Topic: If you are NOT stage IV but have questions please post here

Jul 27, 2012 04:58 PM chrissyb wrote:

Ssmith, so sorry that you are having these concerns.  I don't have lung mets but I do have many B9 nodes within the lungs caused through lung infections in the past.  I am told they are scar tissue.  Hopefully what your pet is showing is just the same sort of thing. At least you can be assured your onc is on your side and is being very vigilant with your health. 

Thinking of you and please let us know the result of your biopsy.

Linda, just because the PET showed something and your MO has ordered an MRI what is being looked at may be something else altogether.  Sometimes results of Pets show a false positive even with so called bone mets so your MO is just being super cautious for your benefit in ordering the MRI.  If that comes back positive, then he/she will surely discuss with you what needs to be done for treatment.

Hoping all is good.

Love n hugs to you both.   Chrissy 

Jul 28, 2012 02:42 AM mimi24 wrote:

Thank you to everyone who replied.  After 3 mri's, a pet scan and a bone scan, the doc finally decided it was severe inflammation from my arthritic neck that caused the fluid on the spine that showed up on the mri......which precipitated the pet scan which showed "stuff", which precipitated the bone scan. Whew, what a mouthful..........anyway.........that sound you hear as you read this is a big whopping sigh of relief.  Now I just have to convince my heart doc I need to be on some kind of anti-inflammatory so this doesn't happen again.  (He had told me to stop taking it in April.)  My best wishes are with everyone who has the need to post on this board.  Pat

Jul 28, 2012 06:55 AM ssmith37 wrote:

Chrissy and bak94, thank you for your responses.  Turns out it is lung mets, is inoperable, and without chemo, I would probably have 3-6 months to live!  Wow!  I may have bone mets as well.  I will have a bone biopsy on Monday, along with the reinsertion of a port for chemo that will start next week.  Carboplatin, Gemzar and Zometa.  My onc says the side effects are nowhere near what I suffered with A/C and Taxol.  I hope he's right.  Guess I will be posting on a Stage IV thread now.  Good luck to everyone here.  Pat - congratulations on the good news.  Linda - my onc never checked tumor markers either because of the high incidence of false positives and the anguish that causes.  I'm hoping your onc just has your best interests in mind.  Keep enjoying the funny videos!  I think I will make more of an effort to enjoy more funny videos myself now.

Jul 29, 2012 01:11 AM FLtricia wrote:

My 87 year old mother, 16 year survivor had mammogram, bone scan, chest x-ray yesterday. She barely got home and received call they scheduled her for scan of lungs Wednesday and appt with onc. Friday.  I fear it may be breast cancer in lungs.  I hope it is an infection or something simple.

My question is at her age is chemo and/or radiation her only options for treatment? Can they just give her an AI to slow things down?  My dad had lung cancer (heavy life time smoker) and at 86 they gave him chemo and radiation telling him it may cure him or at least give him more time. Within a month he was in renal failure and passed.

I want to know what to ask.  My mother is fine with a bad prognosis.  She said she was blessed with 16 healthy years. She is at the age that if they tell her she should do something she won't question (you never question a doctor) other options.  That's why I am going.   Any suggestions?

Jul 29, 2012 02:50 AM Kindergarten wrote:

Hi, ChrissyB, Thank you so much for starting this thread!!!!! I do have a question for you all. I have never had a CA27.29 test, until moving to CA. My first 2 oncs, did not test me. My new onc in CA, is a very thorough young lady and wanted a base line. Well, CA 27.29 was 67, normal being,38 and my ALp was slightly elevated too. She is retesting me in a month. If they are still at this level, would you agree to do scans, or wait and still do another repeat of bloodwork. What is considered high and when do you think I should have the scans done. Thank you in advance for all your replies. Kathy

Jul 29, 2012 03:16 AM FLtricia wrote:

Thank you learnin. The talk with her beforehand about turning down treatment is a good idea.  I've been "walking on eggshells" in conversations so far.  I guess we have to have a real talk before Friday.  She saw what my dad went through.  Also asking life expectancy with and without treatment is a good idea.  She knows what chemo is like, and she is much older now.

This is so hard.  Don't want to upset her. Don't want her to suffer through treatment. Don't want to let her go.  I pray it is not cancer and I am angsting about nothing.

Thanks again.

Jul 29, 2012 05:04 PM chrissyb wrote:

Kindergarten for a lot of people the CA 27-29 and CA 15-3 (those tests show virtually the same thing) are not terribly accurate nor reliable that is why some doctors do not test them. Because yours are outside the normal range your doc wants to test again so she can see if for you they are going to prove a good indication tool. 

As far as how high is too high before scans etc are done?  Well again it will depend on the accuracy for you of the test and of course how quickly they are rising. There are a few factors that will influence these results including inflammation in your body so the follow up tests will either fall or rise consistently which will tell your doc if she needs to follow through with scans. 

Hope this helps a little and your numbers are just because of inflammation.

Love n hugs.   Chrissy

Jul 31, 2012 11:19 AM srbl62 wrote:

Hello ladies,

Just wanted to give you an update. I was frantic panic the last time I was in here. All of my test results showed NED. I could not tolerate that arimidex. Just came off my 6 week break and my whole body feels much better. I took my first aromisin tonight. We'll see how it goes.

Jul 31, 2012 05:21 PM chrissyb wrote:

Sharon that is great news!  Sorry you had so much trouble with the Arimidex but I'll hope for you that the Aromasin treats you more gently.

Love n hugs.   Chrissy 

Aug 1, 2012 12:27 AM chrissyb wrote:

Hi mmizerak I understand how frustrating things can be when pain is involved and you are not getting the answers you need.  It sounds like the scan has really not given you an answer other than degeneration of the joints.........mind you, that can be extremely painfull.  

As your onc doesn't do tumor markers perhaps you could aks your PCP if he/she will order it.  Do you know if they are accurate for you?

Sure hope you get both answers and relief from the pain.

Love n hugs.   Chrissy 

Aug 1, 2012 12:53 AM chrissyb wrote:

mmizerak pain can radiate so sometimes where we feel the pain is not where the cause of the pain is.  I hear you on thinking about bone mets..........I have bad arthritis in my hips but the pain I feel is in my femur that's what I mean about pain radiating.  

Please never fear your physicals and never not do them.  If you think about it, they have actually saved your life and that is a really good thing.

Some docs are loathe to do the tumor makers as they are very often not acurate.......mine are always well within the normal range and the only thing that moves them at all (and that is only a point or two) is inflamation so for me they say nothing.  Having said that, it's not a bad idea to get a base level for you so as you already have an appointment with your PCP it will not harm anything to ask.

Love n hugs.   Chrissy 

Aug 1, 2012 02:13 AM blainejennifer wrote:

Minxie,

If you take the stats to heart, you'll make yourself crazy. Any stats available are - by the very nature of medical trials/analysis - out of date by the time they are available.

A trial takes 1 to five years to institute, then it takes a year or two to get peer reviewed and published. Even a meta-analysis of available data takes two or three years to get "done" and published, and uses old (ie: available) data.

So, let's say that, in a best case scenario, any available data is at least three years old. That is generous. It's most likely five years old. In that five years, new chemotherapeutic drugs have become available, and protocols have changed (for example: moving away from dose dense Taxol to weekly Taxol, and the improvement in response because of weekly dosing).

Some stats are good, some are bad, but this disease is very individual. A definite "your mileage may vary" situation.

That said - best of luck. Keep us posted, and add your data to this site by joining in. I get the best and most current information by reading this site.

Aug 1, 2012 04:17 AM Lady_Miz wrote:

Minxie...girl, I hear your panic! I know it is easier said than done but stop Google searching anything using the terms "rate", "expectancy", "statistics" or "percentages" as it will only serve to keep you awake at night instead of getting MUCH needed rest & recovery from the physical, mental & emotional roller coaster ride you've found yourself on. What you read as far as studies is only as accurate as the individual(s) performing the testing...need I say more?

Trust your doctor & your instincts (as I have had to tell myself again today, given my own hiccup in confidence) & live your life in spite of this ugly disease!

Hugs to you!

Aug 1, 2012 07:46 AM Lady_Miz wrote:

learnin ~

Thank you for your input - and you are most certainly not a raincloud. Breast Cancer is the raincloud here! I am exploring all of my options & will follow-up accordingly. Please private message me & let me know what your pain was like, where it started, etc..if your comfortable doing so.

Hugs!

Aug 10, 2012 05:48 PM chrissyb wrote:

Hi Staystrong.  I'm so sorry that your mom is going through all this.  One question though or maybe two, what is her ER/PR status as in positive or negative and also her Her2 status, positive or negative.  Why I ask is because if she is triple negative the treatment is slightly different than if she were ER/PR + Her2- or ER/PR+ Her2- or ER/PR- Her2+.  Sorry I know this is a bit confusing but the doc should have told her these things even if they couldn't tell her what stage she was at the beginning which sounds a little unusual.  You say that her cancer is very agressive so that would put it at grade 3 and if her tumor was large enough to warrant chemo first to shrink it then that would have been either Stage 2b or 3. Those things are worked out on size of tumor and spread to the lymph nodes and speed of cell divide.

As for being stage IV and the statistics that the doc quoted to her please don't let those numbers upset you as they are old statistics and it is very possible to live for quite a few years even with cancer to the liver.  I am no doctor but what you describe does indeed sound like a problem coming from the liver but whether it is mets or not well that can ony be confirmed with tests.  The CT she had sheduled will confirm what;s happening.

I know you said that your mom was on Zometa for her bones but was she not on anything else?  no other drug at all?  That information directs me to thinking that she is tripple negative ie ER/PR- Her2-  and if that is the case and the problem with her liver turns out to be mets (metastisis) then I'm sure the doc or Oncologist will recommend chemo again.  

As a stage IV person, she can with treatment have a good life length so please tell her not to give up but if she doesn't want anymore treatment, respect her decision even though it will be hard.

I hope this has helped a little but if you want to ask more questions please feel free to do so also please let us know how your mom's scans go.

Love n hugs.   Chrissy