If you are not Stage IV but have questions, you may post here
Comments
-
Hi, I had stage 1 IDC over 10 years ago.
On Thursday I am about to have tests to discover details of a mass in my heart.
If that is cancerous, would that be Metastazied from my breast? Or I guess they test it. Would it read as IDC or just a different kind of cancer?
I am getting a bit freaked out. I've been waiting 3 weeks....thanks for any thoughts, I think my theory is cracked...
0 -
hello ladies,
I have had two issues come up in the past two weeks. I asked y’all a couple of thyroid questions and you were very helpful. My next test for that is tomorrow.
My other issue has been knee and hip joint pain both on the left side and only the left side. It is affecting my movement and slowing me down quite a bit. I talked with my Onc and he said cancer usually would affect both sides especially the hips. He seems to be leaning more towards arthritis, but of course I am concerned about bone mets and am confused about why it would usually be both sides. Is it possible to be only on the one side in two different places? Has anyone experienced anything like this? I have an appt on Thursday with a bone and joint doctor but just wanted to hear everyone else’s thoughts before I go in. I am thinking about asking for a MRI just to rule some things out
Thanks for listening!
0 -
Lories, the pathology will tell if if BC metastases or a new cancer or a benign tumor. Hangin there
0 -
Nano I have no advice. Hopefully someone here can advise you. Good luck.
0 -
Nanomom11,
Did your oncologist suggest a bone scan? I would ask about that. A regular joint and bone specialist may not be able to tell you much about cancer. It's just outside of their lane for the most part.
A nuclear bone scan can at least pinpoint some of what's going on. It may/may not be able to distinguish between arthritis and cancer spread, but at least it's a start.
0 -
See what they say thurs. Xrays will show if it's arthritis. If it isn't, a nuclear bone scan is an excellent idea. It shows if there is metabolic activity or not. No metabolic activity, no cancer.
0 -
Hello everyone,
I would like to know if someone here gives me idea what bone Mets on the hips. Do the pain stay constant, worse, or come and go. Can you do strenuous exercise with the pain. I have feelings on bilateral hips but the X-ray show nothing and X-ray on lumbar shows pinch nerve and Dr treat it as back problems. I don't know if bone scan or MRI.
Thanks,
0 -
Hi Houston,
I had mets in my left hip. I did not have any pain.
0 -
Hopeful -- I have private ins thru the state Marketplace and my IV chemo was covered same as dr & hospital. Oral chemo is covered as prescription drug. In my case that means that they fall under the same deductible and OOP max. I turn 65 in a few months and will have to switch to Medicare. Drugs are treated separately from hospital and Dr and there is no OOP max for prescriptions. My oral chemo is so expensive that I'll be paying alot more annually when I have to switch. Each plan is so different, you should check cost of a couple drugs you think you might take just to compare.
0 -
Houston - supposedly I have a met on my left hip - no pain, no idea it was there. Mets are usually to one particular point and the pain doesn't come and go or switch sides, if the pain shows at all. By the time met pain shows up its usually because its a fracture or the bone is in bad state to the point you wouldn't be able to exercise strenuously,
However, lower back problems, such as a pinched nerve, which could be from a narrowed spinal canal (stenosis), degeneration, arthritis, or slipped/herniated disk would cause pain in the lower back, and/or referred pain to the hips. Hip pain isn't necessarily from the hips, more often than not it can be generated from areas like the L5/S1, the SI joint, the glutes, or the piriformis muscle. Depending on what exercise you are doing strenuously, you could have some sort of mechanical issue that is impacting how you carry your body, leading to alternating hip pain. A physical therapist would be able to help pinpoint any oddities and help correct them.
A lumbar MRI would show the structure of what is potentially causing the back/hip pain, and you would want to speak to a neurosurgeon about that.
0 -
hi. Metastasis is cancer spread to another organ hence mammogram has nothing to do with detecting it.
Don't be so sure you will detect lung metastasis as I felt shortness of breath and cough only very late in it, when my whole chest was riddled with them.
I would say liver and brain MRI and chest xray as the least harmful scans that would show well brain and liver. I am not sure what is good for mets in bones detection apart from bone scan which I think is related to quite a bit of radiation ..
0 -
If you are asking about recurrence to breast tissue or a new primary - I think there is a more specific thread for that below the Stage IV threads.
For question about telling if you have mets - I'd probably been walking around for up to a year with them without knowing before starting treatment. It is what it is, other than pain (mine was back pain, but in the same spot where Ive had recurring problems for 30+ years), cough, or severe headaches you wouldn't know. The outcome is the same whether they catch it early or late. Finally, cancer isn't some sentient thing that understands statistics or genetics. Other than one instance of melanoma in my family there is no cancer of any type going back many generations. Look how that turned out for me. Just because your aunt may have died at year 7 doesn't mean you will. Instead you may be the one who gets to live a long and happy life -you've got a good start already!
0 -
Was hoping someone from the [Jane McLelland protocol / COC protocol for STAGE IV members ONLY] could answer a question....
I am researching this approach and in reading through your posts most of you have some very detailed stats about your tumor/mass. My report is so incredibly basic in my mind, literally just shows what is in my profile. Where or how did you get pathology so detailed? I was thinking about sending off to MD Anderson or somewhere for a second opinion.
On a side note - you are all amazing with the amount of research and knowledge you bring to the table with this approach! Thanks in advance for sharing!0 -
Hi rlmessy,
Scan\biopsy reports have most of the details. You can ask your MO for your records. They normally also provide a foundation 1 test or something similar with MBC diagnosis. Some information the foundation report has includes which mutations you have and provides recommendations on what cancer drugs will work.
I'm not sure what testing they do now for early stagers. It was 17+ years ago for my initial dx and things have changed so much.
0 -
Dear RLMessy,
I would post this question, then, on the Jane McLelland thread -- come on over. Folks there are very welcoming and share a lot of good into. Are you stage 4? Doesn't look like it from your published stats. Perhaps that's why you are posting here? That's the one thing that sends people over the edge on that thread.
I was originally diagnosed in 2003 and I actually saved my original pathology report (paper) along with all of my doc's notes. If you only know what you've posted, then perhaps it's because at that time, there were no patient portals, etc. With your 2019 diagnosis, though, you should have additional pathology. Contact the hospital where you had that surgery done and/or your doc from that experience, and they should have an additional pathology report.
What you may have also noticed on the Jane McLeland thread is that a ton of us have had Foundation One reports done. To my knowledge, you can't send an old path specimen to F1; it has to be a fresh sample. But you can ask your doc about doing a sample based upon a blood test and see what he/see says. The F1 reports are incredibly detailed and will reveal any mutations in your tumor that can help with selection of ongoing treatments.
Also, a second opinion is never a bad thing. You will need some additional info which will be determined by whichever hospital you choose. I would research and see if you can find out who specializes in your type of cancer (esp the papillary aspect). Make sure that you are getting a second opinion from an NCI/NCCN center (you can access lists like this online). It may require a trip to wherever you want to get the second opinion from, and then perhaps whoever you see there may work with your current oncologist.
Hope this helps.
0 -
BevJen & Simone...thank you. I am not Stage 4 so that is why I posted here. Trying to be respectful and not highjack a thread.
There just does not seem to be alot of info on the approach that is as detailed and researched in the other threads about alternative treatment options. Plus a bit of stigma about choosing alternative treatments is out there.
I am interested because I lost a treatment option when I had a bad reaction to Taxol. And, I had planned to do complementary alternative treatments anyway.
Just having to rethink treatment plan and timeline due to the Taxol being pulled.
0 -
Hi.
Has anyone experienced isolated elevated GGT levels? Mine were super high at 105 and then a repeat one month later was raised to 115. All other liver tests (AST, ALT, etc.) were well within normal range. I don't drink alcohol and have a BMI of 19. Any ideas?! Thanks, I appreciate this community.
0 -
Hi everyone,
I’m not sure where to post but I’m so worried hopefully anyone out there can help me. A little over a week ago I suddenly felt sensation discomfort in my good right breast, it feels like when you have period and the breast swelling out to the right side. I do self breast exam and it feels soft no sign of new lumps. What can be happening? thank you
0 -
Hello Friends, I'd like to run a concern by you. About 2 weeks ago I started to have pain in my right hip. I do not experience pain when walking but when i rotate my leg/hip outward. I also experience the pain when laying on the couch and lift my leg up straight. Waiting for onc to call me back on how to proceed. Thought I'd check in with this group for thoughts.
0 -
Houston, it has all the hallmarks of hormonal uos and doens , not cancer ..
0 -
jenjen - has the pain gotten progressively worse in the last two weeks? Alternatively, what type of pain - sharp or burning? Any tingling beyond the hip such as down the leg suggesting lower back origin/sciatica? Do you need pain killers to manage it at all or is it just if you happen to be in those positions?
0 -
great questions, SondraF. The pain has increased and more tender today when talking. Haven't had to take pain meds and no tingling.
0 -
had a bone scan today and hope to have results tomorrow.
0 -
The bone scan is clear. Waiting for the report to see if it provides thoughts on the pain.
0 -
bursitis?
0 -
Big Peaches,
My mother lived for 19 years and had bone mets for 12 years. She literally had no pain. The doctors couldn't explain why when there were places all over.
She was very active and only had intravenous chemo the very first time she was diagnosed. After that it was all chomo hormone blockers.
Just thought I would mention it to you!
JCP
0 -
Christy B,
What a testimony you are to God and a true miracle for all of us to hear about!
God bless you!
JCP
0 -
Anotherone ,
Hello. You were diagnosed close to me. I was 2005. Currently, I was sent to a pulmonologist because on a chest xray
an area of calcification showed up in/around the lung where everything comes together in the hilar region. They are scheduling a CT scan
of chest. I am soooo scared. How did you find about the lungs?
Take care, and thank you!
JCP
0 -
jenjenl
That is fantastic news about the bone scan! I just hope the pain gets better for you!
JCP
0 -
Hello MNSusan,
I hope things are going better. How nice you have three grandchildren!
I recently had a chest xray and it showed an area of calcification and the allergist/asthma specialist sent me to a pulmonologist for a consult. I had that
the other day, and she wants a CT scan of chest. I am very very scared. How did you find out it affected lungs? I was originally dx 2005 September w/ Stage1 IDC Grade 2 and o postive nodes
E+ and P+ and the other one negative.
Thank you. I live in Jacksonville, FL!
JCP
0
