If you are not Stage IV but have questions, you may post here
Comments
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Paula, I'm so sorry that you have to go through the whole process with the MRI again but it is the best way for the radiologist to tell just what is going on........hopefully just your bursitis doing its thing and nothing more sinister.
I do understand that all testing can be a little disconcerting but it is best to know exactly what is going on prior to moving on to the next phase of your treatment.
Love n hugs. Chrissy0 -
I've just read through this thread and it's really interesting. chrissie you are amazing for everyone here.
I have had pain in my left rib, under, ie closer to the ground when standing, where my left breast is / was. It's under my bra but seems to be worse from a tighter bra.
It arrived about a month after my lumpectomy, before Christmas. I went to my gp and she ordered an ultrasound of my organs, which was all good. I mentioned it to my MO and he had a prod around and said he thought it was muscular skeletal. It seems to be symmetrical but much worse on my left side, I can only feel it on my right if I poke at it.
Since my mastectomy with recon a few weeks ago, it has stuck around longer than any other pain and it is much worse than before. I mentioned it to the surgeon and he said hmmm it shouldn't hurt down there we didn't do anything there, but it could be gravity...
Anyway, I've finally decided that I'm going to ask for a scan to find out what it isn't! I want to stop thinking about cancer and to get on with my life without this fear. I feel like if I can get the peace of mind that it isn't mets it will be much easier for me to move on from this horrible episode.
I'm due to see the MO in a month so whatever it is can wait till then, or should i discuss it when i see the aurgeon this week for a fill? I'm shit scared but I think I won't tell my family. I mentioned it to DH and he said it was way too soon after dx for mets to show up, especially since I only had a micro met. That made me feel better for a few days.
Xx kk0 -
Kiwi, have you tried an over the counter painkiller that works on inflammatory pain (not sure which one)? You could try that and see if you get relief.
I agree you should report the pain to your GP or oncologist.
But I hope it's nothing serious as your cancer was very early stage and low grade.0 -
Kiwi as always, unusual pain should be reported but I think you will find that pain is as your surgeon said, muscular skeletal. Racy hit the nail right on the head when she suggested an anti inflammatory and that would also be my suggestion. Ibuprophen is also an anti inflammatory but if you don't want to go that way, try either some Curcumin and or Boswellia both of which are natural and work wonders. The only thing with them is that they may take a week or two to feel the benefit.
Hoping all goes well but still if you are concerned, ask for a CT to rule out anything else.
Love n hugs. Chrissy0 -
I really need some advice from you stage 4 ladies. I'm finishing up my own stage 1 targeted therapy but my mother has just gotten confirmation that she is stage 4. There was no diagnosis before this so she went from nothing to stage 4 in one giant step. I can see her going through the OMG what now phases I went through, but she's stage 4, not 1. No matter how much I've imagined getting the same message, it can't be the same hearing it.
I've been using my own experience to talk her through all the testing that has been done (biopsies, MRI, PET) and to futilely try to convince her that there really are good anti-nauseant and anti-emetic drugs out there (Mom! I didn't throw up once during chemo). But, at 81 she is either unable or unwilling to comprehend what needs to happen and what will probably happen. I'm going with her and Pop tomorrow for the first visit with the oncologist. I'm the note-taker and I'll make damn sure he uses the same "comfort" drugs that my own oncologist used.
Here are the questions:
- She's so concerned about being a "burden" that I'm concerned that she'll refuse or neglect treatment. I need to respect her wishes, but at what point do I (and my sibs) step in and tell Mom what she will do or not do and at what point do we say ok, it's your life, it's your decision? Where do we draw the line with Pop still in the picture and in remarkable health. It's more their business than ours but he may not know what she's up to (see next point).
- My folks' relationship is very traditional with Mom the gate-keeper for communications between the world and the two of them. I know they'd do anything for each other, but how do I get Pop to step up and reassure her that taking her to doc appointments and such is not a burden if she won't even let him know what she's keeping from him. She's the one who decided that driving 30 minutes to a respectable clinic for a 2nd opinion was too much trouble for Pop (he never knew about my demand that she seek a 2nd opinion). We are convinced that the 6+ month delay resulted in the stage 4 situation. (The closest any of us live to them is 2.5 hours drive away.)
- Mom is not a hugger and has spent 81 years practicing being emtionally distant. She's very good at it. I can't just give her a hug and let her seek some temporary release. What can I say/do that would be of any emotional help?
- She's more worried about Pop than herself (see point 2). Am I playing dirty if I use that to get her to do things like go to pilates to stay active by telling her she'll be more of a burden to Pop by dying early than by staying alive longer?
Sorry about the incoherent ranting, but that's pretty much the sum of how I'm reacting to all this: incoherently.
Thank you in advance.
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Lynn, I'm so sorry. No family should have to deal with this crap, but to have it hit multiple family members at once..ugh.
Treatment for stage IV is not the same as it is for lower stages. Being that your mom is 81, I can't say for sure, but if she is ER+, I think hormonals would be used before chemo. They normally try the easier things before the harsh ones. At lower stages, they nuke it and try to remove it all. At stage IV, depending on how much it has spread, the option of removing it all is past. They try to "contain" it, for lack of a better word. She may not ever get chemo if they can find a hormonal that works well for her. Radiation is also used differently on stage IVs. So the normal surgery, chemo, radiation thing probably won't apply to her.
As for as your questions..
"but at what point do I (and my sibs) step in and tell Mom what she will do or not do and at what point do we say ok, it's your life, it's your decision?"
From this point right here and now you say it is her life, and her decision. Because it is. You can not "tell her what she will do or not do" at any point. You can recommend, you can share your experience, you can try to convince, but you can not force her to do anything. Unless she is incompetent and you are willing to go to court and prove that to get guardianship of her.
For Mom and Pop's relationship, that is theirs to deal with as they will. If your mom doesn't want dad to know something, I feel that is her right.
As a very private person myself and one who hates hugging, I think I would like your mom.
What I choose to do, because it is easier for me, and easier on my family, is to deal with all this crap myself. Let her know you are there for her, I'm sure she already knows this. Don't try to force your way in, let her deal with it how she needs to. Don't take it personally, but let your mom do it her way, whether you like it or not.I actually had to have a fit before I could get my mom to stop trying to force her way in. She insisted on going to my appointments with me. I tried to decline politely, that didn't work. I finally had to just bluntly tell her that I would rather go alone and she was not going with me. I like to have the time after my appointment to absorb what the Dr. said and if necessary, have a breakdown, alone, in my car, where I feel comfortable. This is not something I could do in front of anyone, ever. When I'm ready, I'll tell what I choose to tell to who I choose to tell.
Ultimatly, all you can do is let her know you are there whenever she needs you and be there when she does need you.
Just my two cents.
Best wishes and good thoughts to both of you.
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Hi Lynn,
Damn and double damn. I was stage 4 from the get go and my mum was dx 3 years after me with stage 1. Funny old world.
Stormynyte is right I think.
You are asking very caring questions and it is obvious how much you want to help. The thing is your parents have a long established relationship and it works for them. How far do you go in pushing into that relationship "for their own good". Truly I don't know. You want to help and as a by stander you can see how things could work better but is it right to do? I have no answer to that but feel you need to consider their wishes and way of interacting together too.
Your pop being at the appt may help.You might be able to slide questions in that you think he should hear the answers to.
Treatments are different for those in their older years. My mum was 81 when dx. It made me cry to think she would have to go through what I had gone. She had a mx and since she was stage 1 they decided no hormonal either. No rads either. We are in NZ and they believe in quality of life rather than quantity of life here so they are less aggressive in treating,and doing things they think will do little to prolong life and be too hard for older bodies to cope with. My mum is 86 now and doing fine with no recurrnace.
You have to weight up those two things very much when dealing with someone who is already in their 80s.Plus your mum wishes for treatment. What you want for her and what she wants for herself.
I don't think there is any easy answer and these questions wil come up time and again as you all try to work your way through this.
My mum is no hugger either but I just rang her and kept in touch(we didn't live nearby) If she wants to talk let her but she may be private about what she tells you. Plus if you push too hard will she stop telling you anything? She is an adult and can make those decisions for herself even if you don't agree.
This is tough and I can see how this could be very painful for the whole family. One thing to remember. This is her journey not yours. You have to respect that.
Please come again and ask questions and air concerns. It is obvious you want the very best for your mum.
Moira
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Hi Lynn, I'm so sorry that both you and your mom are dealing with BC at the same time.
I have to say that I agree with Stormy when she says that the point to step back and let your mom make her own decisions on this matter is right now. I know that's not what you want to hear but the bottom line is that it is her life to do with as she pleases and make decisions that concern her life herself with no interference. Should she come to you and ask a question or your advice by all mean giver her your point of view but she must be allowed to make the final decision as to how she will treat her cancer.
From a moms point of view, we don't like being a burden on anyone, we always try to do things for ourselves and if that is not possible then we usually forego what ever it was. In this, you can tell her, show her that no matter what she will never be a burden and you are happy to do what ever you can to make what will,be the rest of her life as good as possible. As for what your mom tells your dad, well, I'm presuming that they have been together many years and will have by now, figured out their own ways of communicating just what is going on.
Treatment for stage IV is very different to the earlier stages in that treatment no longer looks for the "cure" but tries to control and contain the cancer for as long as possible with as good a quality of life as is possible. To do this, for ER+ the docs start with the gentlest treatment and leave what they call the big guns till later.
I understand your fear for you mom as I have two daughters who fear for me but from my point of view, I prefer it when we can just be ourselves and live life making what memories we can. Oh yes, they always want to know what the docs say when I have an appointment but they also know that I would hate it if they insisted on coming with me for those appointments.
Your mom is much older than I and so after consolting with her doc may choose no treatment at all. Should this be the case, please respect her decision as hard as that may be.
Love n hugs. Chrissy0 -
I have been having lower pelvis pain for sometime...3+ months - it's a dull pain and i don't feel it all the time, mostly when I am bending down (picking up all the freaking kids toys). Does bone mets present itself only in certain situations (like bending over) or is it a dull/ongoing pain no matter what you are doing or both?
My MO has brushed it off and wanted to wait until I was a month out from chemo to schedule any scans (he's anti scan). I see him on Tuesday, then have to wait for the order to be approved. I had a bone scan in November that was clear.
Thoughts?
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Hi Lynn, how difficult for you and your family!
First of all, the six month delay was unlikely to alter the diagnosis. Don't beat yourself or your mother up over it.
Second of all, if she's estrogen receptor positive they would not start with chemo. It depends on what the scan shows. She may never need to have chemo. See what the oncologist says at the appointment.
Thirdly, Moira and Stormy are right. You cannot force your mother to do anything, including treatment or no. It is up to her. Or her and your pop. (My spouse will definitely have some say as we go along though of course the final decision is mine) You said that he was coming with you all to the appointment, so he will hear and have some say as well. All you should do it support their decision.
But that said, you can try to convince her. I can think of at least one approach -- you can appeal to her not leaving your father without at least trying treatment. You can also promise her she can refuse treatment at any time in the future.
Once the results of the scans are in and she has spoken with the oncologist matters may be clearer to all of you.
I wish you the very best.
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Hi Jenjeni bone pain can be ache but usually when you are talking bone mets pain, it is usually a pain that won't quit, not come and go.
Are you still doing chemo? I'm assuming you are so it would be most unusual for mets to have developed although not impossible. I would go with what your doc is saying and wait for that month after treatment..........I'm sure it's not just because he's anti scan, as scans in themselves can be dangerous to the cells and cause damage so using them frugally is a good thing.
I know once you have been diagnosed with cancer every pain we feel becomes a met and it is no different for those of us who have mets.........it's called being human and having a desire to survive.
Love n hugs. Chrissy0 -
Hi Chrissyb, I too have pain. It is in my hip and usually wakes me up in the morning, or when the Ativan wears off:)
I finished chemo march 14th and have been nausous everyday since. My onc referred me to a GI and they are going to do an esophigal scope on the 21st. 2 weeks ago my tumor maker in my liver and pancreas were elevated. My question is, can the elevations make me feel so sick???
Thank you0 -
Michelle, I'm not sure if the elevations would make you nauseous but anything to do with pancreas and liver can.........like if either are not functioning well or the gall bladder which is in the base of the liver is not functioning well. If it were either of these things, there would also be other symptoms.
It's a good thing that you are going to see a gastenterologist to get the stomach checked as there are a lot of things that can cause nausea including systemic candida.
Please let us know how you get on.
Love n hugs. Chrissy0 -
Chrissy - I finished chemo April 2nd so it's been over a month. I trust my MO and he has said that if the pain is still there by 5/14 then he will talk about scans. I hope it's nothing especially since it's been a little over a month finishing TAC.
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Hello all,
I don't have BC myself but my mom had it almost 10 years ago and in Jan. 2013 they noticed that her blood calcium levels were a bit too high. After doing a bunch of scans they came to see that she has bone mets. They immediately started her on a bisphosphonate and they have her come back every month to check up on her, you know how it is. Thankfully (and you learn to be thankful when you are dealing with a horrible disease like cancer) it hasn't gotten into her vital organs!!! Anyways in April when she went to have her monthly consult with her doctor he said that her levels remained the same, which I suppose is better than going higher. The doctor told her that if her body doesn't respond then they will look for a more aggressive approach (chemo) My mother is incredibly strong and has so much faith/trust in her onc but since I'm the worry wart I tend to Google things and usually don't get the best results. Is bone mets something someone can deal with for a long time? She has a upcoming appt on Thursday so hoping for the best results.
Thanks for listening--I feel so alone sometimes.
Love and prayers for you all.
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Jenjeni it is possible for it to be a lingering effect from your chemo or a whole lot of others things but its good to get the scans done if it is concerning you and it obviously is. Like I said before, it's unlikely to be mets but not impossible. Good luck with your scans and do let me know how you get on.
Hi Sameentaj so sorry to hear that your mom is once again dealing with Breast cancer. You didn't say if she was ER+ or not which can make a huge did difference to her treatment. Is she having anything other than a bisphosphinate? Bone mets are probably the best sort of mets if you have to have mets as they can usually be controlled well for a long time. There are many women living long and productive lives with bone mets only but the key to that is a good response to treatment. I'm sure once your mom is given a treatment she responds well to she will be able to be with you for quite a while.
Oh, by the way, just about everything you read on the web is way out of date so their statistics are not reliable.
Love n hugs. Chrissy0 -
Thank you, ladies. This is why I like the BCO site. Good advice although some of it was hard to hear. I do not regret pushing Mom hard to get the final round of biopsies and scans done and to request the oncotyping (still waiting for results). She didn't understand what kind of information those would provide the oncologist. But from this point forward, the docs have or shortly will have what they need.
You're right: for me, my stage and my age, my decision tree is necessarily different from Moms. My job is to make sure Mom understands what the docs are proposing, SEs, different prognoses, etc. so that she can apply her own decision tree as fully informed as possible. The only "forcing" I'm going to do is to make sure she takes any anti-emetic, etc. comfort drugs that are prescribed so she is as comfortable as possible. Here's hoping for a triple positive typing.
Thanks again, C-Squared, for the recommendation to get them a recorder for the doctor meetings. That will be very useful.
I just noted the qualifier for this forum. I'll move over to the care-giver forum. It's more appropriate for me to post there. Thank you everyone.
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My question is for all you stage IV ladies out there. I am...sorry I 'had' a stage 2a breast cancer that was removed 6 weeks ago. My oncotype dx test came back a 22. My mother died at my age from stage IV breast cancer. It ended in her bones back in the 70's...tech back then was not so grand.
My question is ...is there anyone out there that declined all treatment after having a bilateral mastectomy with clear margins and no sentinal node involvement only to have it come back and end up stage IV?
I'm trying to assess whether my MO is thinking straight when he suggested I have my ovaries out to push me into menopause so he can give me drugs that, through reading on the net, make a lot of ladies quite ill from the side effects. And, if I happen to be following in my mother's foot steps, wouldn't removing my ovaries open up my bones to possible cancer migration?
Any thoughts on the subject would be wonderful. My family won't have this discussion with me, they are all too sensitive and tell me not to think about it and to just concentrate on healing from the surgery.
(thought I'd add that I'm BRAC1 and 2 negative, est and proges +, tumor was 2.2cm, margins 1cm clear)
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Babs, I don't know anyone who declined treatment after bilateral mastectomy. However, there are plenty of women who did have clean margins, clean nodes and followed treatment for several years only to have the beast return. Sorry to break it to you, but breast cancer is an insidious disease with a mind of its own. Also, I haven't heard anything related to removing ovaries and getting bone mets. Best of luck with your treatment.
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Babs, remember when reading about SE's on the net, people who had no issues with the meds don't normally report that. People who had every SE's in the book will report many times over. If I had read about some of the meds I took before I took them, I would have refused. But, I was one of the ones who didn't really have any bad Se's. It all depends on the person. Don't refuse a treatment based solely on others SE's.
As far as the ovaries and bone mets, my ovaries seem to work overtime and I still got bone mets. My onc was talking about removing my ovaries to help out the tamoxifen as the cancer is ER+, the less food I give it the better I think.
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Mum is having vivid dreams which at the time she confuses with reality - like when you are half asleep waking from a deep sleep and you can't work out what is real or what is going on.
Is this the effects of chemo? Or the brain met?! It's hard to work out what is what....maybe its all side effects of chemo. I guess I am scared of the disease progressing and hoping you will tell me it is chemo.
She felt nausea and scared I think.
Seems each day I have new questions
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Papillon don't worry about asking questions, that is what this thread is for. I've not heard that chemo would cause hallucination dreams but it is known that some of the steroids that are given to reduce SEs can cause them as well as some pain killers.
Love n hugs. Chrissy0 -
Think she is off the steroids just now. Don't think she hallucinates, just v confused when in the deep sleepy night. Like she is somewhere between dream and awake..maybe its being super tired, I can feel a similar thing when I have been up with my kids - I can wake in the night and it takes a while before I can work out whose bed I am in...perhaps its an extreme version of the same, caused by fatigue!? Who knows. Another rubbish experience for poor mum (and dad)
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Thank a lot Chrissy, you're great xx0 -
Papillon, you could be right, maybe it is the deep fatigue that is making her disoriented.
Love n hugs. Chrissy0 -
I do not have a question, just a rant.
Doesn't Angelina Jolie support a cause in a third world country? I know this sounds bad of me, but why? When so many people suffer in the US?!?!?
Well maybe I do have a question. I am just so scared.
Is this the new cure " cut them off"? Another false hope, it can come back in the tissue.
Sorry to be so negative.0 -
I think the action Angelina has taken is in hope to cut them off before the c starts, before the seeds are spread. I would..
It's no cure, no definite...just a reduction in chances. I would happily grab that with both hands.
The initial battle with a lump I could probably face, supported by family. but the dormant seeds that lie in wait years later are what terrify me as no doubt you all appreciate. My only concern with her publicity is that many who don't have access to free healthcare can't afford it.
If it had been an option 30 years ago maybe just maybe I wouldn't be facing losing my mum. Maybe a lot of lovely women on this forum would be off doing something else somewhere else.
Ifi can save my kids the devastation I feel at seeing my mum in stage 4, by me having an op now. I will.0 -
I talked to my mo today about getting the brac 1 and 2 test, because I have 2 daughters and if there is a chance that they could inherit the gene from me the sooner we know the better. If my insurance doesn't cover it it will cost 3500.00 which I will gladly pay so my kids don't have to go through this. I kinda admire Angelina for going public with her info, it helps to put it out there, on peoples mind, anyway we can get it out there the better as far as I'm concerned.
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If I had known I was BRCA1+ before I got cancer I would have done the same. But now I know I am BRCA1+ and got cancer. If I would have had a change to reduce my overall risk I would have done it. Now I am in damage control mode
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I am brac 2+ and had never heard of this test until after I was diagnosed with cancer.
I would have done the same thing as well. For some reason I do not think I am alone
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I applaud A. Jolie for her honesty and openness regarding her health. However, I also fear that many women who get the test and are NOT BRCA+ may get a sense of false hope and may put off mammos or further testing just because they are negative.
Being BRCA- does not mean one will not get BC. And that mammos, etc...are still necessary.
I have yet to hear that simple statement in the news reports regarding A. Jolie.
I am BRCA- and yet still stage IV from the get go.0
