If you are not Stage IV but have questions, you may post here
Comments
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thank you Chrissy. I will be speaking with my MO, as this is a big change for me. One I am definitely concerned about. I could be cumulative from finishing all my A/C cycles, but want to try and figure it out before I start the 12 Taxol and my year of Herceptin.
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Robin, a lot of the personality type issues can also be put down to the stress that we are all under when dealing with this disease and its treatments.........just another thought. I'm glad that you will try to get a handle on it before you start your new round of treatment even if its just to put your mind at ease. Good luck.
Love n hugs. Chrissy
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I wonder there seems such disparity among stage 4 sisters. I suspect that the grade and features of their tumors makes all the difference. I ask because I seem to be progressing quickly from stage to stage. It makes me think that i'll progress through the entire course (how's that for a euphemism?) pretty quickly. grade 3, er/pr+her2-, lots of nodes even after ACT, tumor was occult until bmx so it's .7 cm size is not predictive I'd guess. What do you all think? V
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HVV this sort of question arises alot but is voiced very little as very few want to think that they may end up stage IV and I can't say I blame them.
There are women who go to stage IV when they have started at stage I while others at stage III never progress. Having no nodes is no guarantee that you won't progress just as having many will guarantee you will. This disease seems to have no rhyme nor reason for doing anything it does.......all we can do is the best we can by following the treatments that are recommended and hope that it is enough.
Yes we know that some types of BC is more aggressive than others but we are living in an age where there are more treatments available than ever before and more are being fine tuned everyday. I remember when I was a young teenager a friend of my parents was dx'd, had a mastectomy and chemo and died twelve months later.........that was 50 years ago......35 years ago my own SIL was dx'd had a mastectomy and nothing else and she is still fit and healthy other than things effected by aging.
What I'm trying to say is we have far more hope now than ever before and just because you seem to be 'going through the stages quickly' you may never reach stage IV.........and I really hope you don't.
Love n hugs. Chrissy
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Chrissy,
Thank-you for being so generous with your time and positive encouragement on this thread. It is so appreciated.
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I second that for Chrissy!! Chrissy, I am sure you have a very busy life, but you answer every question promptly and you are so kind and caring! Thank you!!
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Ive posted before about highdose tamoxifen and just found an article I would share; http://www.ncbi.nlm.nih.gov/pubmed/23818373
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My MO is sending me to a liver specialist because my liver enzymes have been going up for 10 months. I haven't had any scans. Is this a common symptom of liver mets? I've had to wait a month for this appointment, so I am trying not to worry, but I'm definitely wondering.
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Hi Mammalou, there are numerous reasons for raised liver enzymes, mets is just one of them. If you have an inflamed pancreas it will push your enzymes up as will something like hypothyroidism or being overweight and the list goes on and on.
Try to relax a little and not worry too much.........I know that's a very hard thing to do but do give it a go, your doc is being very careful with you by sending you to a specialist and that is really a good thing.
Good luck with your visit.
Love n hugs. Chrissy
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thank you Chrissy., I have actually been doing well for 3 weeks at not worrying too much. I'm using this as a good opportunity to live in the moment and at this moment everything is fine with me. So, just trying to hang in there, but I have to admit I'm counting off the days mentally until my appointment.
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Mammalou there is nothing wrong with having a countdown.......for some strange reason doing that makes the time seem like it goes faster.......
Love n hugs. Chrissy
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Ever since I have been in the Tamoxafin I have had issues with my right hip and leg. Not really pain just a lot of stiffness and what feels like inflammation and also like my joints are loose. The looseness is especially felt in my ankle and knee. My leg is also constantly cracking as is my hip sometimes. Sometimes it feels like my hip and ankle are inflamed, not painful just full and stiff. I had a ct scan for my entire chest down to my pelvis a few months ago and it said no bone lesions on the report. I am just wondering what this is and if it could be the Tamoxafin? Are there other tests I should be having to see what this is? I would be more concerned if it was painful but it is just weird more than anything else. Thanks!
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Hi Shoppygirl. If you have recently had a CT and it says no lesions found then I would be guessing that what's going on with your hip and joints could definitely be linked to the Tamoxifen. The only other test that would take in the whole body would be a bone scan but that can also show up arthritis as well.
My suggestion would be to have a talk with your prescribing doc, see if a whole body bones scan is warranted and what you are feeling and see if he has some suggestion as to alleviating it for you. These drugs do cause all sorts of problems like bone and muscle pain, cartilage shrinkage and inflammation in joints but equally sometimes the simplest of changes either to the way we eat, move or do things can go a long way to helping alleviate the symptoms.
Love n hugs. Chrissy
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So I was dx'd at stage 3, that was 10/24. Is it possible to progress after surgery with mets if you haven't started treatment...I mean can it go that quickly? My chemo has been delayed due to infection and hope to start very soon. I feel sort of silly asking this question, like I'm being an alarmist, but its weighing on me. My MO last week said she didn't think I would need more scans, but this week I've had pain in my lower stomach that comes out of now where and I will literally gasp when it hits. over thinking much?? Yes...probably.0 -
Hi Tangandchris, anything is possible but in this case not likely. The pain you are feeling in your stomach sounds more like anxiety than anything else besides, stomach is not usually the first place to get mets.
Ask your doc for some anti anxiety meds and hopefully it will settle down as you begin to mellow out.
Deep breath and try to relax......I know it's not easy but it really is essential.
Love n hugs. Chrissy
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Thank you Chrissy!
As always you are lovely, wonderful and helpful!
I was also assuming that if there was a bigger problem there would be pain that gets worse. Would this be correct?
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I do have anti-anxiety meds, thankful for that! Wonder what I'd be doing without them
I know there are no "rules" with this nasty stuff, but how long can it take for mets to occur? I discovered my lump in the shower, and I literally felt it one day and the day before I swear it wasn't there. I know logically it didn't appear overnight, but it sure seemed to come out of nowhere.
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Shoppygirl you are partially right. Usually there is pain that gets worse on a gradual scale but sometimes bone mets can show up with no pain to begin with. With this in mind, it's always a good thing to communicate any changes with your docs.
Tangandchris in reality there is no one that can tell you how quickly or slowly mets will show up all we can do is follow what is recommended treatment.
I know, even though you are taking anti anxiety meds you are still extremely anxious over this question so I'm still sure that it is the anxiety causing your pain by creating inflammation.
You are right, finding your lump seemingly overnight is scary but it would have been there for a while as Grade II is a moderate growing cancer. I am sure you would have had the normal staging scans so I would be holding on to those results as well as the fact that it probably took years to get to the size it was. Having chemo delayed after surgery due to other things is not uncommon.
Love n hugs. Chrissy
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Can anyone that was dx'd with distant mets to ribs and/or pelvis describe what that felt like? And what do they feel like in the beginning stages and was pain there only when moving or actually touching the ribs? I hope that my many aches & pains are still ongoing result of taking tamoxifen. I know I could probably post these questions to the Stage 4 ladies, but wanted to start here first.
Any experience or opinions would be awesome !
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Shelly this is the appropriate thread to ask your question as it is monitored by stage IV ladies.
To answer your question Re rib pain. I do not have mets to my ribs but I do have rib pain.........it is a deep burning pain when pressing (gently) on the area and like you my first thought was mets. I have had scans etc and there are no mets present. I have been told that that pain is caused by inflammation.
Sometimes when mets start,there is no pain what so ever it's only if they are pressing on a nerve or if in a weight bearing bone that has become like honeycomb due to the mets that pain becomes a real issue. Your pelvis can be very painful when affected by the mets as it is a major boney area but arthritis can also affect all of these areas.
As always, if something is worrying you that much you should get it checked out by your doc........peace of mind is everything.
Love n hugs. Chrissy
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Hi Shelly56, my mets to the spine and the pelvis didn't hurt at all. I had a sore back -- due muscles which were trying to hold my spine in place.
Some ladies have painful mets, some not. Your aches could certainly be tamoxifen.
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My best friend/sister passed away in July of last year and I was her biggest fund raiser. Raising money for her required to me to know as much as possible about her disease. We actually raised $25,000 dollars and she flew to Switzerland and participated in Dr. Rau's cutting edge therapies. Her initial diagnosis was in April 2003 and she said she was diagnosed with Stage 2b with four positive lymphnodes. Her cancer returned in February 2011. Once she passed away, I learned that her initial diagnosis was actually Stage 3b with 16 positive lymphnodes. My question .... has anyone else dealt with a patient that down played their diagnosis to an extent that was not truthful? Hope I don't sound too judgmental, I'm just trying to understand why this occurred. Even in the end, she refused to sign a DNR and if anyone questioned her about this, she would snap "you go sign a DNR." I was thinking that this may have been an extreme form of denial. She had two children (ages 15 and 10) so maybe that is why. I know no one really has the answer to this question, but was hoping you kind ladies could give me your perspective. Thanks everyone. I pray for each and everyone of you on BCO every single day.
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Hi Ween, sorry that you lost your best friend to this ugly disease, condolences.
No one likes to think that they are possibly facing death and living in denial about the extent of your disease is not uncommon. A few years back I lost my cousin to lung cancer, three years after her dx. Even on her death bed she was refusing to acknowledge the fact that she was dying and kept insisting that she was okay and wanted more treatment.
The will to survive is genetically built into the human psyche just as it is in all things and we will do anything in order to live. By your friend denying the extent of her disease she was exercising that inbuilt desire for life and self preservation.
I'm sorry she basically lied about how bad her cancer was and looking in from the outside and comparing her action to that of my cousin I would say she was very much in denial........but that is the way she coped with the whole dx.
It really doesn't matter if she was 2b or 3b, 1 node or 20 nodes the outcome was the same. You were a good friend to work so tirelessly to raise funds for her and I'm sure she appreciated it very much but she did what she had to in order to get through each day.
Love n hugs. Chrissy
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Hi Ween,
I hope that it's okay that I post a response here even though I am not stage IV, I just wanted to say that staging is not as cut and dry as it may seem after the fact and neither oncologists nor surgeons share staging info with patients to the degree that one might think. I don't know precisely what my stage is - I had a 9cm tumor with an undefined number of lymph nodes involved at biopsy. I don't know how many lymph nodes were aspirated - the basic info is that 4 to 9 LN appeared cancerous (could have been more or less that actually were). After neoadjuvant chemo, I was staged at 2a - which makes no sense as I had already had chemo, so my tumor size had been cut in half and the number of nodes with viable cancer had been (for sure cut down).
Then there's this (from cancer.org) :
A cancer’s stage does not change
"An important point some people have trouble understanding is that the stage of a cancer does not change over time, even if the cancer progresses. A cancer that comes back or spreads is still referred to by the stage it was given when it was first found and diagnosed—information about the current extent of the cancer is added to it.
For example, let’s say a woman was first diagnosed with stage II breast cancer and the cancer went away with treatment. But then it came back with spread to the bones. The cancer is still called a stage II breast cancer, now with recurrent disease in the bones. If the breast cancer did not respond to treatment and spread to the bones it’s called a stage II breast cancer with bone metastasis. In either case, the original stage does not change and it’s notcalled a stage IV breast cancer. A stage IV breast cancer refers to a cancer that has already spread to a distant part of the body when it’s first diagnosed. A person keeps the same diagnosis stage, but more information is added to the diagnosis to explain the current state of the disease.
This is important to understand because survival statistics and information on treatment by stage for specific cancer types refer to the stage when the cancer was first diagnosed. The survival statistics related to stage II breast cancer that has recurred in the bones may not be the same as the survival statistics for stage IV breast cancer."
Me here: It's also hard to know what people mean by 'initial diagnosis'. Is initial diagnosis when you get your biopsy results back & they say it's cancer - because a staging based on that can be really different than one received after surgery.
I asked my SIL what stage she was - she said "I don't know - like the earliest because I only had one node involved" - this is one of the brightest people I know - I said," but you had chemo, so it's got to be a higher stage than 1a which is still higher than 0. "
She shrugged and said - yeah, I guess. I don't think she's in denial - I think she just doesn't care.
I don't know exactly what my stage is - I never will, but it really doesn't matter that much to me. It's somewhere in the stage 3 range & that means I am going to be dang sure to do everything I can to try to stay alive. Maybe your friend was in denial - maybe she just didn't pay that much attention to this kind of thing.
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Oh my goodness....thank you ziggy and chrissy. You both have been so helpful to me. I was feeling kind of guilty for some reason. Thanks again. I hate this disease.
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Hi everyone. this is not a question per se, but Ziggy, i had read that before about the stage not changing. it really doesn't make any sense to me! all over these threads you will see women saying now stage lV. or, if i did get mets, would i get to change dx on tagline? because if not, then if i needed to move to 4 threads, they would see i was "only" lllc. i don't know, curious, is all. oh boy, now i can go bugging everyone, by asking them that Question! thanks, and good morning to all.
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Kathc - It is confusing and that really was my point, how you look at the information varies. I think that for those in the medical profession stage doesn't change - and this makes sense because if you are recording info on treatments and how well or how long they worked, it's important to have a standard point of stage assessment. But that doesn't work very well for those of us 'out here'. If I gave my stage as it was given to me - it would be a 2b - that's because even though my tumor was 9cm and I had a minimum of 4 pos LNs, I had neoadjuvant chemo & since the staging was done after my UMX, things had changed. And that's the point I was trying to make about Wren's friend - staging just isn't all that clear. Somebody might look at how I post my DX, and say it's a lie - but if I told somebody I was 2b with a 9cm tumor & a minimum of 4 positive nodes - it would be really confusing. Anyway - I don't want to hijack this thread. Wren, it's really great that you helped your friend. That's what matters.
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ziggypop,
I was never officially staged (I did not want to know) I was too scared. But I worked it out myself.
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Hi Chrissy,
Thank you so very much for having this thread. We all really do appreciate the answers to our questions. I just wanted to run a quick question by you. I saw my onc yesterday to discuss results of a CT Chest Scan. They've been watching a stable 3mm nodule on left upper lobe of lung that was there in 2009 base scan. It's been stable since, and the last scan I had last month shows that it grew from 3 to 4-5 mm. Radiologist said stable, Onc not worried. My question to you is this: Do nodules disappear or do they keep growing, and can a stable nodule turn into a mets nodule if it keeps growing past 5mm? Thank you for your response, Chrissy.
Oceana
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I just got back from the Stephanie Center. Appointment was with Carmen, the nurse practioner. I showed her the tiny lump above my surgery site, and she found a second one.
She went to get my onco, Dr. Mrozek, who was there within 2 minutes. I told her, "If this is another cancer, I'm going to be so angry!" She said, "and I will be angry too!"
They called downstairs and got me right in for an ultra sound. I only waited a few minutes to be seen.
Thank God it's only scar tissue! Hallelujah!
Nobody likes scarring, but after BC, scar tissue is excellent!
I so love the Stephanie...everything under one roof. Hugs from my Dr. and nurse/pract.
My doctors, surgeon & onco work together. They're the DYNAMIC DUO!0
