If you are not Stage IV but have questions, you may post here
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Ladies, you are right. Chrissy is an amazing lady
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Best to you all.0 -
Hi everyone - I have been off the boards for awhile, busy with kids, summer, etc. I had asked questions here a few times and Chrissy and others were so helpful. I wanted to pass along an experience I've had the past few montsh becasue I have seen this question posted many times (I have probably googled it 100 times myself!). My concern was a sore hip, and worrying it was related to BC. It last for 3 months, my MO ordered an x-ray and said it was nothing, but my primary knew I was losing sleep over it, so she ordered an MRI. Turns out it is bursitis in my hip. I know this is common, but at 43, I've never ever had hip pain pre-BC, so of course the first place my mind went was to BC. Anyway, I know the only way to determine whether there is a true problem or not is to call it to doctor's attention and get any appropriate scans, etc., but it's good to know there are often perfectly unworrisome explanations for some things - I am still reminding myself of that often, and it's a process.
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shore1 - Yes, the aches and pains that plague us after a bc dx can definitely be worriesome. Thank you for reassurance that there are many, many other possibilities for the discomfort/pain other than bc. Of course you are right that any problems that last for more than 2 weeks or so should be brought to your drs attention.
Glad that you are enjoying your summer!
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Hi Ladies!
I have a question. I was dx'd last October with a tumor in the lymph nodes on the opposite side of my orignial cancer. After much testing and finding no other cancer, I was dx'd with staged IV metastatic breast cancer. I had 9 rounds of taxol, then surgery in which 28 nodes were taken out, 3 with cancer including the tumor. They said it was "clumped"? So to get down to the question, after reading thru this thread, I am confused about stage IV , as the cancer is not yet spread to body or organs. Please comment.
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Hi KarenMarie understanding of all of this can be very confusing. To my understanding and according to your post and question you have been dxd as stage IV with tumor in the lymph nodes on the opposite side to your original dx. It is because the new tumor is on the opposite side with no cancer in the breast itself that you have been staged at IV rather than a recurrence. Had there been cancer in the breast near the nodes your staging would have been as a recurrence.
There are so many variences to all of this its is hard to wrap our heads around it sometimes but the definition that I read most is 'the cancer has travelled to a distant location from the original breast'.
Hope this has helped a little.
Love n hugs. Chrissy
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Thanks Chrissy, it helps tons! (((hug)))
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Hello,
I have been looking online for a description of a dry cough to worry about but haven't found anything. I am 550+ days breast cancer free (no I don't actually count, someone asked me the other day so I looked it up
and have had a dry cough for over two months now. Hospital put me on steroids for a couple weeks, worked a bit but came back right after I stopped. GP has me back on steroids and an acid reflux drug, neither really working. We are going to go to CT scan next but I wanted to try everything else before I take the radiation hit. Here's the thing. Although I am paralyzed with fear right now, a feeling I don't have to explain to anyone on this site, it doesn't feel like a lung thing to me. It feels like a dry irritation in the lower back of my throat. I don't have shortness of breath. Can take a big breath without causing cough. If anyone has experience with a dry cough that ended either in a positive way or not, please let me know how you felt. My family is just getting back on our feet after losing my 33 year old sister in law to cervical cancer, I am terrified to put them through this again. I'm sorry if I'm posting this in the wrong place or if the question has already been addressed somewhere else. 0 -
Ther are many reasons for dry coughs. Most are not related to cancer. However I di experience a dry cough while on Afinitor. It has now been recognized as a serious side effect of that treatment. I went to a pulmonologist to review my X-rays. He pointed out the small area of damage. It took months before it resolved. As you say steroids help some but not completely.
I would ask for a pulmonologist referral so you are seen by an expert in tht area.0 -
Thank you, Chickadee,
It didn't occur to me to blame Tamoxifen, which is odd as I blame it for so many other things! I just checked out some posts by other tamoxifen users and it seems that they suffer with some dry coughs too. I won't know until I know but I appreciate your post. You've calmed me down a bit. I'm am so sorry to see your Dx. I wish you well. Thank you for being here.
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I was just about to post a question about a persistent cough for my mom as well. She had a CT scan last month which showed some stable and some regression (bone and lymph nodes). Her lungs were found to be be clear. For almost two weeks now she has had a mild but persistent cough that she feels is coming from a tickle/tightening in the throat and not her lungs. She also has some very low grade fevers on and off. She was switched from Aredia for her bones to Zometa because of side effects (lingering flu-like symptoms that lasted up to 10 days after the infusion) and has felt better and doesn't feel the cough is related to the switch because it began the day before her first Zometa.
She's been on Aromasin for 6+ months now and hasn't had any issues with cough until now so we don't think that could be it either. Any ideas?
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Canadagirl, the cough can start months after changing meds so it more than likely is caused by her Aromasin. I also have that dry persistent tickle cough but it comes from my Femara but didn't start until about twelve months after I started taking it. It has resolved pretty much but it did stick around for quite some time.
I think all of the AIs including Tamoxifen can and do cause this symptom and can be mistaken for mets. If testing has been done and all coming back clear I would put it down to meds.
Love n hugs. Chrissy0 -
Some develop drippy noses on treatment, perhaps it could be post nasal drip.
There seems to be nothing treatment can't affect.0 -
Hey canadagirl, I'm from up here too! I hope your mom's treatment in Ontario has been good?? I have been very well cared for in Alberta. I live a very happy life post-cancer, until something feels wrong and then a dark cloud covers me until I get an 'all clear' from my doctor. I hate how the fear of mets can dampen my happy times so completely, but it does. My doctor tells me that this will get better in time. I would prefer hearing that advice from someone who has walked the walk, but I appreciate his words all the same. All the best to your mom. She's lucky to have a daugher who takes the time to inquire about her. So, all the best to you too! During these past years of my life I can honestly say that it has been easier being the person with cancer than it has been watching a loved one have cancer. I'm sorry for you and I'm sorry this happened to your mom
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Hi I have searched for information about higher doses of Tamoxifen because it was mentioned by my onc as a possibility if my periods returned. I couldn't find a lot but came across an article about "high-dose Tamoxifen" (doesn't mention how many mg that is) in advanced breast cancer and there seemed to be promising results although it was a small study http://www.ncbi.nlm.nih.gov/pubmed/23818373.
Have anyone heard of this or does anyone have some more information about higher doses of Tamoxifen?
I think it's very interesting. I found another article which mentioned something about tamoxifen working in "different ways" when used in higher doses...
Thanks in advance.0 -
Hi Newdirection, I have heard of and read about some early trials for high dosage Tamoxifen in some brain cancers and patients with Hormone-refractory Prostate cancer but not for breast cancer. Thanks for the link........interesting.
Love n hugs. Chrissy0 -
ok thanks for your comment... In the meantime I just found the article here http://www.jbuon.com/pdfs/532-534-Stathopoulos.pdf where more information is available.
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Thanks
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What exactly is cachexia and how is it diagnosed? My mother is stage 4. Mets in lung, liver, bone and brain. Since her diagnosis 7 months ago she has lost 24% of her body weight. She simply doesn't fancy most foods, they can make her physically sick. It can be the smell or texture. Often the texture.
She has a limited few foods she can tolerate so manages some of them. Small amounts.
She stopped chemo (with the exception of herceptin) over two months ago. We were hoping she would be fancying more foods again now but it isn't the case.
I am scared.
Anyone know if this is a common thing that happens? Can it be reversed? I worry.
Thanks all xx0 -
Hi Papillon. In general terms it is the wasting of muscle and loss of body mass and is often seen (about 50%) in late stage cancers. So far, there is no effective treatment.
If ingestion of food has become a real problem, your mom may need to have a feeding tube inserted but that is for you and her to discuss with her doctors.
Papillon im sorry, as hard as it is to face, your mom's time with you is getting shorter.
Love n hugs. Chrissy0 -
Thanks. That is kind of what I expected to hear. Just wish I knew how short is short.
She wasnt skinny to start with so hopefully that will give its a little more time.
She doesn't want to know a prognosis and I live away so don't speak with her oncologist. I really do feel so lost for where we really are.
Thanks for being honest Chrissy xx0 -
Papillion1, Chrisie - excuse me for barging in; they prescribed by Father a drug called Remeron when he had Cachexia , lost a lot of weight and found food unappealling. It is actually an antidepressant but they use it for this in people with late stage cancers, etc. It truly helped bring up his appetite and keep some weight on. The doctor said its used fairly often with people who have late stage cancer and other diseases like COPD that can waste your weight and muscle. It helped my Father; Just wanted to share our experience and a solution provdied by the MD.
Good luck.
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Thank you Bevin, it's good to know that something worked for your father. There are a few drugs used but none so far have proven to be long lasting.
Love n hugs. Chrissy0 -
Thanks Bevin. She sees her oncologist on Monday so she will discuss the weight loss and see what he suggests. Glad it helped your dad.
I think the weight loss doesn't really bother mum so much, but the lack of normality does. And mostly she feels bad becuase she knows it upsets my dad.And I know it gets dad down - eating alone every day isn't much fun for him.
Just goes to show how difficult it is for her - I know she would eat if she could.
It has really made me realize how hard being Anorexic is. Being repulsed by food you are told you need....So hard.
As if cancer isnt tough enough..0 -
papillon - hoping that the visit with your mom's onc went well today. I do hope that he has some suggestions as to how your mom might once again be able to eat some of the foods that she once found enjoyable. I have liver mets and struggle with similar issues. I know it is difficult not to have the healthy appetite that was there pre-cancer and forcing oneself to eat is quite a challenge.
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Hello. My mom was diagnosed with bc just a few days ago. It was an our-of-the-blue diagnosis, that suggest a fast growing tumor. She had no complaints, and her regular palpatory check up showed nothing, but one day – voila! A lump. In a quadrant of the breast that was to close to the axile, it seems, since she now has a T2 (19mm - 20mm) N2 (3-4 inflamed non movable cluster nodules) cancer, which puts her firmly in the III stage category. We are now waiting with battered breath till the pending scan test show if there are any metastasis.
I am a med student. My mom is my best friend. And I feel hopeless and lost, while keeping my mouth shut in order to not diminish her positivism.
What I want from you, dear cancer patients and cancer fighters, is your story, transferred in to probability. I read the studies. I spent 5 days in the library of my med university, torturing myself with prognosis for stage III cancer and it’s metastatic predispositions. But, alas, who knows anything? And what should I do with percentage? Life can not be measured.
So…how many of you had N2 cancer that turned out to be stage IV?
How many of you are currently safe, even thou you had a N2 parameter?
Did the fact that your supra and infra clavicular lymph regions were clean mean anything?
Did you have any major symptoms that symptoms before discovering metastasis?
Was your tumor size classified as bigger than T2?
Should I prepare myself for the worst?
What is the best way to rage against the world? No, really, what is it?
Well, I have shared my quest questions. All answers are welcome. Thank you so much in advance, I greatly appreciate it!
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Hi AlyonA. First up, so sorry to hear that your mom has dx with BC.........for many of us it was 'out of the blue' with no prior family history so she is not alone in that.
As a med student, and one who has immersed themselves into the studies that are available to you, you should have understood that BC is such an unpredictable as well as such a diverse disease that statistics are truly just numbers and each case has to be evaluated on its own merits. As such, there are no predictables with certainty. Those statistic can only form a guide line and a starting point for treatment.
The good thing now as opposed to even ten years ago, is that a lot of the newer treatments are now focusing on targeted treatments to try to control as well as inhibit the cancer's growth.
There are many women here who have progressed to stage IV from stage I and also a lot who started at stage III and are still doing well years later. There is seemingly in that no rhyme or reason to why some progress and others don't. As for myself, I started at stage II and progressed to stage IV at around five years.
I doubt anyone can answer your questions with certainty, all I can suggest you do is a whole lot more research and just be there for your mom.
Good luck!
Love n hugs. Chrissy0 -
As somebody in the field, but not really in to oncology, I am baffled at all these odds, ends and utter non-connectivity. You always have the knowledge that bc is an option, and out there, but once you start digging, it is just a big unknown.
I feel silly about any questions I may have (as well as those I have written) because deep down, I am just unable to fully understand, on a personal, non medical level.
The ‘ohh’ factor is ever present, and the statistics are never stable, there is no mechanism...and it just makes me more scared. It’s silly, all of it – but the inability to DO brings me to my knees. I grasp at straws, and question all the years of training I have, when in the end – there is nothing to do, but wait. And maybe pray.
Hugs to all current patients and their family. Because…I don’t envy you the fight, but I highly admire the strength.
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Statistics are frightening and confusing. They were used to lure me into a treatment plan that I was not comfortable with from the beginning, but I have come to understand that they are simply that: numbers based on POPULATIONS and they have absolutely NO PREDICTIVE POWER for AN INDIVIDUAL. For an individual, the risk is either 0% or 100% and the benefit of any treatment plan is either 0% or 100%. If you have a population of 100 women, and they all have breast cancer at stage III, if you use one treatment plan, about 80-85% of them will survive 5 years or more, and 15-20% will not. There is no way, based on this, to identify WHICH of these 100 women will respond to the treatment and which will progress and/or die. This really sucks. The thing that really bothers me is that the public perception is that breast cancer is curable "if caught" and that is actually just not true.
The personal journey is another matter entirely. You can find a lot of support here, you may want to check the caregivers discussion threads. My mother is a 19-year survivor, and I can understand that "not able to DO anything" feeling. You can PM (private message) me anytime.0 -
Alyon, you can't dictate or manage your mothers diagnosis and treatment even though you desperately want to. That doesn't mean you can't do ANYTHING. Let your mother lead you to the support she wants whether it is a bowl of soup, a car ride, hand holding or a gift sent from afar just because.
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The lack of control and our inability to find all the answers can drive you nuts with this.
For every question you have there is any number of answers and none that can be the correct one. We live in a society that now expects to be able to solve problems, get the answers and be in control of ourselves. Cancer teaches us very quickly that we are often along for the ride and we have limited say in what the stupid little b**gers do. It's one hell of a life lesson.
But there is huge amount of life still to be lived. Life becomes very precious and we can be more in our lives than before. Nothing is taken for granted and the people around us that care for us and love us are very important.
I wish there were more answers to your questions but I don't have any so no help there.
You just have to walk the journey and deal with each part of it as it is revealed. Not easy at times and plain sucky at others but it is life in all it's glory so it is what it is.
I don't want you to think it is all negative and hopeless, it most certainly is not and fear is your biggest enemy. Deal with what you know, not what might happen.
As someone said here before,This is a marathon not a sprint.
And yes, while your waiting, waiting, waiting, try to life today with joy and pleasure.
Refuse to let cancer take today from you.
All the best for your mum's scans. They are scary wait times.
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