If you are not Stage IV but have questions, you may post here
Comments
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Dear Chrissy, thank you so much for your kind and informative relply. I have a feeling as well that it might be due to inflamation as well. I have lymphedema and have had two bouts of cellulitis. I have also been taking a maintenance antibiotic for a year!!! I so appreciate this thread and thank you for giving your time to answer. Love and hugs to you!!! Kathy
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Hello ladies,
Just wanted to give you an update. I was frantic panic the last time I was in here. All of my test results showed NED. I could not tolerate that arimidex. Just came off my 6 week break and my whole body feels much better. I took my first aromisin tonight. We'll see how it goes.
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srbl62, that is wonderful news!! Hope the aromasin is much kinder to you!
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Sharon that is great news! Sorry you had so much trouble with the Arimidex but I'll hope for you that the Aromasin treats you more gently.
Love n hugs. Chrissy
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Good morning ladies...
So, after requesting a PET or CT scan to determine what the pain in my ribs, femur and hips was about, I wound up getting a bone scan and though several areas (right shoulder, both hips, right knee) showed "uptake", they think it is "PROBABLY" degenerative joint process. So i am to be okay with the assumption that in a year's time, I have developed degenerative disease at 38 years old when there was no evidence of it last September? Has anyone else encountered this?
My onc doesn't check tumor markers unless someone is diagnosed Stage IV so I didn't have any reassurance from that either. I am not quite sure how I feel about the whole thing. The pain isn't really local to my joints - it is in the middle of my right femur and no amount of rubbing or massaging will relieve it. This has been going on for several months now and is starting to get frustrating because by the end of the day, my feet and legs make it almost unbearable to even walk to my bedroom. The spot under my right breast on the ribs is so tender that I won't even touch it and am extremely careful putting a bra on. Due to the aggressiveness of my cancer (TNBC; grade III; Ki-67 of 75%) I get checked out every 3 months so I guess I will wait until the October 26th visit and see if anything is better by then.
I apologize for whining as I am the type who doesn't acknowledge pain unless it is really bad but this is just getting exhausting and I don't want to find out down the road that there is something going on that needed to be addressed.
xoxoxo to y'all...
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Hi mmizerak I understand how frustrating things can be when pain is involved and you are not getting the answers you need. It sounds like the scan has really not given you an answer other than degeneration of the joints.........mind you, that can be extremely painfull.
As your onc doesn't do tumor markers perhaps you could aks your PCP if he/she will order it. Do you know if they are accurate for you?
Sure hope you get both answers and relief from the pain.
Love n hugs. Chrissy
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chrissyb ~
Wouldn't degeneration of the joints hurt...in the joints? the pain really isn't at the joint but right smack dab in the middle of the bone (in the case of my thigh) and in the hips, it feels like I should be able to look down and see a bruise but obviously I don't. It is dfinitely a deep bruise feeling though.
I wouldn't know if the tumor marker tests are accurate for me because she has never done them before - that is what I thought was so bizarre.
That's a great idea regarding my PCP. I think I will get on that as I am due for a physical anyway - although those somewhat scare me now. When I went for my physical in August of 2010, I wound up having to have a total hysterectomy and at my physical in 2011 - well, you already know that!
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mmizerak pain can radiate so sometimes where we feel the pain is not where the cause of the pain is. I hear you on thinking about bone mets..........I have bad arthritis in my hips but the pain I feel is in my femur that's what I mean about pain radiating.
Please never fear your physicals and never not do them. If you think about it, they have actually saved your life and that is a really good thing.
Some docs are loathe to do the tumor makers as they are very often not acurate.......mine are always well within the normal range and the only thing that moves them at all (and that is only a point or two) is inflamation so for me they say nothing. Having said that, it's not a bad idea to get a base level for you so as you already have an appointment with your PCP it will not harm anything to ask.
Love n hugs. Chrissy
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Has anyone had a local recurrence before going to stage IV? Is it inevitable that it will recur as distant mets? I can't make heads or talis of what I'm reading. One abstract said everyone they studied with a local recurrence was dead in 10 years. Another said that my type of local recurence had a 68% survival rate at 10 years.
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Minxie,
If you take the stats to heart, you'll make yourself crazy. Any stats available are - by the very nature of medical trials/analysis - out of date by the time they are available.
A trial takes 1 to five years to institute, then it takes a year or two to get peer reviewed and published. Even a meta-analysis of available data takes two or three years to get "done" and published, and uses old (ie: available) data.
So, let's say that, in a best case scenario, any available data is at least three years old. That is generous. It's most likely five years old. In that five years, new chemotherapeutic drugs have become available, and protocols have changed (for example: moving away from dose dense Taxol to weekly Taxol, and the improvement in response because of weekly dosing).
Some stats are good, some are bad, but this disease is very individual. A definite "your mileage may vary" situation.
That said - best of luck. Keep us posted, and add your data to this site by joining in. I get the best and most current information by reading this site.
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Thank you, Chrissy...
No, I will never skip a physical. I have too many reasons to take care of myself! I was just speaking theoretically, meaning my track record the last couple of times kinda sucks!
)
Thank you for the reassurance about the degenerative pain. I've been told by several today that this can also be another "not-so-advertised" SE of chemo...go figure.
I appreciate your patience with my little "freak-out" and will be checking with my PCP to see what he suggests as far as non-cancer explanations.
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Minxie...girl, I hear your panic! I know it is easier said than done but stop Google searching anything using the terms "rate", "expectancy", "statistics" or "percentages" as it will only serve to keep you awake at night instead of getting MUCH needed rest & recovery from the physical, mental & emotional roller coaster ride you've found yourself on. What you read as far as studies is only as accurate as the individual(s) performing the testing...need I say more?
Trust your doctor & your instincts (as I have had to tell myself again today, given my own hiccup in confidence) & live your life in spite of this ugly disease!
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Mmizerk - I may be the little dark rain cloud in this conversation.
I had pain for several years before my mets dx. Bone scans were always OK. Eventually a bone scans showed a single hot spot "unlikely mets" - did a CT at my request - turns out I had widespread mets liver and bone. The single hot spot I had only showed up because I had fractured a rib.
Bone mets can be osteoblastic (like scarring) or osteolytic (like holes). The osteolytic mets don't show up on bone scan.
Bottom line - if your bone scan doesn't match your symptoms, you may wish to request a CT scan
Good luck. Keep us posted.0 -
learnin ~
Thank you for your input - and you are most certainly not a raincloud. Breast Cancer is the raincloud here! I am exploring all of my options & will follow-up accordingly. Please private message me & let me know what your pain was like, where it started, etc..if your comfortable doing so.
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Dear Beloved and Strong members,
I feel as though I need some honest advice on what to expect, I am really unsure
.Sorry that it is so long but please read I will give you some background.I am 19years old, My mother is 56years old, she was diagnosed with Breast Cancer in May 2010 of the left breast, they couldn't tell her a stage (and I'm still not sure why), with her they did things a little different. They said they were going to try and shrink the tumor as much as possible before removing it. They did 12 weeks of chemotherapy (not sure which one they only used the word most aggressive every time we were there), she then did 6 weeks of radiation, with the time in between and the wait on surgery they operated and successfully removed the whole tumor through a Full Mastectomy including removal of lymph nodes from under the left arm in Mid December 2010. They then did tests and confirmed they had got the tumor, this was suppose to be the day where everything would get better and go back to normal, not the case, the doctor added the bad news on Christmas Eve may I add, the cancer had spread to her bones. The doctor now classified the cancer as Stage IV Metastatic Breast Cancer.He said her expectancy is 12months to 36months. She has been on Zometa once a month through a port they have placed in her chest, they say this will not help with the cancer but will reduce breakages and pain. Now it is 20months later and she has been well up until now, working, eating, sleeping. The family have been supportive and positive. However, last month when she went for her Zometa they said they are worried about her weight loss (8Kg in a month) she says its from eating well and going to the gym, she weighs 65kg, from there for the past two weeks she has been having sharp pain in her right hand side near the rib cage at the back (very bad, she won't ever mention pain unless it's absolutely terrible) she has been crying it's so bad, she has days where she doesn't feel like eating, she physically can't hide the pain its obvious she is hurting and it's getting worse, she gets very frazzled, she is very tired and lethargic and says she doesn't feel right, she also has these fits of laughter out of nowhere (I'm happy if she is just being happy but this is very random and worries me). But, she won't go to the hospital, she says there is nothing they can do anyway and she doesn't want people prodding anymore, she wants to be at home. She has a CT scan at the end of the month as she does every three months, I'm worried this has something to do with her liver ( I really hope not but the doctor warned us about this).
My questions are:
Does this sound like her liver?
If it does what would that mean?
Is her downward progression alarming as it is happening so quick?
Any other advise would be great, thank-you in advance.
Sorry for the long passage, I needed to vent I will worry about this all month and I can't worry to her she says I am her rock (she is divorced)so she needs me to be strong, It is so sad this happens to people with no reason why, I pray for each and every person going through this battle, so strong and couragious.
P.s.I am not intending to be negative I hope this has a positive outcome but the worry isstrong. I send her positive rainbows everyday.
Thank-you again,
My heart goes out to you, Love and respect. Rainbows of strength to all
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Hi Staystrong. I'm so sorry that your mom is going through all this. One question though or maybe two, what is her ER/PR status as in positive or negative and also her Her2 status, positive or negative. Why I ask is because if she is triple negative the treatment is slightly different than if she were ER/PR + Her2- or ER/PR+ Her2- or ER/PR- Her2+. Sorry I know this is a bit confusing but the doc should have told her these things even if they couldn't tell her what stage she was at the beginning which sounds a little unusual. You say that her cancer is very agressive so that would put it at grade 3 and if her tumor was large enough to warrant chemo first to shrink it then that would have been either Stage 2b or 3. Those things are worked out on size of tumor and spread to the lymph nodes and speed of cell divide.
As for being stage IV and the statistics that the doc quoted to her please don't let those numbers upset you as they are old statistics and it is very possible to live for quite a few years even with cancer to the liver. I am no doctor but what you describe does indeed sound like a problem coming from the liver but whether it is mets or not well that can ony be confirmed with tests. The CT she had sheduled will confirm what;s happening.
I know you said that your mom was on Zometa for her bones but was she not on anything else? no other drug at all? That information directs me to thinking that she is tripple negative ie ER/PR- Her2- and if that is the case and the problem with her liver turns out to be mets (metastisis) then I'm sure the doc or Oncologist will recommend chemo again.
As a stage IV person, she can with treatment have a good life length so please tell her not to give up but if she doesn't want anymore treatment, respect her decision even though it will be hard.
I hope this has helped a little but if you want to ask more questions please feel free to do so also please let us know how your mom's scans go.
Love n hugs. Chrissy
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staystrong - sorry that your mom is going through so much. Chrissy has given some great information and advice. I have nothing to add but do want to let you know that we are all here for you. I hope that the scans are clean and do not show mets. Let us know how the scans go.
((hugs))
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mmizerak, have you read the radiologist's report? It might be worthwhile to read the full opinion.
I would be thinking about getting another onc.0 -
StayStrong - I am so sorry to hear about your Mom. Like Chrissy, I am interested to know the hormone status of her cancer and am a bit confused as to why they couldn't stage her and why they didn't put her back on chemo one it had metsed to her bones. I am a triple-negative BC patient and though I am not Stage IV, I know several TNBC ladies who are and since TH responds well to chemo, they are living well past what your Mom's doctor gave with treatment.
If you are able to give more info, that would be great. In the meantime, I will keep all of you in my prayers and am glad you turned to this thread for support. No one - not even co-survivors - should have to travel this road alone.
Blessings,
Michelle
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Racy - I have read the radiologist's report and it says that there is minor increased uptake in several areas and that it is most likely to be degenerative disease but there are definitely more areas noted than at my first bone scan when I was diagnosed 11 months ago. I feel stuck between a rock and a hard place as far as going to another MO because mine is one of the most respected in the breast cancer field so I don't want to discredit her in any way but there has not been anyone I have talked to (except for 1 person on these discussion boards) who has never had either a PET, CT or both at least once at diagnosis or throughout treatment and follow-up visits. It just leaves me feeling very vulnerable, given that she doesn't check tumor markers either.
I am at a loss really. I just know I hurt and as the weeks go by, more and more areas of my body join the owie parade. I apologize for whining though...this week has been a rough one with the loss of three of our sisters on the TNBC thread so I am just glad to be here and doing relatively well.
This can be such a frustrating, confusing and terrifying journey...
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Chrissy et. al, I am just checking in to let you know that my MRI did not show anything that looks like bone or brain mets at this time, so the PET scan was a "false positive." My MO said "well, you have a brain, so that is good, and the rest of the MRI doesn't show anything that looks like cancer."
So for now, I stay IIIC, find joy in each day, give and receive love. I am grateful for this "reprieve", and I am grateful to you all for being here to help with that anxiety factor. I hope I may do the same for others. Blessings,
Linda0 -
Linda that's great news! I'm so glad you got good support here. Take care!!
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Congratulations Linda! That's great news!
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Yay Linda! I'm so happy that you are still clear and even happier that we could help even a little.
Love n hugs. Chrissy0 -
Michelle - Count me in as another person who hasn't had a CT scan or a bone scan, either at diagnosis or since. My MO also doesn't believe in testing CA-125 or CA15-3 because there are too many false positives. I finish rads next Monday and feel more than a little anxious that I will get no other testing or tx, just follow-up appointments. I'd at least like to hear that I'm NED. As a TN, I want to know that the surgery, chemo and rads did what they were supposed to and I am cancer-free! I'm worried that a FC cell still exists and by the time they find it, it will have spread.
How do we get past these fears? Lisa
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Lisa - Are you saying that you haven't had any scans at all, ever?
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Cynthia,
That is correct. Before my BMX, I had an breast MRI to see if BC existed in my left breast. Other than that, I haven't had any other diagnostic tests. Is that unusual?
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Baldeagle usually as part of your original work up a bone scan and Ct/PET are given to make sure that it hasn't spread to other parts of your body. If I were you I would be having a very long conversation with my doc about this.
Love n hugs. Chrissy.0 -
Baldeagle - yes, it's very unusual not to have scans to see if the cancer has spread. As far as I know, it's considered standard of care. I would be very concerned if I were you that your onc didn't do this. I had a bone scan and CT scans before I began tx, then again when I finished tx. If I were you, I would run, not walk to another oncologist. At the very least, you should get a second opinion. Good luck!
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mmizerak, don't be shy to get another opinion. This is too important to let loyalty to your onc prevent you from seeing someone else. You need an answer for your symptoms. Search until you find it.
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