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  • moth
    moth Member Posts: 4,800
    edited July 2020

    I'm tnbc

    my primary symptom was cough that didn't go away; but it was winter and everyone had a lingering cough...after 8 weeks tho my gp sent me for a chest xray and the rest is history. I had a very large lung met.

    Tenderness below right ribs. I have an above the counter bowl sink and used to lean on it to get close to the mirror to apply make up as I'm really near sighted. I remember having to adjust so as not to press the edge of the sink under my right ribs due to discomfort. Those were my liver mets.

    Fatigue - wouldn't have seen it as a symptom on its own (I had good reason to be tired as I was in a very intensive degree program) but with the other things it made me concerned

    Unexplained weight loss - mine was minor. Didn't gain weight over Xmas, was just slowly losing


  • Bookworm14
    Bookworm14 Member Posts: 176
    edited July 2020

    Sadiesservant,

    I feel better with that information, so thank you! Any reason your doctor prefers CT over PET

  • Sadiesservant
    Sadiesservant Member Posts: 1,995
    edited July 2020

    Hi Bookworm,

    I can't say with any certainty why he likes CT. I think, in part, it's a function of access as PET scans were harder to get here until recently. I also feel that CT is a good tool when cancer may be a bit more indolent. Mine seems to be a slow moving beast that doesn't show up well in bone scans and, I suspect, might not show up on PET either. Despite this, he now uses a combination of bone scans and CT to track my disease, bringing out MRI if he is worried about something brewing that he wants a closer look of.

    Ultimately, while I agree that we need to be our own advocates I also feel strongly that we need to have some faith in our physicians. Treating this disease is as much art as science and oncologists get a feel for their preferred modality. They see things when others do not and also can avoid blowing some blip out of proportion. Most importantly, at least in Canada, there is no set formula for scanning or follow up unless there is cause for concern.

  • moth
    moth Member Posts: 4,800
    edited July 2020

    PET exposes you to significantly more radiation than CT so that may be another reason to avoid it unless absolutely necessary

  • helenlouise
    helenlouise Member Posts: 420
    edited July 2020

    I agree Moth, plus they are more expensive and require radioactive material that has a very short half life. Where I live in regional Australia they can only schedule so many per day as the material has to be transported and can’t be stored for any great length of time.

  • MikaMika
    MikaMika Member Posts: 342
    edited August 2020

    Hello,

    Could you please help me to understand, when there is a time to do a bone scan? I started Arimidex and Lupron on March. Starting May I have pain on my lower back. On my last appointment (a few days ago) I described its intensity "like 2, but often it strikes like 7". My MO is completely sure it's just a SE from my treatment. He ignores my question why the pain is located in the same spot. What would you do? Wait and watch for 2-3 months, or get a bone scan as soon as possible? I had one done last year, it was normal. I also had lobular cancer that is hard to detect on scans.

    And another question. If I am fine to accept risk of radiation exposure, maybe it's better to get CT/bone scan? I am relatively young (39) and carry BRCA2 mutation.

    Thank you.

    Updated: last year I had CT and bone scans done. I know that lobular is generally slow growing, but somehow last year the palpable part of my former tumor doubled its size over the course of four months.


  • BevJen
    BevJen Member Posts: 2,523
    edited August 2020

    MikaMika,

    I think the timing of scans is best discussed between you and your MO. Yes, lobular is sneaky, and that's a valid point (I also have lobular). However, it's also generally more slow growing, and perhaps that's why your MO is hesitant to scan. I have no experience with Lupron, but I do have experience with both Tamoxifen and Femara, and they can cause some significant SEs. I had both back pain and pretty severe ankle/foot pain on Femara, and they were both SEs.

    You mention both CT and bone scans. They are two different types of tests. If you've had one and not the other, perhaps you could raise that with your MO if the pain continues.

    I'd keep on top of it, and if you are that concerned, I'd contact your MO and ask for scanning.


  • MikaMika
    MikaMika Member Posts: 342
    edited August 2020

    Hello BevJen,

    Thank you so much for your response!


  • Debbiemarler
    Debbiemarler Member Posts: 10
    edited August 2020

    How will I know if the lesion in my head is malignant or benign if they cannot biopsy. My MO said it's a bad place to biopsy unless they drill a hole in my forehead above my eye. She said they won't biopsy due to risk it might be a hemangioma. I guess I am just not wanting to wait the 3 months to check it for growth. I am not very good at waiting. I am thinking if its mets I could be using my time more wisely like not working 40 hour weeks. I am selfish, impatient, frustrated, most of all, lonely because I suck at being a friend therefore I have none.

  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited August 2020

    Hi Debbie, I don't really have an answer, but I'm in a similar situation because my Drs found a concerning bone spot that is inaccessible to biopsy. The current plan is to wait three months and then repeat imaging. My spot was found on a PET/CT, do you mind if I ask how yours was found?

    I agree that it would be nice to know if I now have MBC from a practical perspective. Does anyone know if there are other ways to assess possible/probable mets when biopsy is not an option?

  • Bookworm14
    Bookworm14 Member Posts: 176
    edited August 2020

    anyone have a soft tissue mass show up in superior anterior mediastinum? CT scan mentioned maybe a lymph node and has not changed much from the PET scan last year...the mass was not even recorded on that scan by the radiologist.

  • moth
    moth Member Posts: 4,800
    edited August 2020

    bookworm,

    Was your tumour in the lower inner quadrant? I'd keep an eye on it if so but if it hasn't even changed in a year, it sounds like an anatomical variation more than a thing to worry about. But as always bug the doctors for answers if you're concerned

  • BlueGirlRedState
    BlueGirlRedState Member Posts: 1,031
    edited August 2020

    Talk to your Oncologist and primary about Bone scan. My oncologist ordered when AI Rx'd to get baseline sincec AI known to thin bones. I don't know how they differentiate between "regular" bone loss from aging and accelerated from AI. Statistics? Risks from radiation? Is it an appropriate tool for monitoring or should it be limited to 1/2yrs or longer?

  • Bookworm14
    Bookworm14 Member Posts: 176
    edited August 2020

    moth,

    The cancer was in the very inner lower quad on the left breast. One says thymus tissue and another says maybe lymph nodes. I cannot really get a good answer from them. I have a bone scan Tuesday so I guess we will wait on those results and then I will contact my Onco. Thanks for taking the time to respond!!

  • BlueGirlRedState
    BlueGirlRedState Member Posts: 1,031
    edited August 2020

    Confusing scans /interpretations of scans. I posted this on the Ibrance page as well since that is the drug I am taking. Oncologist today said that the CT last week showed overall improvement since the scan in April. Sounded good until she hedged when I asked about the size, saying that size wasn't as important as the overall picture, since the radiologist might not look at the exact same area. And she had to look harder at the results to find the size. So Sept 2019 2.5, Jan 2020 (can't find record), April 2020 7mm, Aug 2020 1.9 - sounds like it increased by 2.5X. Has anyone else ever been told that "size" isn't the main thing to look at? Is there "much" variation with the CT scanner and rediologist interpretation? Scans in April and August same facility, scans in Sept and Jan at two different facilities. I thought they were more precise. Scared about what might really be going on and the value of scans.

  • Miles
    Miles Member Posts: 62
    edited August 2020

    ... based on current symptoms... my oncologist things cancer has metastasized to Brain... My Dr. told me this on Tues of last week and I am scheduled to have an MRI on 8/28.

    Logically, I know that does not mean anything. Logically, I know that even if it is true; I can not change it. Logically, I want to wait to talk about "it" until I know that I do in fact have Brain Mets.

    Emotionally... I'm a bit of a wreck. I'm losing my self respect because I have already told 4 people what the doc said. There is a part of me that wants to be reassured that my loved ones care that I am afraid. I think that doing this is a selfish and self centered thing to do.

    IDK.... Am I crazy? Is there even more wrong with me for feeling this way?

  • NorCalS
    NorCalS Member Posts: 288
    edited August 2020

    Miles,

    I started having symptoms of brain mets when I started Xeloda in March of this year (daily headaches, nausea, lightheadedness). MO ordered a brain MRI because I am stage 3c TBNC with symptoms of brain Mets. The MRI showed no brain mets. MO thinks that I am having a rare SE to Xeloda. Hopefully, your MRI comes out clean. It’s really scary to face possible mets so I think it is reasonable to want your family to know and to support you. Be kind to yourself and give yourself a break from feeling guilty.

  • Bookworm14
    Bookworm14 Member Posts: 176
    edited August 2020

    Good afternoon! I figured I would ask you ladies a question regarding the report from the bone scan. It seems like I should be okay, but just wanted some feed back

    Update: the MO called and wants to do a PET. Does this mean the cancer is now in my sternum


    Finding:

    There is a small focus of moderately intense increased osteoblastic activity in the sternum at the level of the sternomanubrial junction. This correlates with sclerotic focus along the sternomanubrial junction on recent CT, which is likely of a degenerative etiology or related to developmental partial fusion. There is no Ossetia destruction or expansion to suggest metastatic disease on recent CT

    My recent CT showed a 12mmx12mm soft tissue mass on superanterior mediastinum that could be a lymph node.

    Thanks

  • BlueGirlRedState
    BlueGirlRedState Member Posts: 1,031
    edited August 2020

    Miles - hugs. I hope the MRI comes out clean. It is not selfish to tell friends/loved ones your fears and concerns, even if they cannot change the situation. I think holding it in builds stress which does not help anyone. I definitley keep things inside and do not tell people I should tell. Everything I read tells me how important community and support are.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2020

    Bookworm - not necessarily. Its the phrase about not seeing osseous destruction that is key. A sclerotic lesion could be, yes,caused by mets but it can also be caused by other things, which the report notes (e.g.. degeneration). The PET will give more information as to what it is, but that is a fairly positive looking report.

  • Bookworm14
    Bookworm14 Member Posts: 176
    edited August 2020

    SondraF,

    Thank you for taking the time to reply! Keeping my fingers crossed it all works out. I was pretty okay until the doctor called and said we need to do a scan!

  • Anotherone
    Anotherone Member Posts: 633
    edited August 2020

    Why do you think it was bad of you telling people ?

    If you did not you would been living a lie - talking about tomato pure or whatever other things with them while keeping this bombshell of investigations for possible cancer quiet.

  • Bookworm14
    Bookworm14 Member Posts: 176
    edited August 2020

    I want to thank you ladies for your feedback. The doctor ordered a PET scan and then wants me to come to his office to go over all the results at one time. I’m they said it is nothing bad, but wanted to examine the test with me to explain things. Hope y’all are all doing well.

  • Miles
    Miles Member Posts: 62
    edited August 2020

    thank you all for your feed back and reminding me for my mental health and for my relationship with friends and family I need to talk about what is happening to me.

    my brain looks "fine" but I have been using breastcancer.org since 2016 and I can't figure out to get to pm. I no longer know how to spell privet message.... I can't write letters and the left side of my brain hurts. can someone help me get to messages?

  • moth
    moth Member Posts: 4,800
    edited August 2020

    Miles, are you on a laptop or phone or ipad and browser or app?? It's different on every platform it seems but I can try to help you


  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited August 2020

    Miles, if your oncologist cleared you (Did you have your MRI?) you should probably see a neurologist. If these symptoms are very recent, maybe the emergency room to rule out stroke?

  • BlueGirlRedState
    BlueGirlRedState Member Posts: 1,031
    edited August 2020

    Miles - sending a Private Message PM might be different on differt devices and different browsers, but if I click on the person's name in a message, it takes me to where I have the option of sending that person a PM.

  • Miles
    Miles Member Posts: 62
    edited August 2020

    Thanks for responding and helping me. I am on a laptop. I did click on a name and was able to PM that name.

    I have been to the ER when I lost function of the left side of my body on Nov 14, 2019. Things have slowly escalated and then the last 3 weeks I've lost the memory of how to do things I've always been able to do. My radiation Oncologist sent me to the ER for a brain MRI Wednesday of last week and it came back normal. The ER dr. decided that the only thing wrong with me was that I had a headache. He gave me a rx for a barbituite mixed with Tylenol. SE rebound headache.... cost $40 for 10 pills. I did not fill rx.

    Anyway, I'm going for a mammogram, dexa scan, MRI of neck and chest, I've been referred to a neurologist. I'm going to see the chemo doc to review my blood tests. In the ER back in Nov; The doc said that I had something in my blood that shows up when there is ovarian, or endometrial cancer. The Nurse Practitioner at my chemo dr. said not to worry about it because I've had a total hysterectomy. My radiation oncologist said that I need to see the Dr. not the NP about my current symptoms. So here I am... trying to navigate through this... It may have nothing to do with cancer so I should probably not be writing here. I'm just tired. Is anyone else tired? Have any of you wanted to stop trying? What do you do to keep pushing through?

  • Anotherone
    Anotherone Member Posts: 633
    edited August 2020

    hi Miles

    No wonder you are tired with these symptoms going on. I guess we all have moments when we want to stop trying. Those pass and we then feel different and then we have them again - I think it is normal..

  • Sunshine99
    Sunshine99 Member Posts: 1,680
    edited August 2020

    Miles, I love your signature line. I memorized that poem many years ago when I lived in Maine for a couple of years.

    I'm sorry you're tired. It gets discouraging, I know.

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