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

does anyone know if  her2 pos women , a more agressive cancer, even get to live long enough to be diagnosed with mets before their followup screenings? it just seems like most stage lv women are her2 neg. I just wonder, cause my big ole lymph nodes didnt even show up on ANY of my imaging, but were palpable to myself and the docs. i just suspect that i am prolly already stage 4, but its undetectable till it reaches a certain size. freaks me out a little. thx

Thanks Moira. New Zealand! Yay! one of my favorite places i havent been to yet since i read the book "the bone people " by kerewin holmes.  problem was, i stopped doing mammos eight years ago, cuz they just kept being cysts, and the place i went to HURT. i found out mammos dont have to hurt. then when i asked my BS said that by the look of things, the tumour had been growing for 8 yrs. when they tested me, they said i was her2 equivocal. the breast tumor itself was small and slow growing, but the nodes! The cells thier in some had completely taken over! "with large and occasionally bizzare forms."   So i had to do herceptin which i had to stop due to ejection fraction of my heart falling more than 10 %.  so its back up almost to where it started, and set to go with herceptin again. reason i asked is, after TCH, 33 rads and surgury, i did 3 months of arimidex cause i am almost 100% estrogen pos, 6 years after menopause! and have fibroids which were supposed to go away after menopause. anyway, 3 mos of arimidex caused trigger finger and pain. i dont want any hormonals... the doc wants to try tamox, cause of slight ostopoenia, which they didnt do the dexa scan till after chemo. I felt perfectly fine strong and healthy till all this. my whole life has been aweight bearing exercise(construction, Housepainting,Landscaping, running jumping climbing! and have lymphema now and dont want to get endometrial cancer, cause i dont want lymphedema in my legs. just about willing to have a local recurrance instead. thx!

thanks, chrissy. Australia! my other favorite place i havent been to yet!  I do a little silversmithing, and opals i love cause they have ALL the colors! SO, my onc, whom i have a like/hate relationship with, said he would talk with my gyno there, but tamox was his first choice, and his rn says  save "big guns" for later. she didnt say if necessary. Yah, my heart was near perfect condition according to pre testing. even with i am embarrassed to say a history of, and currently smoking. I know i know but it soothes my nerves,or i would be biting people! (And actually, come to think of it, havent really been anywhere. HA! xcept various states)   : 0

I developed dvt ( blood clot in left femur) in between final AC, and the start of Taxol. I've been on injections of Lovenox twice daily since Feb. 15.



Usually one only takes the injections for 5 days, but because they believe chemo was the cause, they want me on it for 6 months.



Smoking would greatly increase that risk.



Blessings

Paula

If it was there, it is considered a local recurrance. a metastisis is if it went far, like lung liver bone or brain. and would not change your stage till that happened. so you are good. altho probably no fun to have to deal with even a local recurrance. so sorry you have to deal with that....mumito, as if bmx wasnt enuff.

Hi-  I have been having right anterior chest pain for about 4 months- hurts esp with cough, sneeze deep breaths.  It is on the affected cancer side.  Saw PCP cxr negative had CT scan pcp reported to me as neg. but I looked it up on the computer and said no evidence of metastatic disease - anterior rib fractures.  I have not had any trauma to that area except rads.  Should I ask for more testing to r/o mets as being the cause of the rib fractures>  Thanks!

I just met my RO today. I actually met her in August before I had surgery, but today was for ct scan, tattoos, etc. They did an excellent job explaining everything to me.



One of the things they told me is, rib fractures can happen easily on the radiated side.



3girls~~Is it possible that you could have bumped your rib at some point and forgotten about it?



Paula

Kathryn I know a lady. She was tn 23 yrs ago but 9 yrs ago regional recurrence. All over. She went to md Anderson they gave her some super chemo and it's nine yrs now since regional recurrence. She is 70. She also survived lung cancer.

Hello all. My question is for those with bone mets. Does new pain always mean progression?

My mom was diagnosed a few months back with mets in her clavicle bone, T5, L3, L5, sacrum, and illiac. She had rads to the clavicle (for pain) and the T5 (to avoid further damage/compression). She has been on Exemestane (generic Aromasin) since February and monthly Aredia for her bones. Other than hot flashes and joint pains from the meds, she has been feeling great...until this past week. She is having low back pain that she describes as feeling like severe muscle pain as well as shoulder pain. We don't know if this could be from the mets or something else entirely as it feels different from the pain she was having when first diagnosed.

Her shoulder only hurts when she tries to lift her arm, though if she "pushes the joint" she can lift it all the way without pain. As for her back, she flopped down on the couch last week and felt a VERY sharp pain that only lasted a few seconds down in her lower back. For the next few days the pain was on both sides of her lower back and bad on sitting an standing but fine otherwise. Now she only feels it when she turns over in bed. Advil makes the pain in the back and shoulder much better, but doesn't take it away completely. It sounds like progression, doesn't it?

She's had odd aches and pains in her joints and muscles since starting treatment and they last a couple of days and go away. These are different in that they feel better than they did when they began, but don't seem to be stopping.

She is scheduled for her first scan in a couple of weeks and will see the onc on July 12th to find out if the meds are working. He is booked and not likely able to take her sooner so she is starting to really stress about the pain and wanted insight from others with bone mets, if possible.

Sorry for the long post!

Hi msjag,

It's hard when you want to find the right answer and solve the problem. I don't have the answer for all the info but there is a thread here for brain mets that will have a lot more info that might be useful. This is for women who are currently being treated for brain mets. Please do not post there  with any questions but reading there may help give you some idea of what is available.Coming back here with the questions is fine though.

I know how very much you want all the naswers but it is very important to those wmen on that thread that you do not ask your questions there but come back here.

Moira

Mine comes and goes. Before I was dx, I had back pain for over a year that my onc said couldn't possibly be mets because the pain would go away for 3-4 months each time and then come back. But it was. I suggest that any pain that lasts longer than 2-3 weeks should be discussed with your onc. It could be from a variety of reasons that are not cancer related, but you should get it checked to be sure.