxol (paclitaxel)
1/30/2019 Whole-breast: Breast, Lymph nodes, Chest wall
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Jun 4, 2019 07:05PM
Oh Lori, please do not worry. WE all, patients and caregivers are very busy running around beating this condition. Right now, for instance, we are waiting for the -apparently- ideal doctor to come back from congress to see if she can see us asap (or sooner, haha) Mom has started to experience a small amount of well-defined pain in her back. T11 seems to be acting up and now I am scrambling to find an orthopedic doctor to tell us IF buying her a corset would help her and prevent further damage to t11. Radiotherapy hasn't started as the hospital hasn't called us yet to give us the ok for her treatment.
Of course, I am not sitting on my thumbs and I have now two more areas where i can direct myself to IF needed be. However, financial resources aren't limitless and I need to consider if a corset would benefit her then we can turn to the chemo as it seems that, at the very least, two months will be out of our own pocket. The hospital where mom is cared for has an open appointment for her but until August 27th! that is waaaay toooo far away! So I want her to start chemo now that the mets in the liver are very small (she already saw her hepathologist) and before they start to cause mayhem. Her Nash is undercontrol so much so that the doctor said that if he hadn't treated her first for Nash he would think that her liver is 1000% healthy! woohoo US
now, is the other condition we need to shrink.
And what you tell me gives me a lot of hope and a good measure to start walking. There aren`t that many PET/CT areas in Mexico. and for us, one such studies costs a bit over 30 grand. that's not a huuuuuge sum, but it is a big one.