If you are not Stage IV but have questions, you may post here

GreenEyes,

The jury is still out on this one, but my tumor markers started rising in May 2018. I had a CT and a nuclear bone scan. The result? Extensive arthritis in my spine, my hands, my feet, just about everywhere. No mets per that test. Repeat tests in October 2018 -- same read on the scans. Repeat tests in May 2019 -- well, maybe that arthritis isn't really arthritis, but no definitive answer about whether some of it was mets. At this point, my MO says I likely have bone mets (I also have liver mets for sure) but "bones are hard."

UCFknights,

I think MOs only generally test tumor markers with their metastatic patients. It doesn't look from the profile that your mom is that. What I've read is that the tumor markers (CA27-29, CEA, or CA15) are not at all reliable with non-metastatic patients. However, your mom's medical oncologist also probably reviews other blood tests and they can show if something might be brewing? For example, rising alkaline phosphatase, according to my internist, is a good reflection of possible bone metastasis.(Interestingly, none of my oncologists have ever told me that, but I checked it out and it's apparently true.)

MNSusan, sorry you find yourself back on BCO after all these years, and I hope you get a pleasant surprise from the biopsy results. If I understand correctly, you only had a fine needle biopsy of the nodes (as opposed to a core biopsy of a breast mass). If that's the case, even if the pathology shows cancer cells, it's unlikely that they will be able to determine the ER/PR/HER2 status, since they are only looking at cells floating in liquid. I think breast MRI and PET are fairly standard in cases like yours, and serve different purposes - the MRI is the most sensitive test to look at the breast and see if there are any tumors, where and how big they are. It's also very sensitive for abnormal lymph nodes. If it does turn out to be a recurrence, the MRI will be useful to guide your team to a place to biopsy and/or surgical plan. The PET/CT will look at the rest of your body to make sure there are no distant metastases. It's not as spatially accurate as the MRI and thus not as helpful in determining a surgical plan.

The decision on when to tell the family is a personal one. I told my sister and my then 6-year old daughter the day after I got the biopsy results, and let them know it was stage IV as soon as I got the PET/CT scan results a couple of weeks later (my daughter probably didn't grasp the gravity of the situation, but it explained why I wasn't going to get surgery and chemo, and let her know that it's OK to talk about it). I know my sister would have been upset to be kept in the dark and she's a physician, and I would have had a very hard time pretending everything was OK for my daughter. I'm not sure that's the best way to do it, but that's what felt most comfortable to me at the time. Best of luck with your tests!

Hi ladies, I have developed constant dry mouth and scratchy, phlegmy throat since last November (thank goodness no coughing and swollen lymph nodes). All these symptoms are not getting worse or better. I went to ENT doctor last week to have gastroscopy the doctor said my throat looked swollen and looked like it is from allergy. Can this be one of the side effects from my hormonal treatment (2.5 years of Lupron and Aromasin)? I saw somewhere online that Aromasin can cause sore throat. Thank you for all your input!!

SandyBeach, I had a fine needle biopsy (FNA) for a lymph node that found cancer, and when I asked about the ER/PR/HER status they said that they couldn't determine it because there wasn't enough material in the aspirate. They did a core biopsy of the breast tumor for that. You bring up a good point though - maybe it is technically possible to get enough material in a fine needle biopsy to do a full determination, and it just wasn't the case for me.

stephilosphy00, I don't recall anyone specifically complaining of a swollen throat from AI's, but general dryness does seem to be a fairly common side effect. If the doctor thinks it's allergies, you could try an OTC antihistamine like Claritin, Allegra or Zyrtec for a few weeks and see if it helps. Also, use of a humidifier at night might alleviate the worst of the symptoms if they are indeed caused by dryness.

Hopeful82014, right now oral taxols (oral docetaxel from Modra, oral paclitaxel from Athenex) are still in clinical trials, so the issue of cost has not yet come up, since the clinical trial sponsor provides the drug at no cost to the patient. Once they get FDA approval the companies will probably run reimbursement scenarios and price the drugs as high as they can while still ensuring that most insurers would cover them. I have no idea how much that would be, but my wild guess would be somewhere in the vicinity of Abraxane prices, unless the efficacy results really are much better than infused taxanes.

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...

Lories, the pathology will tell if if BC metastases or a new cancer or a benign tumor. Hangin there

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.

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,

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.

I’m at the 5 year mark. My aunt died at year 7 and I’m hitting panic again. Since I done have mammoa to gram how do they monitor for recurrence other than a pain that lasts for two weeks? My cancer breast tumor location and shoulder socket have felt pain since surgery. For those with double mastectomy how was the recurrence found? As +++ I worry about brain and liver and chest wall. I think I could figure out lung Mets. Thanks

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!

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.

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.