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

Bone mets? I can't sleep more than 3 hours before I wake up with pain in the back. Opposite of my breasts. I've had a double mastectomy and reconstruction. Pet scan before surgery was clean. After I wake up I try different mattresses and positions, even Ativan and melatonin. No luck. Can't lay flat. Walking is pain free but I'm thinking 15 months of no real sleep isn't good. Does bone mets start in mid spine

Hi ladies. My mom had a stage 4 recurrence in 2014. She went on taxotere, herception and perjeta for 6 months. In January of 2015 she was NED. She continued herceptin and perjeta until August of 2015. Her onc took her off of all meds and said he wanted to "see" what would happen. She is still NED as of January 2016 on zero meds. Her onc wants her to think about whether she wants to be on herceptin indefinitely as a precautionary measure. What are your opinions? I think she should do it. The stage IV came back in such a sneaky and unexpected way and her prognosis was very poor at the time. If her chemo had been unsuccessful with the type of mets she had she'd have been gone in 6 months according to her onc. I guess I just worry that since the cancer came back despite successful treatment of her early stage cancer that it is bound to come back...but I don't know and I can't seem to find much info. Her cancer is HER2+, ER- PR-.

Hello, I was wondering if any of you were diagnosed with liver mets through blood work? My GGT is slightly over the normal range (all other enzymes are ok). First test was 36 U/l (which is the cut off), second test was 40 U/l. They are keeping an eye on it...next test in 6 weeks. They are assuring me that it's not mets but the same doctor assured me that my initial lump was just glandular...She also tried to reassure me by telling me that BC doesn't spread to the liver...wha?????

I will be getting my lung biopsy results on Tuesday and that will determine if I have stage iv or not. As much as I really hoping the nodule in my lung is valley fever, I'm wanting to prepare for other news. What did you ask or wish you had asked when you got the news that you had stage iv breast cancer.

Artista, will they not biopsy the nodule? You're in an area with a high rate of valley fever, I hope you don't have to wait too long to find out what is on your lung.

Also, I'm having trouble figuring out the diff between micromets and just when people say 1 lymph node involved. Does micromets mean a little was found vs someone who has 1 node involved means more than a little I assume? I guess the "mets" part of it sounds worse to me. Why not micro amounts, why is mets at the end?

oh ok, thanks!

Stephanie, I'm so sorry about your Aunt's presumed diagnosis. I agree that it seems a bit questionable to get a diagnosis without a biopsy, but without knowing more details, it's hard to know. Perhaps what the radiologist saw was just so compelling, he felt confident giving the Stage IV bc diagnosis. But I would certainly find out from her exactly what was done, and what is the next step. And I would personally want a biopsy to be absolutely sure of what I was dealing with, and hopefully that is the next step.

Good luck to her, and please keep us posted! (((Hugs))) Deanna

I don't post often, but visit regularly. I have recently had hip pain, soreness in ribs, and chest area where I had radiation. I've had ex-rays on hips and pelvis & NED. About three weeks ago I started having pain in my back that comes and goes. I could feel a little bumb on my spine, but took a lets wait and see how it goes. I went to see doctor on Thursday and she felt bump too, ordered X-ray which showed that i have a compression fracture to #1lumbar. No falls, no osteoporosis. I'm concerned that my cancer has returned. Bone scan is Monday and I'm scared. Severe anxiety that I'm taking meds for. I've been so positive and hardly ever think about cancer. Now this. Dr said as far as if she thinks it's cancer, she says 50/50. Don't know what to think. Anyone else been through this?

Wow!! Thank you all that respond to my message, I really appreciate all you guys words. She's actually really calm but I'm the one that is all sad and looking for solutions and answers. She's actually getting her biopsy tomorrow Tuesday. I will keep you all posted on the results. I still have hope that is not Stage IV...

Warm Regards,

Stephanie

Hi Mamiya,

They did a Mammogram and sonomammogram the lymph nodes were enlarge and it looks like it spreading on the left side breast.

I have had BC three times. I have never heard that my cancer was inflammatory. My first recurrence was subcutaneous--I had lumps along the scar line and up my back-- and the next recurrence was in a lymph note on the opposite side. (I had the opposite removed with the first recurrence.) Now, I have a very itchy, red, bumpy rash on my chest and a spot starting on my neck. I went to the onc last week and I could tell she was concerned about the rash but she didn't say anything. But she did order a PET scan and bone scan that got scheduled right away.(My first time seeing this onc. Finally have one I like!) I have beem looking up skin mets on google but all I see are skin mets related to IBC. Could my bc have morphed into ibc? Is IBC the only type of breast cancer that spreads to the skin? I get the results on Wednesday but I am going nuts not knowing. Thank you for any information or experience you can share with me. I don't know exactly where to post this question.

Hi Stephanie,

Since your aunt had a mammo and an ultrasound, not a chest x-ray, I wonder if she's been diagnosed with breast cancer metastatic to the lymph nodes under her arms. It could still be an earlier stage of breast cancer (Stage II or III).

Stage IV or metastatic disease is based on spread beyond the region into the bones, organs, internal lymph nodes or other regions of the body.

Your aunt is likely to be asked to have additional scans or tests to see if it has spread.

Of course, it's her choice to take the next steps and to share what she wants with you.

Stephanie, you can support her in so many ways!

I encourage you to support her to get care that's consistent with her needs and who she is.

You'll get a wide range of advice here, but the best treatments are the patients will do/undertake.

Stephanie, please take good care of yourself, while you're taking good care of your beloved aunt.

warmest wishes, Stephanie

Hi ladies, Can you please share what symptoms you had (or did not have) with your progression to stage 4? I am wondering which tests show if there is a spread or not. For example does a chest x ray show a lung metastitis? There seems to be so many types of testing, CT scans PET scans, ultra sounds, MRIs its all very confusing for ladies worrying about progression. Thanks, best wishes to you all love Muriel

Hi, Adele ~ You know, my first thought when I read your post is to wonder if you've maybe developed some truncal lymphedema? That kind of painful swelling more often occurs in the arm on a surgical side, as I'm sure you know, but many of us have had it show up in the truncal area you're describing -- underarm, over ribs -- and it can be surprisingly painful. When mine flares, it's often because of heat from something like a hot bath or hot tub (which I no longer do for that reason), or just getting overheated on a hot day. One clue would be if there's any noticeable (compared to the other side) swelling detectable in that area. If you push gently on it, does it briefly leave an imprint, especially compared to the other side? Other than that, if you had a clear scan 6 mos ago and didn't have any pain at that time, it seems doubtful that mets could appear and also become that painful in such a short time.

So if by any chance it is truncal LE, you can find more info' on that here. I'm pretty sure there's an entire thread about it. Other than that -- and assuming your TMs turn out to be normal -- if the pain persists, maybe ask for a limited MRI of that area. No radiation w/that, and it would reveal if you possibly have a hairline fracture or other skeletal issue unrelated to bc.

Hope this helps. I'd also be interested in knowing more about the trial you're in. Is there a thread here about it? If not, can you tell us more? Deanna