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test results know but waiting to see doctor

I had a PET yesterday because of back pain i had been having. Bone scan only indicated an area of concern in my sacrum. PET says multiple mets. Area with most uptake was sacrum, and L3,4,5

Also femurs, both humerus, sternum and possible node/cyst on liver.

The mind is a powerful thing I guess. I felt relatively normal yesterday with very little pain. Today I hurt. Don't know if it the result of laying on the hard table for a hour with my arms up, or my mind is allowing me to have a pity party today. I am most concerned about what is next and how to go forward. I know that there are long time survivors with bone mets, but if the liver is involved, (and the test said it was inconclusive) the bone mets are moot.

I don' t know what she is going to suggest as a next step. Feeling a little anxious today.

Comments

  • aprilgirl1
    aprilgirl1 Member Posts: 743

    Bettysgirl, I am sorry you find yourself here and as you know, waiting for the Doctor appt to review scans is just awful! Your doctor may try to biopsy the mets to confirm hormone and her2 status. The cyst in the liver could very well be benign - see what your oncologist has to say about the scan results.

    You are right that there are long term survivors with bone mets and liver mets, and treatment that can keep the disease stable or even reduced to no evidence of disease. If you have pain, I have read that some women with bone mets will have local radiation. Most hormone positive. her2 - patients are started on a cdk 4/6 med and a hormone blocking med. I am on Ibrance and Fulvestrant. I have been on this treatment for 19 months and to be honest, feel good. It has been working well and I am thankful. Know you are not alone. In the Stage IV only area you will find a lot of support from others with bone mets etc. and once your oncologist starts you on medication you will find support for that specific treatment, which I have found really helpful to understand any possible side effects etc.

    I hope you meet with your oncologist early next week! Let us know how that appt goes and what treatment plan you are starting.

  • bcincolorado
    bcincolorado Member Posts: 4,684

    Will keep you in my prayers.

  • bettysgirl
    bettysgirl Member Posts: 645

    Thanks for your responses. Sadly, she was going to be out of town and I don't see her until the 21st. Very long wait indeed. I have thus far not shared the info with anyone but my husband and kids. I don't see telling someone then can't answer anything about what's next. I have a bucket list of medical problems that will complicate treatment. I have a leaky mitral valve that they have been monitoring.

    My daughter asked about taking to the grand girls but I asked her to wait until I know more. Just keep the prayers up. I am understandably a little bit down.

    Just marked 24 years since my mom died on July 6, surgery anniversary ect .. Big plans for annual family reunion at the lake mid August. Hopefully I will be able to go.

  • LivinLife
    LivinLife Member Posts: 301

    Just want to send support and gentle hugs bettysgirl.... I can't imagine.....

  • ShetlandPony
    ShetlandPony Member Posts: 3,063

    I think you will be able to go! (You have had your covid vax, right?)

  • shannyskittles
    shannyskittles Member Posts: 1

    Bettysgirl, sending you hugs and positive thoughts. Xxx

  • seeq
    seeq Member Posts: 1,060

    What ShetlandPony said. It really is a whirlwind of emotion in the beginning. You will start to feel better and more confident when you know your treatment plan. Hang in there!

    P.S. I hope the liver thing turns out to be benign. Either way, do NOT confer with Dr. Google about liver mets. There's a lot of outdated information that scared the *** out of me, unnecessarily - treatment has come along way in the last 5-ish years.

  • Txgatata
    Txgatata Member Posts: 43

    I just got my PET results back and I look like a human made out of cookies and cream. I hadn't had a PET since July 2020 because insurance considered me “stable” for 3 years. I find having radiation twice in 3 years a funny definition of stable. That PET a year ago had a couple of areas that were stable but nothing like what I saw today. Report not good either but I too have to wait til the 21st as my doc is out of town to get next steps. When the nurse called to go over results she couldn't tell me definitely if it was just bones and nodes because the were so many. There was some stuff about liver but very vague. And it's true you start to feel worse when you see and read that. But keep your head up because it's all we can do (actually there are many things we can do but keeping your attitude positive really does help.) Will share my 21st DocDay talk. Remember, you aren't alone.

  • bettysgirl
    bettysgirl Member Posts: 645

    Thanks txgatata. The wait feels like so far away. I have tried to refrain from consulting google. I just do not know which place they will choose to do biopsy to determine hormone/her status. My tests was not conclusive on the liver either but like I said for me liver involvement makes the bone moot. I try not to let my mind go there but my mom had liver Mets from her renal so I know that ballgame. My husband's dad had none mets from prostate so I've seen both sides. My insurance isn't good and last time we had a cancer policy. Too much going on in my mind. We just paid everything off and it pisses me off to only be able to be debt free for 1 month before shtf!. Take care.

  • bettysgirl
    bettysgirl Member Posts: 645

    I am beyond being upset. After I told them I didn't want to say anything until after my appointment I've been put on prayer lists, he apparently told them at church. After I had not said anything at work I had a church member come in Friday all teary eyed telling me how sorry she was. Him and both of my children have already talked to their supervisors about FMLA. I may just bust their bubble Wed. They want FMLA? I'll make sure they need it soon

  • 2019whatayear
    2019whatayear Member Posts: 463

    Bettysgirl. My gosh that is completely unaccetable. I'm sorry this happened. It's your story to tell no one else's. Gah

  • bettysgirl
    bettysgirl Member Posts: 645

    The appointment went sort of like I expected it to. She would never commit to say that the spot in the sacrum was mets, just that it was "highly suspicious". I told her I knew she would want to determine hormone status if it was. She said that when faced with both a suspect place in bone or organ you always did the organ first. However, she said at 1.5 cm we would have to see if the interventional radiologist could get a clear path to the biopsy. If not, then she would biopsy sacrum. She even mentioned the possibility of direct treatment to the liver if they would not get a biopsy. SO they are working on the precertification with the insurance and hopefully will be able to schedule the biopsy next week or the week after. The girl that schedules it said she did not expect to be able to call me before Friday with a date. So at least we have a baby step forward. It's a plan anyway. She asked me about pain in my lower back. I told her right now it was minimal and more in the am when i get up. The pain continues to be midline in the back and I told her i did not know if it was coming from the sternum or the liver but that it mimicked the kind of pain I had when I had a gallbladder. All she said was we will see.

    She would be a good poker player cause she isn't going to play a hand until she is good and ready!

  • bettysgirl
    bettysgirl Member Posts: 645

    How did your appointment go Txgatata?


  • MushroomTurtle
    MushroomTurtle Member Posts: 2

    I am so sorry you are living through this and your family are not respecting your wishes that is disappointing. I just got my stage IV diagnosis with liver metastasis. It took me 6 months and 3 tests and them saying that the things on my liver were benign. . My pain in my back and hips turned out to be arthritis!

    I felt very sad and upset because coworkers and doctors were all thinking I was faking it.

    It a hard pill to swallow when being right means you have stage 14 Cancer.

    Keep your head focused on small things take information one small bite at a time. Don’t worry about them. Worry about yourself. You are the most important person.

    Hugs,

    E

  • bettysgirl
    bettysgirl Member Posts: 645

    Thanks so much. So sorry to hear of your dx. My thoughts have been playing ping pong in my head. My emotions are all over the place. I had a dear friend call me just sincerely concerned and I told her the liver biopsy was what we were waiting on. It's just hard that you don't have answers and have to wait. Hoping that they call with a date this week. Take care! (((Hugs)))

  • bettysgirl
    bettysgirl Member Posts: 645

    So I got the call from the onco's office this AM. The biopsy is scheduled for next Tuesday at 9 AM. She was not able to tell me why but the Interventional Radiologist has decided to biopsy the bone. She siad that maybe they would tell me why when they called to talk to me about it.

    She also said pathology is taking about 2 weeks to get back. (glad they don't get in a hurry) So they scheduled the follow up with her in late August. I had forgotten how much waiting is involved with this stuff. Hopefully the path results will post to the MyChart and I will not have to wait that long. She did say that if they came back sooner, they would call me to follow up with her sooner. Hopefully with feedback I am getting from others and the "need for a driver" it means drugs are involved!

  • bettysgirl
    bettysgirl Member Posts: 645

    Well after the nurse told me pathology wouldn't post to the chart online it did. It's mets, er/pr+ HER2- like my original tumors. I have to research the other ones I don't know about the CK7 and GATA3 from what little research I did quickly I think that the positive CK7 would be an indicator that the spot on the liver is Mets as well. I moved my follow up to next Thursday. This time I am sitting on this info until we go so that I can wrap my head around it before it gets out in the prayer list. Any insight would be appreciated

  • moth
    moth Member Posts: 3,293

    Hi bettysgirl, sorry that you got the confirmation that it is mets. That sucks.

    I don't think the CK7 tells you anything about the liver spots. CK7 is just a protein that is associated with breast (& other) cancers. It helps the pathologist differentiate between a met and a new primary or a met from a different primary like colorectal etc. GATA3 is another marker used by pathologists and researchers but doesn't have any clinical applications - ie it won't change your recommended treatment plan.

    It is a lot to wrap your mind around..It's a tough time for sure in the early days.

  • bettysgirl
    bettysgirl Member Posts: 645

    Thank you for your response. I am trying to not project anything until next week when I talk to her. It does truly suck to know for sure it's mets. I am so worried about cost as our insurance isn't very good. I'm already 5k in the hole to the hospital.. We had just paid off everything but his truck. We managed to be debt free for 1 whole freaking month! I can't get to the woe is me stage yet. I'm stuck on pissed off

  • elderberry
    elderberry Member Posts: 1,037

    bettysgirl: I am so very sorry about the news. I wish I could offer insights but all I can say is "hang in there". Sucks doesn't really cover it. Your world has imploded. Pissed off is justified. We are all here for you.

  • bettysgirl
    bettysgirl Member Posts: 645

    Thanks you! This has always been a great place for support and advice. I'm sure there will be time of questions after Thursday.

  • carmstr835
    carmstr835 Member Posts: 147

    Hi sisters, it has been a while since I have been here, but I remember the information I was able to read about was very comforting to me. I find myself here again.

    My Oncologist ordered a CT scan of my chest in December, it showed 3 nodules that were not there in June. He was concerned and didn't want to wait the 6 months. He ordered the CT scan for last week(2 months later). My oncologist was not available after my scan. I read my own scan, it now showed 5 nodules/bilateral lobes, and now significant growth. Some almost double. The radiologist stated very concerning for metastatic disease in the report. I have not been sick, not even a cold and the scan in June showed nothing at all. I was very upset my appointment was canceled, but it was rescheduled for this past Friday. I emailed him and asked if he could order a pet scan and biopsy so we would have a plan when I talked with him Friday. He did order a PET can and a pulmonary consult. Well, his new appointment got canceled again, this time his family emergency. Not much you can do about that, but it sure does leave me hanging.... I had the pulmonary consult and PET scan. The pet scan was negative, they said too small, I was hoping that meant it wasn't cancer, but that was my wishful thinking.The pulmonary Doc said he could not do a bronchial biopsy, he tried to get an IR doctor to do a needle biopsy, but the IR Doctor said he did not believe it would be possible and could do more damage than good, he sent me to a Thoracic surgeon.

    I had an hour discussion with the thoracic surgeon on Friday afternoon and he brought up all 3 ct scans on the monitor and explained all the growth. I asked what are the chances this isn't cancer? He said none. It looks like cancer, it is rapidly growing in both lobes. It is cancer. I asked what about primary lung cancer, but he shot that down too, because of the sudden appearance of 5 nodules, it is metastatic. He will do a wedge resection on the 3 in the right lobe, I think he is also going to remove the 2 in the left as well, but not sure if it will be the same surgery. This will happen March 8 at 1:30PM. One night in the hospital. He said I will need systemic treatment, as well.

    I have no idea what kind of chemo, or radiation, he said they can do radiation again even though I had radiation to my breast. I want to keep my hair. Is metastatic chemo something you can use the cold capping for? Is it IV, or oral? Do you lose your hair with oral chemo if that is the way to go?

    So there is no question whether it is cancer or not, the only concerning info needed is the type of cancer(Her2 /Hormone receptors);. I am stage 4, metastatic breast cancer spread to my lungs, almost 5 years to the date from my first diagnosis. I had to read it for myself and still have not communicated with my oncologist of 5 years. I sure hope I see him before my surgery on the 8th, but they told me he was already fully booked for that week.

    I have lots of questions. I am on Human Growth Hormone (HGH) because of the benign lesion on my pituitary gland my pituitary gland is not producing it. My Oncologist is aware of this and told me, that HGH can't make cancer grow if you don't have it. If it is there, it would have shown up eventually anyways, and that quality of life means something, and I wholeheartedly agreed. If they remove the nodules in the left lobe, will they also do surgery on the right? Or might they do chemo first to see if it works on my new cancer? Do they also check lymph nodes for metastatic lung cancer? These lung nodules are very small, and no symptoms at all. 3 of them about 1 cm and one is about 8 mm and the 5th one is really small. My surgeon thinks he will remove them all.

    So I wait. Any help or info anyone can give me would be very much appreciated. Especially what chemo they do now? Do they do lymph node dissection for lung metastasis? Anyone had a lung wedge biopsy on both lobes in the same surgery? They are planning robotic surgery, the Davinci robot. Also, anyone else on human growth hormones?


  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534

    carmstr835 - I recognize your username from fasting threads. I'm sorry to see your news. I don't have lung mets, but there's a lung mets thread where I'm sure you can get most of your questions answered. Wishing you well on your surgery.

    https://community.breastcancer.org/forum/8/topics/780588

  • carmstr835
    carmstr835 Member Posts: 147

    Thanks Serinitystat. I will repost this and hope for some replies.