If you are not Stage IV but have questions, you may post here
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My wife was recently diagnosed with BC Stage 4 with bone and lymph areas. Can I ask questions here or some where on this site. There is so much we dont understand. We had one onc tell us that it is not curable but treatable for a long time maybe 10-15 or more. Then we went for a second opiion and were told 2.5 was the aveveage. She was deflated and devastated.
Thanks
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Hi Welies and welcome. You sure can ask questions here any time you like.
It sounds like your second opinion was quoting old standard statistics, the same ones that were told to me years ago.......I'm still here.
Metastatic BC can never be cured but it can be controlled for a long time. I think I would be sticking with your first onc as he/she seems to have the right attitude.
Welies as I said before, you are welcome to ask question here but sometimes you will get better response if you start a new topic with your question in the stage IV area of these boards. If you are unsure how to do that just PM (private message) me and I'll tell you how.
Love n hugs to both you and your wife. Chrissy0 -
i printed out an explanaton of stage 4 bc and gave it to those friends who seemed interested. helped with repetative questions
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Thanks Barb that was a great idea.
Love n hugs. Chrissy0 -
What does skull mets look or feel like? I have like acne onmy skull two year Stage III survivor but this doesn't feel right and I don't want to call the onc with every little thing. Thanks ladies
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I posted earlier on another thread "Here I am.....concerned again" and discussed an earache I am having. Well I sat down and really thought about all the funny things that I have been feeling in the past couple of weeks and wonder if anyone has any thoughts. Here they are:
Constant headache, vertigo, mild nausea, clumsiness, head feels full, earache, lethargy, trembling hands, sleep disturbance, food has no taste, using wrong turn signal when I know which one I should use, typing wrong letter while looking at the one I am trying to type, general feeling of being unwell.
I see my onc. in three weeks. Should I push the issue of an MRI? Thanks for your help. Namaste'.
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Maureen sorry it has taken so long for someone to answer you. I'm really sorry I don't know what skull mets are like but I always work on the premise that if something has been bothering me and is not the norm I mention it toy doc and get his input.
Mrsmith what you are describing is quite worrying because there are so many thing happening at once and I would certainly have the discussion with your onc re some testing to find out what is going on. Here's hoping that what you are experiencing is an inner ear problem and nothing else.
Love n hugs. Chrissy0 -
I have a close friend who has bone mets. Do any of you know of any complementary/alternative treatments for bone pain? Has anyone tried acupuncture for that? Thanks.
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Wrsmith - have to agree with Chrissy - that combination is worrisome. Prepare for you visit with detailed notes of your symptoms. Getting better or worse? Any other brain mixups that are unusual for you? Reading or writing prob? Balance issues? Hearing? And if your onc isn't worried - see your family doc. In case it is a problem unrelated to breast cancer.
I would expect at least a physical /neurological exam including things like watching you walk, checking your eye movements, reflex hammer tests including bottom of feet etc. And probably a CT or MRI if symptoms are not going away
Keep us posted!0 -
Sdstarfish - does a heating pad count as complimentary? A nice long one - advertises as moist heat - helps when I get muscle spasm as a result of the bone mets in spine.
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Lisa I use Boswellia Serata. It is a herbal anti inflamatory which helps relieve the pain. It does not work for everyone but it's worth a try keeping in mind that it may take a month to really feel the difference.
Hope this helps your friend.
Love n hugs. Chrissy0 -
Baldeagle, I think a key issue for you is that you never had scans at diagnosis. Most ladies with positive nodes have them. You need to check the NCCN guidelines for initial treatment rather than followup. Yes I know you are now at followup stage but I still think you can make a case based on the initial guidelines (which I haven't read recently).
wrsmith2x, I think you should see a doctor ASAP, not wait three weeks.0 -
I posted this elsewhere, but was thinking I might get more responses here.
I am asking this of those who had local recurrences:
1) How long after your primary diagnosis was your local recurrence found?
2) After the first local recurrence, have you had any more local recurrences? If so, how long between the two?
3) After the first local recurrence,did you go on to develop distant metastases? If so, how long between the two?
4) What is your ER status?
Thanks, just trying to figure out what's next -
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Question for Learnin, please:
You mention your back spasm from spinal met(s). Can you explain the difference between a spasm and just a tired achy kind of feeling in lower spine when I have been on my feet all day? It goes away as soon as I sit, but am interested to know if there is a difference in what the two feel like. Thank you so much,
Linda
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I also posted this elsewhere. My Bs wants me to see an oncologist even though the mass that was excised is b9. He said since I have swollen nodes, a somewhat distended liver, shoulder and rib pain (feels kind of like a tooth ache in those bones) he wants to rule out breast cancer. I've also lost 40 lbs in thast 2 1/2 months. Kind of cool but not. How often is stage IV BC found without a mass? And what kind of tests do you think the oncologist would do? Thanks for any input. I'm just a little worried.
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I just read over those ASCO guidelines. If my ONC had followed that, my stage 4 cancer would never have been found. I had absolutely no pain in the iliac bone where my cancer was found. Well, until I had a bone biopsy. It has since spread to my femur on the other leg. How long could I have gone with no pain, so no follow up would have been done. Reading the guidelines it looks like they just let you go and if it comes back, oh well, sorry. Who is to say the tests given would not lengthen the life? If I had not had my bone lesion radiated, it would have continued to spread to other bones and organs. My life would surely have been shortened!
My oncologist told me he was my doctor for life, yet this guidelines suggests that the oncologists dismiss their patients from their practice after a year and have them go to their PCP for follow up.
This guideline is also 6 years old, so much has been done since then, and it also scares me. I am going to print it out and take it to my oncologist to discuss.
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Linda - my "muscle spasm" (my term, not an official dx) was severe enough that I couldn't concentrate on anything. Sitting didn't help. Lying was a bit better Narcotics only helped partially, even with repeated extra breakthru doses. That was one clue that it was more than just my mets. Pain that would bring me to tears.
The heating pad was very helpful, I think by relaxing the muscles enough so the narcotics could take effect on the mets pain.
Definitely different than the tired aching back of a long day that you are describing. More severe. Position change and simple medication wouldn't touch it.
Hope that helps. Feel free to PM me if you have further questions I can help with.0 -
I am not stage IV, but I think my auntie (in law) is. Three weeks ago, she had her annual mammo... this week she had a mastectomy. She has a spot on her lung that showed up on PET/CT, and she is waiting for bone scan results.
I think the spot on her lung makes her stage IV, right? Unless it turns out to be unrelated to breast cancer...
I called her yesterday, and I told her that if there is one person she can be all negative with - that'd be me. I told her that she has to choose such people carefully. So many expect the positivity to be the ONLY attitude... and we all have bad days, whether we're cancer patients or just regular people. But, when we're cancer patients, people do not want to see krankiness or any other less than positive attitudes / feelings.
I've offered to research anything she'd like (I'm at a University, so this is fairly easy for me to do).
It was a pretty long phone call, actually. She clearly wanted to talk... so I feel like that was a good thing.
Beyond that - I'm not sure if there's much I can do.
I think I'll send her a chemo care package - chemo is definitely coming soon.
We're not terribly close - I mean - we're family... but I've only spent time with her around a dozen times. I don't know her very well. But, I want to be a source of support in whatever way is possible.
So... please share your advice! No tidbit is too small nor too large.
Thank you.
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Minxie, you probably already know my answers to your questions but I'll post for others.
I am asking this of those who had local recurrences:
1) How long after your primary diagnosis was your local recurrence found? 4 yrs, 1 month, 3 days
2) After the first local recurrence, have you had any more local recurrences? If so, how long between the two? Only one local recurrence so far
3) After the first local recurrence,did you go on to develop distant metastases? If so, how long between the two? No mets yet
4) What is your ER status? Negative0 -
Learnin:
Thank you so much for you response. It helped a lot! I wish you all the best, always,
Linda
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Minxie,
You had a question on what's next. I don't think anyone knows for sure and everyone is different. It looks like you already had a local recurrence? Are you being treated now? For me my recurrence happened 3 years after I had my first diagnosis and I did have lymph node involvement. It came back to the same axillary region and my neck. I was put on a clinical trial which got rid of those nodes but it developed in my other axillary and between my lungs in a matter of 3 months. I am her2+ which is aggressive and grows faster.
If they find the right drugs it may never come back which is something we all pray for. Good luck to you!
On another note, does anyone know how they diagnose bone mets? Is that seen on a cat/pet scan? My dr is always pushing on my shins and asking if it hurts so I didn't know if that was how it was found.0 -
Hi BikerLee sorry to hear about your Aunt. You asked if the spot in her lung was BC then would she be stage IV? The answer is yes but that spot may not be BC. There are a lot of things that show up in our lungs that are harmless or the result of bad infections many years before. Depending on how big that spot is, her doc may ask her to have a biopsy done to confirm. I'm hoping for her that it is indeed something other than BC.
As for what you can do for her, I think you are already doing quite a lot and letting her know that she can be free to let her emotions out with you was a very knowledgable and caring thing to do. That chemo care package sounds wonderful. Perhaps her DX and your own will bring you closer together.
Paty my bone mets were found on a bone scan and confirmed with a CT/PET. Prior to these being ordered, I presented with pain in my arm and swollen nodes in my neck.
I don't understand why your doc is checking your shin as it is a well known fact that mets rarely go below the knee or elbow. The most common leg bone to be affected is the femur.
Love n hugs to both of you. Chrissy
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Paty - my bone mets were found when my tumor marker rose and it was confirmed with a bone scan. My onc checks my spine for pain, and asks me about pain anywhere else.
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FYI: I have had a spot on my lung since my first scan - it's never changed. It isn't cancer. It is a spot from an old bronchitis or walking pneumonia I had as a kid and they are very very common. Even people with cancer have benign lesions growing inside us, we are just lucky enough to get to see them. There is as much weird stuff growing inside us as there is outside!
My advice to you for dealing with your aunt, BikerLee, is don't jump ahead of official diagnosis to the "worst".
By all means, send her a little gift, but don't send her a chemo-care kit until you know she'll have chemo. For many people with mets, chemo isn't the first line of treatment anyway, many of them start with hormonals. I know I wouldn't want to be treated as Stage IV until I actually was STage IV. (Which I am). Also, different chemos have different side effects. You don't lose your hair on every chemo so if you send a bunch of bandanas or something and she's on a chemo that she won't lose her hair, than you are off the mark. So wait for that kind of medical help until you know what she needs.
It's wonderful that you are a sympathetic ear. Dont' give her a terminal illness before she has one. Right now, she's testing as many woman who have had early stage breast cancer end up wtih benign spots.
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BikerLee, don't forget to suggest to your aunt to join this site, if you haven't already.
Coolbreeze, very good points you make.0 -
My auntie said she's definitely doing chemo - according to her docs. Also, radiation. Right now, she's at home healing from a radical mastectomy. Yes - radical. Also, she had a node biopsied, and that was positive. So, during the mastectomy, they also did a full axiallary node dissection.
I definitely would NOT send a care package without being sure.
She gets her bone scan results probably a day or two from now.
I hope hope hope that spot on her lung is NOT breast cancer. I hope hope hope it sooooo very much. She definitely had one positive node...
From her biopsies, I thought she would know her hormone statuses... But, she does not.
So, I'm just waiting with baited breath for those pathology results... hoping that there were clear margins and only negative nodes.... and I hope that bone scan comes back clean....
Thanks for your responses....
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I just wanted to say thank you for starting this thread. Wasn't sure where on Stage IV to write this. I had an aunt pass away last year, and a friend in January. Both diagnosed with stage IV from the get go. I was so aftaid I would say the wrong things, but wasn't sure what to say. I didn't want to always have a pitty face, but wanted them to know I cared. I have read other threads on the stage IV forum and it has helped me to understand how they felt. Now, I will use this knowledge with the others I know that have cancer. So thank you to everyone for your point of view.
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Some up and up news... My auntie is hormone positive... and she has had lung issues in the past. So, the spot may very well be related to lung issues - not cancer. Spoke to her tonight - she seems to be feeling better and stronger - definitely tired. WAITING for pathology results and bone scan results sucks!!!!
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Hi - I posted this under the Pain thread as well, but thought I may find more answers here. Thanks in advance. For those with bone mets I am trying to figure out what is going on with my lower back. I have been having pain for over a month that is worse with sitting (especially after driving my work commute which is 40 miles each way and sitting at work). I seem to get some relief when I am not sitting all day but there is a constant spot that the pain seems to be generating from. I am not sure if I should be calling my oncologist or I am just being paranoid. Has anyone with bone mets to the lower spine experienced this type of pain that is worse from sitting? Thanks!
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Hi Collett,
I don't have bone mets, but the pain you're describing needs to be checked out. It sounds similiar to my brother's description of what turned out to be a compression fracture of one of his vertabrae -- he's in PT to rebuild his muscles because of an inflammatory condition.
There are a load of things that can cause back pain other than mets -- here's hoping that your pain is in that category and treatable without invasive measures.
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