If you are not Stage IV but have questions, you may post here
Comments
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Dear Lynda!!! Good thoughts and prayers are coming your way for a great report. I am also Stage 2b, so I know how every test or scan can cause anxiety. It does get easier, but I know that our docs take extra precautions with everything because of our cancer diagnosis!!! Thanks to Chrissy, we can come here for good advice and info. Take care and hugs to you!!! Kathy
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Lynda: I totally understand. I too just want to stay a Stage IIIA for awhile. It does help me some reminding myself that every little thing will be scrutinized now, but I still can't help but worry. I go to the MO at 1:45 today to get started on Tamox and get scan scheduled (hopefully for tomorrow). No sleep last night.
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I called my MO tonight after office hours. I have been having pain in my back ribs for over a week that get worse at night. He asked me if I had anything for the pain and I told him I had some Percocet leftover from my exchange surgery in March. He told me to take one tonight and told me he would review my chart and have the office call me in the morning. I told him I had my 3 month appointment with him next Thursday and if I could wait to see him then. He said yes, but he may want to order some scans. Someone needs to talk me off the ledge here. What kind of scans are ordered to see if you have bone mets? I'm very scared.
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Gracie, take a deep breath and try to relax a little. Yes I know, hard to do when you're hanging by your fingertips but please give it a try.
The scans that may be ordered could be PET/CT and or Bone scan neither of which are big deals but will show anything that may be there.
If there should be bone mets just remember that bone mets are the easiest to control and you will still have many more years ahead of you. It is possible that the pain you are feeling can also be inflamation.
Hoping your pain is just the inflamation.
Love n hugs. Chrissy0 -
chrissy - I want you to know how much I appreciate your calming words. I'm sure you have your own stressors and worries to contend with every day. Thank you for being you.
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I want to second that Kathy and Lisa...
Thank you Chrissy for being there for each of us!!
I am happy to say that my scans came back clear. I have benign hemangiomas. Nothing to worry about. I get to remain a stage IIB. Today, my MO and his PA both said they were not concerned as they have never seen mets in somebody who had just completed very successful chemo treatment [my tumor is no longer visible on scans]. Of course, I was not told this when the nurse called to schedule the MRI of my spine. Grrr. Don't they know what this does to us?
They think the elevated liver enzymes may have been caused by augmentin I took for two weeks starting on 9/1 [for infection after my final chemo]. The numbers were better this week. I see an anesthesiologist on Monday to see if they want to make adjustments given the liver enzymes. I am now waiting to reschedule surgery.
It is a good day.
Hoing you are all having good days as well!!
Lynda
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Lynda that is such good news!! I'm really pleased that you can stay at IIb and not have to join us in the stage IV forum.
Love n hugs. Chrissy0 -
Good news, Lynda!!!!
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Hello,
I am newly diagonsed and have seen people who have stage IV who have had a tumor less than 1 mm or cm which ever it is? No lymph node involment. I am a little confused as to how this could happen? As I read anything is possible with breast cancer. All different kinds of things happening. I just am not understanding the stage. I thought anything less than 1 mm no lymph node is stage 1? As I was diagonised this way. Help me to understand please.
Thank you,
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Hi Rose understanding all the ins and outs of BC can be pretty confusing, least of is understanding the way in which BC spreads to become stage IV or metastatic BC. This means that the BC has travelled outside the bounds of the breast and has grown in the bones, lungs, liver or brain.
Even if the original tumor was less than 1cm and had no lymph involvement it is still possible for for there to have been lymphovascular involvement which means that the BC has travelled through blood stream.
If this is marked on your pathology report it would have been noticed and your treatment would have reflected it. Usually the chemo given will clean up those stray cells.
Unfortunately, for some unknown reason after doing all the right things, stage IV can still happen. Breast Cancer is such an anomaly.
I hope this has helped a little but if you have further questions please feel fee to ask.
Love n hugs. Chrissy0 -
Thank you for the breakdown,Chrissy. I really did not understand. That is really sad to have such a small tumor but still get stage IV. This whole BC thing is just a mess for everyone. So many different scenario's. I never seen so many. It just get so overwhelmed sometimes reading on here. Everyone has a story. I have learned so much on here. It is a wonderful place to come to get updated and knowdlege. Thank you for the answer. I understand now.
God bless,
Rose
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i have a question about skin mets,how do they present themselves in the beginning? i have a spot about 3" below my cancer breast. it is red about the size of a pencil eraser,pearly appearance on top,unless i mess with it then it opens,stuff comes out sometimes and it opens up. have had it since late aug,have tried antibiotic cream,cream from radiation still here. today i noticed next to it a bump the size of a piece of rice under the skin. this evening instead of looking white,it is looking red and raised like the other one. i am not diabetic,have no other healing issues! also i feel like i am starving and eating like a horse,luckily no weight gain from it but i don't know why LOL!! Appreciate any advice/suggestions,i have my 2nd 3 mo check-up on oct 10! she does no bloodwork or scans unless there are symptoms!
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Belleeast, I can't diagnose your problem but I definitely think you should get it looked at. Hoping it's not serious.
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Belleast, I had a small nodule that came up at the end of my MX scar, it got larger over a month, so bs took it out, thinking it could be a little reaction to a suture or recurrence. It was recurrence. It never broke open, but it was about the size of a lentil. You should get the skin things checked with your surgeon.
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thank you,racy and linda for your replies. I will show it to my medical onocologist when i see her on the 10th. i don't see my surgeon anymore since the follow-up to my lumpectomy.
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QUESTION re: Mother's Stage IV Bone Metastases - broken ribs, crushed sternum
Hello. I am writing for my mom, who is 76, and has been in the hospital now for about three weeks. Bone test showed cancer in her spine, she went in for pain and had surgery to put balloon in her spine, that went good but then she also had five broken ribs and now she has a crushed sternum! They haven't done radiation for the pain yet because the hospital has been poorly organized, poor care too. But good grief, will her bones heal? She's on Faslodex, only had one shot. She can't get relief from morphine pump, having trouble breathing due to ribs, sternum, morphine. How much can a body take? She hasn't had bone scan because she can't lie down, so not known how much cancer has spread through bones. Thank you for any info. Can get any from her doctors and they're all so unavailable too.0 -
Hi Daughter so sorry to hear about your mom. You don't say where you are from but if you are not happy with the hospital is there any chance of getting her transferred to another facility? If she has not got good pain controll by now you need to see that she gets it either by bringing in a pain specialist or following the first suggestion.........there is no need for uncontrolled pain.
As for her bone mets I wish her well but it sounds like they are extensive. That's not to say that they can't be bought under control but they do need to find out how many and where.
I understand she is your mom and you love her dearly but you need to find out from your mom exactly what she wants in terms of treatment and then go from there. I will reiterate that her pain needs to be controlled ASAP.
Love n hugs. Chrissy0 -
Thank you for your reply, Chrissie. We are in Maryland & the next nearest hospital is not an option as she has had bad experiences there. She lives in an urban area but this is the best there is there, she's not a politician, just plain folk so as good as it gets. They are going to try the radiation for her on Monday offsite. I have been trying to find out who is in charge of pain but every time I call the hospital, everyone has a foreign accent from all over the place and I can't even understand them. I will find out who is in charge of pain for her but with the weekend, that just means chaos. I just hope she doesn't get another hospital bug. Medicare won't cover her to change hospitals anyway. She's been told her bones would never heal repeatedly and that they will heal as many times. She has been a bit of a difficult patient too giving them the idea she doesn't want treatment but that's just because she's in so much pain & can't think. She doesn't know that any treatment exists and hasn't been told in good enough English to understand.
So do you think her bones might be able to heal? At least she's had one dose of Faslodex so that's getting things under way to go in remission, as she has been told.
Thank you again for your reply. I really appreciate it.
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Daughter I'm really pleased to hear that they are going to give her some radiation treatment as that should help with the pain as well as kill off some of the active cancer. The Faslodex she is being given is an acceptable treatment and given enough time and given that the Faslodex works well for her it's quite possible for her bones to heal.
As I said earlier its very important that her pain is controlled as that will make her life tolerable.
Love n hugs. Chrissy0 -
Daugher, you may also request (demand) a palliative care consultation. This is diferent from hospice, which deals with end-of-life, but palliative care deals with symptom management at any stage of a life-changing or life-threatening illness. If you are in a metropolitan area, there are most likely palliative care specialists available. I believe some of the new guidelines on cancer suggest this is an important FIRST consulation for ANYONE with cancer.
If you cannot get your mother's doctors to help, you can also ask for an ethics consultation. Nurses are great at helping with this stuff - they are usually great patient advocates. An ethics consultation means the doctors have to sit down and talk with the patient and family to find the best way to treat an indivicual patient based on the patient's values - in this case, pain management! - I have found this is one way to get the docs' attention as a last restort if they won't help get a palliative care specialist on board pronto! I used to work on a clinical medical ethics team, and almost always it was called because the providers were not communicating well with the family, often because they themselves felt uncomfortable with their own inabilities to magically make everything better for the patient, so they just "avoided" it. It was easier for them, but not for the patient or family.
Best wishes to you and your mother - praying for relief from suffering for both of you. I hope this is helpful.0 -
Linda~ that's great information! Thanks for sharing
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Hi daughter
Your mum may find that she is able to have a ct scan if she uses her morphine but asks the doctor to add in some Ativan or lorazepam (similar to Valium but much quicker to wear off). Sometimes just feeling calmer can help
Tillycat0 -
Hi all, a few days ago my twin sister was dx with stage vi breast cancer, and naturally we are both beside ourselvesm,, filled with a whole aray of emotions angry, sad etc.
I have found myself worrying and have been extremely anxious, wondering sometimes outloud what will happen to her 3 young kids, who are 6, 3, 2. I slipped up yesterday and said "in the future I hope their father shares your kids with me, their my family. My sister snapped at me yesterday and said"don't count me out yet, I'm still here".. I felt terrible. ( I certainly was not trying to ..but I am concerned for her three children's future, .. I'm scared of seeing her suffer with the chemo , and this has been such a nightmare. Trying to keep a brave face has been difficult.
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Hi Imyna so sorry to hear about your sister. Being stage IV does not mean that we are going to die tomorrow or any time soon and quite frankly we are aware that we are facing our own mortality and don't need nor want to be reminded of it.
Most doctors now treat stage IV as a chronic illness and as such we can live a good life for many years.
We do however need our nearest and dearest there to support us on the days that aren't so good and yes there may be a few of them. Above all we don't want others bringing up concerns that we are already pondering on but wait until we bring those touchy subjects ourselves.
I don't mean to be sharp with you but I understand where you are coming from please understand where your sister stands.
Feel free to ask any question, you will always get an answer.
Love n hugs. Chrissy0 -
My Oncologist said that anyone who has had a local recurrence has around a 40% chance of getting BC again (www.breast-cancer.ca/survival-...). I try not to get hung up on that number as I understand that I will either get BC again or not. I am wondering....those of you that have mets....did you have local recurrence also? And if so, how long after your local recurrence did you get mets? I must admit that I am afraid. I am taking anti-depressants and they help but I am still afraid.
If this pertains to you, could you answer the questions without lecturing me on my fear, please?
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Hi wrsmith no lectures here just understanding. No matter who you are fear of hearing the words that BC is back is truly terrible ((((((hugs)))))). I never had a recurrence I just went from original dx to stage IV but it did take five years.
Not much help on your question so I hope others will stop by.
Love n hugs. Chrissy0 -
Wrsmith, I had local recurrence a year ago and again this year. But scans are all clear other than a questionable something that showed up on PET but not MRI, so mo still calling me stage 3. I have had no symptoms. So I just had another wide excision that the bs thinks may still provide "a cure" - I sure hope so. I am not looking at statistics, just my own internal voice, and I am optimistic for the first time in 2 years. I have lived with fear for 2 years, since first diagnosis. Maybe all the work I have been doing on mindfulness-based stress reduction has helped a little finally. Also an occasional xanax and taking time off from work to heal. Wishing the very best for you. May you be at peace.
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linda - what is mindfulness-based stress reduction? It sounds like somthing I could use. I take xanax at night to quiet my mind...is it addictive?
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I'm not sure if there is an answer to this question elsewhere, but I'd like to know how folks find their bone mets. I've always been a bit of a hypochondriac, but that didn't seem to prevent me from getting cancer in the first place, so I'm not counting on it to protect me from mets. I know at my stage, mets are unlikely, but it seems weird that the staging is almost entirely based on lymph node evaluation (and the thinking is somewhat circular ie I'm unlikely to get mets because I don't have mets and we haven't found mets cuz we haven't really looked). I know from elsewhere that oncologists seem to agree that there is no real benefit to finding mets early and therefore they don't do pet scans, bone scans etc. or even recommend CA27-29 (I insisted--mine was 30). However, obviously this information has not alleviated my (probably irrational) anxiety. I have minimally tender spots over ribs in two places (yes, I palpate obsessively) and I now have a sore spot on my scapula (sometimes I can't find it though, harder to palpate back there). I also have constant elbow pain which for whatever reason doesn't seem as concerning to me (weird location possibly related to how I use my mouse?). Of course all of my 'symptoms' are on the side of my cancer. My oncologist wants to 'start with x-rays and go from there' which won't really alleviate my anxiety since I know how insensitive xrays are. My question is...what REAL symptoms am I waiting for? Will I find lumps, thickenings over bones or will the pain be more obvious and constant? A fracture? Maybe there's a hypochondriac-anxious personality thread I should join!
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Hi There,
I'm not sure I'm going to be reassuring exactly but I will tell you mine were found by Ct scan followed by MRI, bone scan and bone biosopy. So took a bit of finding. Had one met in my lower spine. BUT I had node involvement of 9 out of the 13 they took so you can see that it was much more likely that at some point they would find something. I had no pain for that met but some people do. A couple of years later when I got mets in my right hip, yes they hurt, a constant dragging pain. But they also found them in my left hip at the same time and no pain in that hip, go figure.
I think, with my very limited knowledge, that with your dx it is pretty unlikely what you describe would be mets but scans would be the most conculsive way of finding them. Xrays are a good place to start so doc isn't wrong.
Anxiety is very normal at this time and as things settle down you will relax. One of the other things docs say is if the pain is still there or increasing after 3 weeks then look at it. Gives normal aches and pains a chance to settle and we can stop holding our breaths.
Elbows are generally not a place mets go but ribs can be, usually would still hurt whether you touched them or not.
Hope this helps, sort of rambling but that is what I have found with mine. Getting reassureance can help you know what is "normal" or not, so if nothing else helps push for the scans even if it is just once so you can see that everything is clear.
All the best.
Moira
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