ok thanks Chrissy B

If it was in a week, I'd be alarmed. Congrats on the weight loss.

Normal weight loss with diet and exercise is one to two pounds per week. Working out five days a week certainly could be the cause.

I had symptoms- shortness of breath on exertion, tachycardia and unproductive cough. I started having symptoms very late, my lungs and mediastinum were riddled with large and multiple ones.

indeed, all depends where and how big

BevJen , did they do PET scan and did not find liver metastasis during that year?

Anotherone, BevJen, and DivineMrsM, thank you for your answers. Even with only 3 of you (so far,) it's interesting and kind of frightening the range of possibilities. I'm not yet done with my (first?) treatment and don't know yet what follow-up will be involved, whether tumor markers will be tracked, MRIs will be ordered based on my dense breasts, or what. My docs seem to be minimalists so I don't have a clue what is their standard plan, or what I should push for. Thanks again.

MountainMia,

I found a enlarged lymph node in my neck during a self exam. I had no pain and was quite surprised when they told me it was also in my hip, ribs, and lower back.

MountainMia,

In response to your question, this was the sequence. May 2018 CA 27-29 up to around 55; had CT and nuclear bone scan -- nothing showed. October 2018, CA 27-29 up to 94. CT and nuclear bone scan -- zippo. Asked for a breast MRI in case it was a local recurrence (although I had a bilateral mastectomy). Nothing. Wrote an email to Dr. Hortabagyi at MD Anderson asking what he would do (although I don't know him at all). He said if it was him, he'd have a PET/CT. Had PET/CT in Nov. 2018 -- nothing. Jan. 2019 tumor markers now at 181. Had consult at Hopkins in February -- everyone said they don't treat on markers -- rescan in spring. May 2019, a "wrinkle" appeared in the CT scan, nothing on nuclear bone scan. PET scan verified the wrinkle, although no one knew what it was. MRI of the abdomen followed -- oops, there it is. One liver met about 2 cm (and it didn't even show up before this???!!!) and maybe about 5 more teeny ones in both lobes of the liver. Liver biopsy also in May of the 2 cm lesion -- ILC, same as diagnosis in 2003!!!!

Bev

Thanks, Anotherone. I was just curious about how mets presents itself, and apparently the answer is that it presents in many many different ways.

Anotherone,

I've heard that same comment about how it doesn't matter if it's found early. I don't know how much stock I put in that. That assumes that we all have the same end point once metastasis is found. That may have been true at one time when there were very limited treatment options, but I'm not so sure it's true now necessarily. I realize that the American Society of Clinical Oncologists keep repeating that mantra, but when I hear it, I just want to slap them. We need docs who will think out of the box instead!

BevJen - so much agreement with you on this quote! -- "I've heard that same comment about how it doesn't matter if it's found early. I don't know how much stock I put in that. That assumes that we all have the same end point once metastasis is found. "

My view is, even if finding mets or progression early doesn't change overall survival (maybe the only thing they are measuring) are they saying it cannot improve QOL? Like right now...my MO had wanted me to go to yearly scans after not quite 15 months of NED. And I disagreed and said I wanted to scan again in six months. And lo and behold ....one of my spine lesions was active again (lytic) should I have waited until I had a fracture to treat it? Not to mention, what are the consequences of walking around with an increased tumor load...and don't mets themselves metastasize and spread elsewhere?

It is a balancing act as far as I am concerned. I am in agreement with my doctor about not scanning TOO much, but every six months seems about right to me for now.

As for how my mets were found, I am happy to tell my story again. I am another asymptomatic gal.

I had not been going for regular mammograms even though I was at the age that I should have been. A 2 cm palpable lump appeared on my breast out of nowhere in a spot where a smaller lump would have easily been detectable (so to me, it must have grown very quickly).

I went from diagnostic mammo/ultrasound to needle biopsy with u.s. to consult with surgeon, breast MRI, more US and needle biopsy of two other breast areas. No other cancer found thru the biopsies but the breast MRI showed a suspicious spot on my lung. From there, a PET/CT was ordered and ruled out any lung involvement BUT the scan found a number of bone mets. I went from healthy to Stage 2 to Stage 4 de novo in two months without any symptoms. My first tumor marker tests (CA 15-3 and CEA) taken before beginning chemo were in a normal range.

Without the breast MRI showing a false positive, followed by the PET scan, I would not have known about the bone mets, at all.

Vampeyes,

Another puzzler from my perspective. When I had my MRI of my abdomen that showed my liver mets this May, that scan also showed some type of cyst at either end of my pancreas. NO ONE has mentioned these since May. I actually forgot about them, intending to ask my MO if I should be seeing a gastroenterologist or someone else. So I don't know the answer to your question or to mine. I'm not sure what warrants a followup and what doesn't -- and how the heck would WE know?

Breast cancer mets to my neck's 3 central lymph nodes here--with no evidence of primary breast cancer or other metastases (so far).

As for the unexplained weight loss mentioned earlier in this thread, a dear friend of mine with breast cancer in remission for 6 years recently started losing a pound a day, despite eating like a stevedore, which set off alarm bells with all her physicians and led to an intense round diagnostic testing/scans.

Turns out that she went from hypothyroid to hyperthyroid.

They lowered her thyroid medication and she's all back to normal.

Hi Simone80,

I also felt like my right side lymph node under my jaw has a little lump while the left side is flat. I've been losing weight 5-10 lbs in the course of 2 months. Which Dr. Do you see about this?

Thank you

I have a question about when you are considered stage IV. I have just been dx with my 4th recurrence. It is obvious that conventional treatment is not working and I have progression. Just not sure if I am now classed as stage IV because my recurrences are in same area. I don’t know why it is important but I think because of the treatments I am now investigating. With every recurrence my knowledge of treatments increases...

Thanks and love to everyone....