If you are not Stage IV but have questions, you may post here
Comments
-
Results are back and it is bc mets. Don't have ER/PR/Her status yet so in a bit of limbo but talking to onc tomorrow. And after all of that talk of making lists, what do I forget? To ask for pathology report and of course it's after close. I guess I should postwhere elsewhere but is it possible to just have mets in the hilar nodes only? My hope would be then I could do the ibrance which many have said shrinks the nodes. Guess i am just wishful planning now
0 -
Diagnosed last year in January. Had lumpectomy, reexcision, and rads with hysterectomy and taking tamoxifen. I felt a swollen lymph node in the fatty part off the side of my breast in November and had ultrasound. I was told it looked normal but they couldn't guarantee that nothing was there. I have watched it since then, it has felt larger this last month and started having edema to that side of my chest and found a tiny hard nodule. MO felt it and said it felt like it was on chest wall and not breast tissue, therefore it was nothing to worry about and he will see me in 3 months. I have since felt two more tiny hard bumps in the same general area. Pcp said to see what TO thinks, so called and got appointment with him for Monday. I only had 3 lymph nodes out with sentinel node biopsy. Is it possible to have swollen lymph nodes not be Mets?
0 -
I'm not an expert but I was told that swollen lymph nodes can be many things and that they can go up and down in the course of doing their jobs. So it could be infection or inflammation that they are fighting that is causing the swelling.
0 -
Txgatata, what did the doctor say? I don't know much about hilar nodes. I do know that an axillary lymph node metastasis near the affected breast is not the same as metastatic disease (a.k.a. stage iv) that has spread to lungs, liver, bone, etc. I am hoping a hilar node metastasis is considered a loco-regional recurrence rather than stage iv.
0 -
Thank you for asking!Unfortunately, the hilar nodes wrap around the bronchi in the lungs so it along with the other nodes there like mediastinal are considered distant mets so Stage 4. Still don't have markers or pathology back so still in the dark. They are getting me in for a PET scan early next week and I see my onco on wed. And away we go on the rollercoaster once again!
And when I say in the dark, I mean on the ER,PR and Her. It is definitely BC in the nodes
0 -
I'm sorry to hear that it is considered mets, Txgatata. Thank you for the explanation. Please join us on the stage iv forum, and let us know if you'd like help finding your way around.
0 -
Hi. I am looking to find anyone who has had a bi-lateral mastectomy for Stage I cancer and then was diagnosed later to Stage 4. Is there anyone whose cancer went that route (from stage 1 to 4)?
Thanks-
0 -
Hi Emma,
I was originally diagnosed as Stage 1. I only had a single mastectomy, though. My original tumor was small enough for lumpectomy, but I opted for mastectomy. No nodes involved. My right breast was healthy and it was not recommended I have a bilateral mastectomy. I had a solitary brain met show up about 9 months after my mastectomy. Chemo was not indicated for me at the time of my stage 1 diagnosis, as my onctoype score was only 9. My only treatment to date has been hormonals (tamoxifen and now arimidex), gammaknife radiation to tumor bed, and surgery. I am currently NED from my head to my toes.
Do you have specific questions I can help you with?
0 -
can someone help me plz.
I am 43 diagnosed in 2010 stage 3 and had mastectomy of right breast. Had chemo and rad and tamoxifen.
Since may 2017 i developed a dry cough had chest x ray where plueral effussion showed in rt lung diagnosed as pnemonia had treatment
Was fine but now its is 3 wks cough is back and today i have hoarsness voice. And shortness of breath
The polmunary dr insists i have nothing and my lungs are clear and it is only psychological
Anyone had z experience
0 -
I had a dry cough for several months and docs chalked it up to GERD and my blood pressure meds. I finally got a CT and that along with biopsy showed mets in lung lymph nodes however all docs still think cough is not related unless the nodes are somehow pushing on something. Have you talked to your oncologist? Perhaps a second opinion if it worrys you as CT scans are likely to show more than X-ray.
0 -
Today I am a mess. I decided to go to my internist yesterday because of stomach pain likely caused by taking too much Advil. While there I mentioned a dry cough which doc said is likely allergies and she listened to my lungs and ordered a chest X-ray. She called last evening to say I have pneumonia. WTF?? I have no cough, no sputum, my lungs are clear, I have no fever, chills or elevated WBC's. I'm tired but I've been tired since I started the chemo last August. Of course it's now Friday nobody is returning my calls and I'm a basket case. Does this sound like unfolding of lung involvement?
0 -
Hi Susan, take a deep breath lovely and try not to over think things. It is possible to have pneumonia with out the common symptoms so please try not to go where you don't need to. Have a good weekend and call your doc on Monday so you can have a deeper discussion.
Love n hugs. Chrissy
0 -
Dear Chrissy,
❤️❤️❤️ Just what I needed to read on this Friday eve. Thanks. Susan
0 -
Hi ladies - I recently found a lump above my collar bone and went to my MO to have it checked out. She recommended a biopsy. My BS looked at the lump on an ultrasound and said he saw calcification. When I asked what it could be he said it was very likely metastatic breast cancer. He said it could also be metastatic thyroid cancer or lymphoma. I just finished chemo two weeks ago so I asked if it could be anything benign. He said it's possible that there was cancer in that spot the whole time and when the chemo killed it, the body's reaction is to wrap the dead cancer cells in scar tissue. That was the only benign scenario he gave me. I had a CT scan the same day as the biopsy and my RO could see it, so he went and looked at my CT scan from March, which was after my surgery but before my chemo. He said it was there at that time too. That leads me to believe that it's not dead cancer cells wrapped in scar tissue. The question is why didn't it light up on the MRI that I had done before chemo? If it showed up on the CT scan back then, why didn't they see it on the MRI? Someone told me that if I had a breast MRI done, then it wouldn't have scanned that area. It seems so odd that the lymph nodes by the collar bone wouldn't be included. Any insight is appreciated. I have to wait until Tuesday for the pathology results and it's driving me crazy. I've never been so scared.
0 -
Joycek - I'm in Hampton, so not too far from you. I'm hoping for a benign scenario as well but I'm not optimistic, especially since the BS looked at it on ultrasound and said he thought it was metastasized bc. I just finished chemo two weeks ago and I can't for the life of me figure out how it could have survived, or at the very least, didn't shrink. I start rads on August 14th and my RO said that area will be included so he doesn't foresee any reason to not move forward with it. I hope your MRI results confirm that it's benign!
0 -
I posted a few weeks ago about lower back pain that was much worse at night and that the pain wakes me up. My doctor ordered a PET/bone scan, and I'm in the waiting room now waiting for them to call me to do the test. I'm a basket case. The pain has gotten worse, with a dull ache that is there almost all day. Please talk me down me. Can this be mets?
0 -
Citrinetiff,
Are you on an antihormonal like anastrozole or letrozole ? They can cause really bad lower back and hip pain. I'm on anastrozole and the pain in my back is horrendous. It's so bad I may have to switch to another AI.
Hope that this turns out to be something minor, and easily fixed.
Trish
0 -
Trish, no I'm not on any of those meds, but hopefully it's nothing. I should have the results by Tuesday or Wednesday so I'm in for a stressful few days
0 -
So sorry to hear that, Citrinetiff. Waiting for results is the hardest. Sending big hugs.
Trish
0 -
Citrinetif: I hope it turns out to be nothing. I would like to share my lower back pain story.... About 4 years ago I would have really painful lower back pain. It only occurred at night, when I was in bed. It would wake me up and was so painful I could barely get out of bed. Once I got out of bed and walked around the pain would subside. I never saw a Dr cause I didn't have a PCP at the time. I had this problem for about 3 months then it just went away -- haven't had that pain since. "The bridge" (lower back exercise) helped a lot.
Hopefully your pain turns out to be nothing too.
0 -
I have had 2 mammograms and ultrasound of enlarged lymph node under my arm since completing rads. In November, they said it looked normal. Now it is slightly bigger and have tiny hard module below my collarbone. Both RO and MO said they are movable so nothing to worry about. Can't a lymph node have cancer in it and it be movable? I thought they only became immovable when the cancer spreads outside the nodes to the surrounding tissues? We're any of your nodes positive but movable?? Prayers to all for good test results!!
0 -
I had a bone scan and CT scan in Jan and they were clear. Over the last month the pain in my hips and lower back have gotten to the point i'm taking aleeve daily - not like me at all. Its at the same location on both hips/pelvis bones. I have another bone scan on Tuesday to make sure. I keep telling myself that a clear scan in January is good and that while it is possible for mets to appear in 6 months...hopefully not. Out of all the scans I've had, aside from the very 1st one, this one i am terribly scared/worried about. This pain isn't like anything else i've had, most constant, no pattern btwn sitting and walking. No injuries to explain. Hoping for a pinched nerve or arthritis or just weaker bones from hysterectomy in 2013. Ugh, i hate this feeling.
0 -
is non calcified same as groundglass for lung nodule. I had a CT last week and they found a 5mm non calcified nodule in my lung. I'm very worried now.
0 -
Esully007 - I have a nodule in my lung (6 mm). It's the only one and nothing else there. I was very worried too - when I found out about it. But, MO was never worried and I've had 2 CT's to follow-up to check for stability. It's always there and always the same (benign. My MO said it's actually pretty common to have one....hope that helps!!!
0 -
Most of us have lung nodule(s) esp as we get older. The air we breathe has a lot of pollutants in it. When my 6 mm showed up on CT scan my MO asked me if I ever lived in the valley (where it's pretty bad). No. But it was ruled benign after the 2nd CT scan after chemo. Thought was if it's still there after chemo then it's benign. If it was gone then they'd follow me closer. Total looking at it was a year. Protocol is 2 years. Didn't want to get more radiation in me for something that was so common.
0 -
thank you ladies for such quick replies. I was a bit worried about the non calcified part. Still helpful to know it's common.
0 -
Hi Esully - I *think* if I can remember - mine is grass-ground and non-calcified. I remember being so worried - that I emailed my BS - to see if it could get biopsied. And, he said it was way too small for biopsy!
Hang in there. One thing that helped me - I actually got a second and third opinion (as I was sure it was mets and really needed to hear it from more than one MO that it wasn't)
0 -
Thank you Scared67. I'm trying to think positive
0 -
Fellow travelers, I think I need a "hypochondriac/reality check":
Situation: I have persistent, really bad, rib pain on the BC side, chronic back pain and weird lump on rib 2.
Background: My Dx was in 2015 almost 2 years ago. My ALP is normal. My blood calcium has not been tested since the Dx. It was normal then. My onc does believe that marker tests provide reliable info so those have not been done. She also does not do liquid biopsies. The rib pain has been dismissed as costochondritis (which it may be - but boy is it painful). The back pain has been dismissed as "lots of people have back pain." I'm thinking it could be arthritis. My PCP tells me there is nothing that can be done for arthritis. (I was sort of absorbed with the cancer thing and have not read much about arthritis but I am not convinced that "nothing" can be done if it really is arthritis... but that's a different issue. In a twist of good luck, I got a cortisone shot for frozen shoulder and it improved the back pain about 85% - so it is much better for now.) My PCP sent me for a mammogram for the lump on my rib. The lump is @ 2 inches from any breast tissue so that diagnostic test was of no value. The radiologist called it a "palpable abnormality" and referred me to my surgeon. She palpated it and said she wasn't worried about it, she thought it was just an anatomical abnormality. I can tell you with a high degree of confidence that that bump has not been there all my life. Sometimes it is sore, sometimes it isn't.
Obviously, what we all worry about is bone mets. I don't think I am an obsessive worrier. In fact, I tend to think I worry very little about a local recurrence, which is probably much more statistically likely. It's the constellation of symptoms and the chronic pain that troubles me. My oncologist has told me that catching metastasis earlier than a point at which it messes up your lab values does not improve outcomes so she doesn't believe in "fishing expeditions." On one level this makes sense but as my sister in law very "vividly" pointed out, "if they're wrong, you're the one who's dead."
Anyone ever faced this? Can you share your experience about what diagnositcs were recommended or useful? I want to be an effective self-advocate but not a hypochondriac. Thanks for the reality check!
0 -
Hello, Lumpie. Here is my opinion. First, I am not saying that I think you have bone mets. You do have a personal history of breast cancer and a new, sometimes painful, palpable abnormality on a rib. Therefore a bone scan to rule out bone mets would be an appropriate next step. It is not a particularly expensive test and not a lot of radiation. (Some oncs do a baseline bone scan for all their patients, even though it is not standard.) It is reasonable to insist on some imaging of the area in question. Hopefully it will put your mind at ease. I doubt that lab values always accurately reflect what is or is not going on. Can your onc absolutely guarantee that they do? As for the oft-cited adage that catching mets early does not improve survival, that may be true, but catching them early can have a big impact on one's quality of life. In the case of bone mets, is it better to find out sooner and adopt a new treatment that may control them for a long time, or to wait until later and find out because a bone has broken and requires surgery? Do not apologize for advocating for yourself. If you have the appropriate tests and they are all negative, but you can't then accept that you are ok, then you can start to ask if you are suffering from anxiety or hypochondria.
0
