If you are not Stage IV but have questions, you may post here
Comments
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Chrissyb, thanks for your info and encouragement. I truly appreciate all the support from all of you here - I think I was just "having a moment" this week - one of those panicky ones and I am much better today.
Psalm, I think once a doc has missed a diagnosis in one patient, they get very very careful to not miss it again - they DO learn from their mistakes, just like we all do, so maybe that is another reason your MO responded to you so quickly.
Caryn, so glad to see you again! And I appreciate your reminder to enjoy each day.
Momine & Robo - I am not candidate for ooph, but may check with MO to see about trying the lower dose. That might make her happier than me not taking anything at all - I have resisted the AIs because I have low bone mass and really don't want to deal with that.
Thanks all - sending you lovingkindness.0 -
I don't know if I'm stage four or not. I have been told that metastatic breast cancer is strongly suspected but since the biopsy was unsuccessful, there is no way to know for sure yet. I have three spots within close proximity of each other in my thorasic area; these are also in the same area of a compression fracture sustaine two years ago in a car accident. Has anyone been treated with Zometa and Exemastane? If so, do you mind to share your experience with it?
Anxious
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Hi Anxious sorry you are needing to be here. Exemestane ( Aromasin) is commonly used for ER+ BC. It is one of the Aromatase Inhibitors and the others are Arimidex and Femara. I on Femara and have been for twenty months with very good results.
The Zometa is a Bisphosphinate and is regularly used in conjunction with an Aromatase Inhibitor.
Take a deep breath, bone mets can be well controlled with the drugs that you have been prescribed.
Love n hugs. Chrissy0 -
Thanks, Chrissy! I haven't heard of Femera, but I have been on Arimidex for the past four years following my surgery. It is probably too early yet to tell if the new meds are working, but other than backache almost constantly and joint pain, I am doing quite well, for which I am very thankful. I realize it could be a lot worse. My heart goes out to others who are having to go through the experience of breast cancer. My sister-in-law, who is a couple years younger than I am, had it for many years before she passed away a couple years ago. She was a sweetheart and is very much missed; I hope I can be as strong as she was. I am determined to do whatever it takes to fight this thing.
Thanks for your encouragement. I wish you well also, and will remember you in my prayers.
Anxious
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I had a bone scan that had an uptake in the skull head CT said probably a vascular channel but could not rule out mets. I get shooting pains in the area of the uptake. Does anyone know if you experience pain with skull mets? Thanks.
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Psalm, you most likely said something that raised a red flag since they dont usually give scans just for reassurance. When you have symptoms that have lasted more than 2 weeks or symptoms that are severe then you also should be considered for scans. Many women have no symptoms at all and find out they have mets by accident. I wish they would give all cancer patients a scan at least once a year or 2 for reassurance. But it doesnt work that way. Hugs, Mazy
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Mazy ~ you're so right, I've been worried about seeming paranoid or obsessive & shouldn't be letting those doubts creep in. If I hadn't been so persistent about symptoms with my original diagnosis it's untelling how long it would have gone undetected. I had no lump & "normal" mammogram...my symptom was pain. You said you were "more tired than usual", do you mean always tired or that you became tired more easily. I just feel exhausted, even first thing in the morning. I háve to rest all throughout the day after any little exertion that 3 weeks ago was not even an issue. I had been exercising & doing great. Thank you for your guidance & understanding....
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Mazy ~ also meant to mention I've had this sensation of something crawling on my shin bone....nothing is of course but it feels really strange. Ever heard of this kind of symptom? !
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Hi 3girls I can't help you with your question as I have no experience with skull mets. I can however send you a big (((((((HUG))))))).
I'm sure someone else will step in soon.
Love n hugs. Chrissy
Psalm I have never heard of that as a symptom. That tickle feeling can happen anywhere on your body as it is usually caused by nerve endings firing just under the skin.
Hope this info helps a little.
Love n hugs. Chrissy0 -
Chrissy, I have to repeat what has already been said here quite a few times before.
I come to this thread day after day and see you putting your all into helping everyone you can. I just have to say you are amazing. You make this site a better place by spending your time here. I and I'm sure so many others appreciate you and everything you do for us.
Basically, I just wanted to say thank you for being you!
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When I was first DX'ed w BC I was really scared, anticipated the chemo and everything that goes with it, but I was ready to go for it. I had 4 bx, a bx to my nodes which was possitive. OH s&$t. I saw 3 BS, trying to find one who was conservative. The first one offered a MX w removal of all LN's(befor the LN bx) the second one said I needed neo chemo and a MX. She ordered the LN bx. I finally settled on a surgeon who felt he can remove the tumor and a small amount of LN. He did! got clear margins and 8 'negative' nodes???? I was thrilled w the final path report. I opted out of chemo (my health is poor due to MS, diabetes, and CFS) I felt the chemo would put me under another foot.
I had WB radiation w/o underarm rads due to the neg nodes and I was reluctant to try AI's. The fact that my nodes were clean dispite the possitive bx that concluded at least one was cancer weighed heavily on my mind. Where is it? and where did it go? I went back to the surgeon who found the Poss node looking for an answer. She did an US and lo and behold there it is. it had a clip in it so it was easy to ID. WTF. I'm scheduled for surgery in 3 weeks to remove more LN's.
Am I eligable for rads to the LN's after the fact? Can I have chemo 8 months after the PMX? Did the node left behind increase my recuranse score (oncotype is 28)and chance of METS? Is my only hope the AI's? Should I have a MX? Is my sched reduction on the "good" breast a waste. I'm feeling hopeless. My latest Mammo was clear and bone scan is normal. So far so good. But.........??? TOO MANY questions. Thanx for any input you can offer.
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Hi Chef, I can see why your head is just spinning with all the questions. I know dealing with MS and BC is a difficult thing as the meds for one raises your risks for the other. The person to talk to on that subject is another member here and her name is 3jays.........she also has MS and I know she can give you more information on dealing with both. I'm sure she will not mind if you PM her.
Having a MX at this point will not change things your main concern right now is that hot lymph node. Once you have the surgery, the best advise I can give you is to speak with both your surgeon and an oncologist as they will direct you to the best on going treatment should you need it. They may recommend that you do chemo but please, talk to the people who are trained.
Why would you feel that the reduction surgery that is sheduled be a waste? Will it make you feel better about yourself? I'm sure it will. You are not going to die anytime soon......unless you get hit by a bus...........so keep living and do what you need to do for yourself. Don't feel hopeless as there is always hope...............we sometimes cannot see where the road leads but it may not be as bumpy as we believe.
Love n hugs. Chrissy
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Chrissy, I'm with Stormy....thanks so much for your dedication & calming reassurances!
Chef~ (((hugs))) & know we're all thinking of you & praying for negative nodes0 -
Chrissy,
I second and third the gratitude others have expressed to you for starting this thread. I will happily answer questions about ports, frozen shoulder, one step implants, collapsed lung,accidental bone met discoveries, and living well with stage IV. It is frightening to hear at first and I did have a rough patch but things are mostly normal now. Caryn0 -
Well exbrnxgrl~now I'm curious! If you don't mind sharing, what is your "accidental bone mets discovery" experience? I appreciate your willingness to help those of us who are worried & doubting ourselves.
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If you believe everything happens for a reason, this is a good story to support that. I had a bmx with one step, ns/ss reconstruction. Final path report showed dcis too close to one nipple and 1 positive node. Scheduled surgery to have nipple removed and port installed simultaneously. During recovery mo wanted to enroll me in phase III clinical trial. This required echo cardiogram. Some fluid found around my heart so PET was ordered. PET discovers completely collapsed right lung thought to be as a result of tiny nick during port placement which caused a slow leak. Rushed to ER, hospitalized for 6 days. MO also notes PET found spot on upper femur. MRI done but inconclusive. After healing from lung issue, I had a bone biopsy. Bingo! 2 cm bone met. No pain, no symptoms. Soooo, if I had never had the echo which led to the PET the bone met might not have been found until it became symptomic and possibly more widespread. Not to mention the collapsed lung which presented with atypical symptoms. Things have gone much more smoothly since then. Last PET was clear and I went back to work in Jan. of this year. I'm a teacher so am currently enjoying summer vacation, but am looking forward to a new school year in late August. Caryn
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Wow Caryn!! What an experience! I do believe everything happens for a reason & you are an amazing example of that! You are a remarkable testimony to how fragile our lives/futures are & the impact of our decisions.
Here's to a wonderful California summer vaca!
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Chrissy, YOU are an invaluable part of BCO. your answers give me comfort. I need to chill. I am just so angry that a known poss node was left behind and my TX decision would have been different. Radiation to LN is no longer an option. Chemo?? I don't think that 8 months post surgery qualifies me for that. I see my MO next month and the MRI will tell me more on that LN. If I didn't ask about the LN it would have stayed there to spread and it may have already.
exbrnxgl, Wow. That is a real story of fate and good karma. It seems you are living a good life and its good to hear the bone mets do not stand in your way. Enjoy your summer.
Maureen
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Caryn - Great to hear how you're doing. Have a wonderful summer - and let me know if you head out this way.
My cough is still lingering, but I've heard that's the seasonal 'thing' to catch this year. I do have an odd feeling on my left side - before my exchange, I assumed it was from the horrendous coughing I was doing. Now that my coughs are much under control, I'm keeping an eye on it. Feels a little like gas, but always in the same spot, and aches if I cough breath in really deep or in some way contract or expand the muscle. Hoping for now it's just a lingering strained muscle.
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I just wanted to add something to ProudMom's discussion. I have a lovely husband whom I adore, but he cannot communicate worth a darn. Half the time he can't remember what I've told him to say, or he says it wrong, or totally downplays the whole situation. So he's been banned from the answering machine and I almost always follow up on his messages. I don't think it's completely his fault, he does have dyslexia. You know the old joke, where the husband takes the message from the dr:
Note on the fridge: Someone from the gyna colleges called. They said the Pabst Beer is normal. I didn't even know you liked beer.
FWIW
amy
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Amy,
That was funny! I'd never heard that before. Sometimes I miss having a spouse (but not the one I had ).My adult daughters are my main support in the bc battle and they think and act like women. Makes it a lot easier.
Caryn
PS: kudos to my SIL and future SIL. They help with household repairs and stuff that men like to do.0 -
Chef, you have every reason to be angry. How on earth did they not remove that node?
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Amy... I loved that. Hadn't heard it but my keyboard might not forgive you any time soon. Darn OJ had to be cleaned up. LOL
I also have a lovely husband whom I adore... Who will grab the one positive thing that took them under 10 seconds to say and hold it close through the next 10 minutes of crud and have missed all of it... To look on the brightside and then get stuck on it for weeks downplaying things. *sigh* But he's cute, cooks, and does laundry so he's a keeper.
Shell
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OK so I find myself very involved with the organization of the one yearly breast cancer walk near my country home.
I really want MBC women to feel included, not ignored.
One suggestion I considered was having a special team, but I don't know where the line is between recognition and feeling segregated.
Any other ideas?
Since I seem to have a pretty good seat at the table here, I might be actually able to make something happen.
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Cookie I have no idea where you would start on that but I do wish you well in getting something organised. It is about time that stage IV really got some attention.
Good luck!
Love n hugs. Chrissy
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Chrissy.. i just want to say that this thread has proven to be a godsend.. it keeps all the silly questions out of out serious stage 4 forum.. anyone can offer advice. I can imagine that this questions could be expanded to be it's own pre-four possible forum... A forum for encouragement without all the fear and dire issues we (4ers) must deal with... "where do i belong, where do i fit in?" There are some diverse answers that would be easier to find in the search function if they had titles.
it's really a good idea... this thread. It solved a host of issues immediately.
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Cookiegal - Thanks for wanting to include mbc women (and men) in your walk. I take part in the Relay for Life in my community. Our team name was kept the same as always, but this year we decorated our site with the colors of mbc and I was able to get some t-shirts from MBCN.org (they were free). I also had some information pamphlets that I obtained from metavivor.org
I don't think that you would be segregating anyone. Awareness and education of mbc is so important. I encourage you to go forward with your idea. PM me if you like - I am also hoping to do a small fundraiser on Oct 13 - mbc awareness day.
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Hello everyone,
I wanted to let you guys know about some of my scans. CT's were ok, bone density showed osteopenia. I had my bone scan today, a little concerned. I peeked at the photos while it was being done. My whole pelvic area was lit up like a white Christmas tree!! I was pretty ill the last time I had one so I don't remember how it looked then. My doctors appointment is on Monday and I will get my CA-125 results then, but it seems like I am heading down that long hard road again. Any thoughts? What else could make the pictures so bright!!!!! Un@&#%ingbelievable!
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srbl62 ~ I had a bone scan today too & had several bright spots....arm, hips. Can't get those images out of my mind & I'm worried too, very. Hold hands tight....here we go....
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Lots of things light up bone scans - arthritis, old broken/healing bones, unknown past bone injuries, inflammation from infection, radiaton damage, etc.
Your ostopenia could be lighting up the scans. Or even your joint pain from your AI.
I hope that both of you find out it is something that simple.0
