If you are not Stage IV but have questions, you may post here

TWillis, this is what happens when non-medical writers write about mbc. They just do not understand it. Mindy Cohn, from what I can gather, may be NED or NEAD at the moment -- the most accurate term for "in remission" -- which means cancer is not detectable at the moment on imaging. This is not uncommon, especially if it was in a very limited area. However, once someone has had mbc, with the exception of perhaps 1 to 2% of us (as counted by conventional research; there may be more cases not counted), no one is ever truly cancer free -- as in totally over it. Sadly there are most likely still mbc cells in her body, most likely hibernating or sleeping or hiding out until something sparks their proliferation again.

Hope this makes sense. And your question is an excellent one, much discussed on FB today. Hugs, Deanna

Hi, This is my first post. I found out my mom was diagnosed with Stage IV a few months ago. It has been really difficult. The chemo she is on now makes her pretty sick for like a week after treatment. She doesn't like to share a lot of information, and I try to respect what she wants to share, and to be there for her in any way I can, including listening to her and talking to her when she is struggling with her down days and being excited for her when she has her good days. I hope this question doesn't come across as selfish, because what I'm wondering is if it's still ok to talk to my mom about my problems. She was always my person, we talked every day and she gave me advice and supported me through everything in my life. Since being diagnosed, we talk less because she doesn't feel well. I live far away from her. I had some relationship stuff happen and I really want to talk to her about it now, but I don't want to burden her with my problems when she is going through so much. Basically, I guess my question is, is it still ok to talk to my mom about what's going on with me, or is it too much of a burden with everything she is going through with her cancer?

TWills..... I agree with dlb823. I go as far as not reading articles or watching documentaries by non medical writers. All they do is confuse the public and dlb is right. Oncologists say that BC, once metastasised is not curable. It is treatable. I was told there will be no such thing as what is usually termed as remission for me but, hopefully, we can bring the extensive bone mets I have under control. If this writer's cancer had metastasised and was still spreading, I'm pleased that she believes she is cancer free but I agree with dlb on that score as well. Sadly, she would be NED which doesn't mean remission or cured.

saranoh...what a special daughter you are. No, it's not selfish to still want to talk to your mother. It's very thoughtful of you to seek opinions on it before you do and I admire you for that. Of course, it does depend on the sort of person your mother is and how she's coping with her diagnosis. At the moment she would still be in shock and disbelief. I wrote about this on another thread. I'll see if I can find it for you and re-post it here. If I don't re-post it, it will be because I can't find it. Basically, what I found was that, with a Stage IV diagnosis, you go through a similar process to that which you go through with grief: shock, disbelief, denial, anger and not necessarily in that order. You might be in more than one state at the same time as another. It takes a long, long time to get to the acceptance stage so you will need to understand that that's what your Mum (I'm an Aussie, I say Mum) is going through right now. That's just some background for you because she will seem distracted at times, partly or mainly due to feeling ill but also just the disbelief that this has happened.

I have a 29 year old son and we're very close. He's always come to me for advice and he's my best friend so likewise I confide in him. I have been very ill for the past year. I was diagnosed Stage IV with bone mets a year ago but despite that we still talk about his problems because it's very important to me that I'm still his Mum and I intend to be there for him as long as there's breath in my body. I'd hate for him to feel he's burdening me if he talks to me about his problems. I encourage it and in that way nothing has changed. In fact, I find it takes me out of myself to have him talk to me. I don't want anyone to see me as being "different" now and I still encourage all my friends to confide in me the way they always have done; otherwise I would feel isolated and unwanted and I'd hate that. I would feel as though I'd been cast off and redundant and I'm far from that. In fact, having cancer has given me a wisdom that is beyond any I had before (says she, modestly haha). Perhaps you could broach this subject with your Mum. Tell her what you said here; that you will always be there for her, no matter what, and that you want to share this time in her life with her, then ask her if she feels up to still being your confidante because you still need her support and advice. I hope it works out for you.

Hugs

Toomuch, that sounds like a pretty nasty fall! Since we're friends beyond BCO, I'm going to message you right now. But I had a similar experience when the report for some diagnostic imaging I had called out significant suspected liver mets. Thankfully, I knew I have a liver hemangioma, and when they got ahold of a past PET done several years ago for another concern prior to bc, it was there. Hopefully, this will turn out to be a similar pre-existing artifact, which is why it's never come up in he past. But I'm going to PM you.

Katie, I'm sorry your Mom is dealing with these issues. Many of us have dealt with bloating caused by our treatments, and weight gain can also occur, especially if treatment has altered her habits, including how much exercise she's getting. Are the stats shown on your post yours or hers? If they're hers and she was treated in 2015, then she should absolutely report any lingering concerns to her onc, so that he or she can decide if some sort of imaging would be helpful to see what's causing the hip pain, for example. Beyond that, it's hard to comment with such limited information, but I would also be sure she's taking a good probiotic supplement. Tummy issues result from chemo destroying all the bacteria, good & bad, in our stomachs and intestinal tracts, and that takes a long time to rebuild. This is where a good probiotic can be helpful. Also, depending on your Mom's age, the things you mentioned can also be simply menopause related. Her onc and/or GP really needs to help her figure out if there's a cause beyond age and/or lifestyle changes. Deanna

Hi, my wife was diagnosed with stage 3 breast cancer in december 2016 (she was 33 this time last year.) She has gone through all the treatments, like: chemo, herceptin because she's Her2 positive (I think is why she is on it?) and perjeta while she was doing chemo. She had a double mastectomy done on June 8th and had a decent recovery.

In early October, her right side pelvis bone area really started hurting. She describes it as if it's a bruise, and when she moves in certain twists/turns, that it feels like someone is kicking her on the bruise. When this started happening is when she was working outside a lot, but she stopped for a few days which made the pain lessen, but never really went away per her description,

There are days where it's fine, days where it's not fine. More often than not, she mentions it bothering her (she's a pretty strong fighter, so it takes a good amount of pain for her to say something like that.)

The thought in both of our minds is: Did the cancer already spread to other areas in her body? The pet scan she had earlier in 2017 showed that it was in 7 or 9 (don't remember which for sure) of her underarm lymphnodes (left breast.) The other scans and blood tests that have been performed haven't shown a tumor marker increase. There's another Pet scan coming up at the end of the month, but the anxiety is killing us.

Based on what I described, does it sound like her cancer did spread to other origins of her body? like we got it too late? I know everyone knows what I want to hear, but I wouldn't mind hearing an objective opinion favoring one side or another.. She has no other "stage 4 symptoms" that I've read, "just" this pain near her pelvic area.

thank you for any insight

Dear all,

First of all, I would like to apologize for my English.

I'm new to this forum, and not sure whether I should be considered stage III or IV (I couldn't get a clear answer to the question from the doctors so far).

I was diagnosed with a ductal infiltrating breast tumor (almost 6cm) in april 2015. After neo-adjuvant chemo (may - october), surgery and radiotherapy till feb.2016, I received preventive hormono-therapy (femara).

However by end september 2016, a strange spot (which I first thought to be an insect bite) appeared on my abdomen. After a new surgery, I started radiotherapy again. But before the end of the sessions, new spots appeared, this time on the left breast. I started other hormonal therapies, and even a targetted therapy (which seemed to work for 2 or 3 months). Now the skin mets are exploding and extending to the right breast.

Last week I received first injections of Faslodex. As so far none of the hormone therapies worked, I'm not sure this one will make a difference.

So I wandered whether there were other patients with skin mets ... and whether I should raise this question here or under stage III ?

Thank you

Yaelle, I don't know much about skin mets, but Johns Hopkins, one of the premier cancer treatment centers in the US, probably does, and they have an on-line forum for answers from their health care professionals. I think, but am not sure, that they might also do long-distance consultations, especially since you are outside of the US. Here's a link to a page for asking a question, and there's also a phone number where you might find out if they do telephone consultations for a situation like yours. I am sure you have wonderful doctors in Belgium, but Johns Hopkins might be able to answer some of your questions your doctors have not.

http://www.hopkinsbreastcenter.org/services/ask_ex...

I also just did a quick search of our discussion boards here for you, using the search to the upper left, and I found this thread on skin mets.

https://community.breastcancer.org/forum/8/topics/...

Good luck! I'm glad you've found us. Please keep us posted on your situation. Deanna

Thank you Cive and Deanna (especially for the link to Hopkins.

I'm very glad too, that I found this place .. and you all.

Hello. I've haven't been on in several years but I've been reading posts over the past week or so. I was lead to a pet scan after having sternal painot on and off for a while with upper right abdominal pain and slightly elevated liver enzymes. Results received yesterday state intense uptake in distal stomach and antrum with maximum SUV of 19.8 my onc says not to worry most likely gastritis. I am scheduled for endoscopy Monday. I did have endoscopy and colonscopy January 2016 with inflammation noted at that time amd have been on on protonix since then. I always have abnormal bowel movements amd have had heartburn for years. Do you believe with 19.8 that this can be gastritis? I have been up all night researching and realize that stomach ca is a rare met to have. Has this happened to anyone before? I just turned 47 have 5 children 16 to 25 and am full of anxiety all while remaining calm as to not alert my children.

Sorry to ramble. Off to work now like I'll be able to concentrate....

Thank you in advance to anyone who may provide any support and advice.

Keri

I'm also BRAC 2 positive.

Thank you chrissyb!! Yes I keep telling myself that I have to put the phone down and the past 2 days I have. I've enjoyed playing some board games with my kids... they are my heart and soul.... I truly appreciate your support and have my fingers crossed also.. I have a busy weekend planned and just waiting for Monday. I hope my GI MD with have some answers on Monday.. thank you again!! And will post results when I get them. I just needed someone to tell me that they have a similar situation. It's just the uptake that had me concerned. 😊

Rosabella, I'm Stage IV with extensive bone mets and have skull mets, lots of them, and my skull does not hurt at all so I hope that's reassuring for you. Have you seen your oncologist lately? Because if you're concerned the best thing to do is to make an appointment to have your worry discussed and possibly checked out. I don't believe we should wait around if we have the least concern but should act on it. Sending love and hugs....