If you are not Stage IV but have questions, you may post here
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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!!
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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.
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... 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?
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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.
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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
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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.
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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.
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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!
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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.
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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.
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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?
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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
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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?
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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.
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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?
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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..
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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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Miles - I am sorry you are going through this and not getting diagnosis that fits. Cancer comes with a lot of stress, and stress does strange things and is a health problem all by itself. I did think about throwing in the towel when the 3rd BC was diagnosed in 2019, and at times have thought that the treatment/drugs is worse. I feel their effects, but the cancer is silent except for the imagery, lumps, and biopsy. Until Covid hit i was going to a support group which had just started. I found it helpful, and hope that it resumes. I find this site helpful as well. If what you are feeling is from stress, yoga, meditation might help. I find continuing to do what I like doing, hiking, walking my dog, exercising, helps a lot.
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I forgot to mention chocolate, it helps too
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Thank you all for taking the time to write. I really appreciate all of your words and wisdom.
This is no easy path. I have always loved the poem. For those of you who do not know it:
Stopping by Woods on Snowy Evening; Robert Frost
Whose woods these are I think I know.
His house is in the village though;
He will not see me stopping here
To watch his woods fill up with snow.
My little horse must think it queer
To stop without a farmhouse near
Between the woods and frozen lake
The darkest evening of the year.
He gives his harness bells a shake
To ask if there is some mistake.
The only other sound's the sweep
Of easy wind and downy flake.
The woods are lovely, dark and deep,
But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep.
I've thought a lot about changing my tag line because through this journey I have learned that there are promises I can't keep and I may "sleep" before I can go miles...
If no one has told you: You are important. You have made a positive contribution to life and to the Earth. You matter.
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Thank you, Miles. When I memorized that poem, living in Maine, I could easily picture that snowy scene in "snowy woods". I loved it!
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I can read that poem as my plea to go many more miles and fulfill more promises. My appeal and affirmation of life. But I suppose most people leave things unfinished, whenever they leave... There is a children’s book with that poem and lovely drawings by Susan Jeffers that show none other than Santa Claus in that snowy wood. He has promises to keep.
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hy i hope that u all are doing well my mother is diagnosed with metastatic disease in bones lungs and liver after matestocmy 7 years ago now she is taking armidex endoxan and xeloda plz advice me if anyone know any best treatment
her ER PR is weakly positive
HER 2 neu :(2 equivocal) according to the old biopsy results that was done 7 years ago
and plz also advice should we again go through liver biopsy
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Yes, Sara, the liver biopsy is the right step to determine the best treatment. ER, PR and/or Her 2 could have changed. If they can get enough tissue, they could also get genomic testing of the tumor (Foundation One, Caris, etc.); something to ask about. I have had two liver biopsies, and though it was a strange experience, I did not suffer pain or fear during the biopsy. They have good drugs to help you through it.
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Hi everyone
I haven't been around for awhile. I have had right hip and around the back up to liver pain. All right side. Finally went to GP. Got x ray and ultra sound as well to check for bursitis.
Just spoke to nurse and she said I have osteo arthritis and not bursitis. So this is from xray and u/sound.
Hmmmmm. I wonder....anyone here know about if bone mets and osteo look similar on xray? Anyone else wondered if they might have bone mets or can I dismiss this out of hand?
Luckily I see my breast doc on Monday so should I push for mri? Because my liver area hurts too...
I know we all get anxious around check up time. Don't see my GP til next wednesday either to get more detail.
I'll be happy to 'just' have osteo at this point.
Any similar experience advice or knowledge entirely welcome!
Thanks sister friends.
Astrid.🌾
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what a lovely post!
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Hi Miles
I wanted to say I loved your post, but when I pushed 'reply' button, it doesn't relate to any post. I guess I'd have to copy and paste.
Anyway
I hope ypu are feeling a a whole lot better and get to the bottom of brain issues.
Astrid.🌾
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Astrid, I think anyone with upper abdominal and/or right flank pain, and a history of breast cancer, should get an ultrasound of the area, possibly followed by an MRI, PET or CT scan. There are other possible causes besides bc mets. Whatever the cause, you need to know so you can find out how to stop having pain there. Your oncologist needs to order some imaging for you.
I'm sorry, maybe someone else will be able to answer your bone questions.
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thanks Shetland
I appreciate that. Just a tad anxious.
🙏🙂🌾
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I know its anxiety producing, but I would push for the MRI. I thought my back pain was osteoarthritis due to history, but it wasn't. An MRI would be more specific, and especially if you are having liver -area pain as well. If its mets you want to get that under control as soon as possible.
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