INSOMNIACS place to talk in the wee hours

Nettie u'r not boring at all. So don't ever think u can't talk openly here about how u feel. Remember I don't know anything medically, I'm just telling u my experiences, But I did think everyone has a bone scan--I know my niece, sister, cousin and I had one at the start maybe cuz cancers were of a different kind even tho they are all BC.??? or maybe cuz I'm older oh wait, my niece is in her 40's Hmm I know I've had--Mugas, echos, US, bonescans, MRI's density, nuclear crap and heart different ones and cat and pet at different times so I don't know why. all I know is everytime I see her I get some kind of goofy test and now I say nothing to try not to get them but I'll be damned when she examins me she always sees where there is pain, maybe mine is just a nut for tests. I know my Primary is another nut that I have all kinds of tests and I see these people often so that's why I really hate going to them. haha the only ones I don't get are mammos and paps-----U said u asked u'r Dr. about it, ask again and ask why she doesn't want a baseline of what u inners are like. And Nettie mayb not everyone gets them I of course can be totally wrong about everything cuz Teka didn't get a bone scan???? Please don't go by me, Sas will b getting to really post and she'll get  on this and no doubt explain so so so much better than I ever could and she knows what she's talking about, I don't.

Camillegal, correct, seems like each member has been through a different BC experience!

Nettie, My PCP is a good listener and gives an excellent examination!

Granted that my BC was early and not especially aggressive, but I have had no testing beyond a yearly mammo and 2 x year manual breast exam. I'm a little paranoid about the lack of testing also.

Apparently there is no set standard of care for before, during, or after treatment. I had so dam many tests before, I felt like pitching a tent in the hospital lot. Now, my PCP is assuming the MOs place. I just put myself on a 1 year check with BS. I did have a DEXA after all was done. PCP will be watching tumor markers. No further tests scheduled, no Mamo, nothing to slam. 

I've read here that if a pain lasts 2 weeks, get it checked. My former NP said bone mets HURT, and it doesn't stop. 

Hi all,

Hi Ho - I'm really sorry about your friend, it is so particularly hard when someone is young.

I'm going to chime in on the scans question because it's one that I had for awhile too (at this point I'm like Cami - I told my doc I really don't want to see any docs at all for anything for at least 2 months, he said okay just get your mammo so I did and I have a callback - he wrote me and said please just do this one more thing and I will leave you alone). Anyway here's what I understand to be the case or have been told to be the case & it could be wrong.

As far as getting a PET scan at the 'beginning' - they will do one if there is a significant risk that the cancer has metastasized beyond the local area. And they do this because it will change the treatment protocol if there are distal mets. This is the basic reason for tests of any kind - to determine what treatment you should or should not have. 

By far the single most predictive factor for Mets in distant locals is lymph node involvement. Fluid from the breast drains into the auxiliary nodes, so if the cancer has lodged in the node it means both that it has traveled and that it has the capacity to live in different environments. If it's not in the nodes, then the risk that it is in distal areas of the body is relatively low. So the 'standard' for pretreatment testing is the degree of lymph node involvement, there may be some other instances when a PET is done - ie. the tumor is close to the chest wall, but otherwise the increased radiation is not considered to be warranted. Exposure to radiation is a serious thing - particularly for a cancer patient because radiation has a cumlative effect and a cancer patient is likely to undergo (over a period of time) more tests that will expose him or her to more radiation than the normal person. The type of scans that one would need to determine location & metabolic activity (what you need if you're looking for mets) are PET/CT & you're talking a lot of radiation with there - a chest CT normally has the same amount of radiation as over a hundred  chest X-rays. 

As to having regular scans following treatment - the 'standard' is not to to do scans unless there are symptoms that suggest mets have occurred. The first reason is to limit exposure to radiation - imagine your doc telling you that he wanted to expose you to the radiation of one hundred X rays every year for the rest of your life - we're not talking Chernobyl - but that's pretty significant. Think about what RADs does to your breast tissue & how changes can occur years after. The second reason given is that it is very very rare that finding mets 'early' has a great deal of benefit. The benefit of detecting BC early is that if BC is contained to the breast, it won't kill you - because your individual breasts are not necessary for your survival. That is why surgery is the primary treatment for BC that has not spread beyond the nodes. This surgery can in fact 'cure' you (you don't know whether you have been cured or not, but there is a good chance that ALL of the cancer can be removed from your body if it has been found before spreading elsewhere). Other treatments (RADS, Chemo, AIs, SERMS) are basically prophylactic in nature - they are done to treat cancer cells that may or may not even be there. When BC metastasized to distal locations, it tends to lodge in a lot of places (although they may not show up on a scan because they are too small). So surgery is generally not the primary treatment. The primary treatment is some combo of those prophylactic treatments & the thing is that the cancer cells eventually find a way around these treatments - so the treatments have a limited time span of effectiveness regardless of when you start them. If you use up the arsenal of treatments earlier all that has really happened is that you've used it up earlier (that's how the argument goes anyway).   

thanks Smaarty, I needed that! So, are you safely home now?

Thanks for posting Teka, I need the reminder it's ok if my house isn't perfect

Nettie, yikes, that's a lot, I'd get lost after a couple of those steps

Blessings, how did the dentist visit go?

Chevy, great he's feeling better. Walking like the Penguin, no big deal. Especially if he got all pur-teed up for you.

Sassy, hoping you're ready for your guests. (Don't know why, but I wanted to type: ready or not, here we come). Relax, enjoy and have fun with Phyllimahere and Spookiesmom. Hoping the visit isn't too many females for DBF. I'll ask for pix - especially before everything that happens in FL stays in FL.

Thanks ziggy!!!!

And chevy, I'm waiting. 

Well Holy Moly Guacomole! I assumed there would be more scans after tx's, thanks Ziggy for the info. I just assumed they would do something to see if it had worked, but I can see how there is probably no way to really know for sure. ugg...scary chit this cancer is.

Hole-I forgot to mention earlier that I was sorry about your friend too. Was she on BCO? ((hugs))

Okay Sass and PhyllitroublejustWAITING..... be careful going anywhere with her Sass.... You know.... that ankle monitor and all.... Did she ditch big Alice?    And Yes!  Take a picture of you too hooligans! 

Netti, I went back and looked at that bunch of stuff that you have gone through...  I don't think I can fix you.... not now anyway....  I THINK, and this is just my own experience, that when we take Antibiotics it screws up things in us....  and SOMEtimes, like with me, and Sulfa, AND Pennicillin, we can wind up in the emergency rooms!  And these foreign substances that we take for infections, etc, just hang around IN there, and wreak havoc on OTHER parts of us! 

And you have gone through entirely too much for any one woman!  So just don't do that anymore.....  If they want you to take something, tell them to "Hold on.... I have to run this by my team first!"   And then come here, and see what WE, the EXPERTS have to say about it..... 

Smaarty!  Your boob is slipping?  OMG.....  Put some Duck tape under it, and run to the Doctor's!    That just doesn't sound normal....  Geesh!  Now I have to fix you AND Netti! 

DH is walking ON THAT DAMN FOOT!  He is limping, but is doing so much better.... I tell him to walk like a Penguin.... that's what they told me!  But we are both so happy that he can put weight on it!    He can't have my flowered cane.... He can use my Grandma's....   But thank GOD he is better!    So I fixed him anyway.... Now I have to fix YOU guys!  xoxooxxo

You guys will love this....

http://themetapicture.com/if-youre-only-going-to-r...

Oops....

FBB, that sucks, but thanks for letting us know. Sending lots of gentle hugs and love your way. Will keep you in my prayers. Rest up and check back when you can.

FBB, wishing you a speedy recovery.

Chevy, thanks for trying to fix me as it seems the drs aren't interested.

Believe it or not, I didn't have it that bad just a lot of crud.

Just tired of having to second guess all these dang pains.