Do you worry that "the cure" is coming but to late for you?

yep

When I read the article in the paper yesterday, I was under the impression that the vaccine may be helpfull in preventing recurrences as well. If this is true, I am going to ask my oncologist if I can get in on the clinical trial.

One Love...  Jackie

Is there anything wrong with Hope? With getting our hopes up? Without it we have nothing!

I choose hope!~

Frankie don't you already have hope?Your stage 3-you can be cured. You have a TON of hope. With surgery alone you could have been cured. I bet a lot of stage 4 women would like that type of hope.

Look at what happen with testicular cancer- literally overnight they came up with a cure for stage 4 patients. If it can happen there it can happen for breast cancer.

Anyway I can see I am annoying everyone-I will go back to my hopeless depressing posts:) People like me better then.

Stage 3 or 4??? Clinically on paper Stage 3 BUT I am trying to determine one way or another. You see from the get go I have created threads or joined in on threads re: bone mets. From my first staging tests/scans we have been chasing one scan from another with inconsistencies. My profile page tells my story to date.

Oct 21/09 -Original bone scan-I was told by my surgeon -That it was CLEAN but my report goes to cancer center-Onc's review it and tells me there's a "questionable" spot on my 7th left anterior rib. Says it's a subtle sclerotic focu. -Otherwords, not sure if it's cancerous or a previous fracture scar. Onc thinks it's a previous fracture scar.

Nov 19/09 -CT Scan neck/chest/abdomen. Same "questionable" spot on the 7th left rib shows PLUS  another sclerotic lesion was found in the right S1 pedicle. So Onc ordered a MRI -for the S1 (spot) it was determined to be a bone island -NOT cancer.

So I have often wondered and worried over this "questionable spot: on my 7th left rib??? Is it really a previous fracture scar? So fast forward...right before my rads were to start my Rad Onc ordered a chest CT Scan (April 9th) and guess what 2 new "questionable" spots on my T5 & T11 (spine) showed uptake that was NOT there on my initial staging scans (see above). These findings were listed as "vague" WTH? So my rads were put on "hold" because my Onc's (Rad & Medical) ordered a bone scan (April 26th) to follow-up with the CT Scan and guess what -CLEAN. So rads were back on the table-now in treatment. On May 3rd when I met with Onc and questioned him about the inconsistencies I was told that we would have to repeat these scans 3-4 months to see if any changes are noted. Plus he said that either one of the tests could have been a "false negative" or a "false positive". I am so frustrated, beaten down because I still have NO conclusive answers where I am I with this fricken disease. I'm scared. My Onc thinks I remain a Stage 3er but how does he really know??? Scared and trying to remain hopeful Pure!

Is anyone else out there going through the same thing???

Frankie

I have never had that situation but in reading what you wrote it does sound like nothing. How does your oncologist know? Well he works with these situations and tests daily sooo. With that said can they biopsy any of the areas? Would that make you feel better? I would explain to your oncologist how unsure you are and ask if there is ANYTHING they could do.

When I had my ct/chest done they found 2 spots one was 2mm and 3mm. They never told me about them-I found them in my report like 4 months later. So I called my doc freaking out and she says  that the radiologist wouldn't have even mentioned those spots if I had not had bc before. She said they were nothing. Didn't he say I needed to follow up.  So I don't know-they are trained to know these things. And I just accepted it was ok.

Why do they wait 3 months to repeat the scans? What is happening in those 2 months? I take it no more tx and I take it your not doing hormonals so what would change? Maybe if they got bigger?  They can't biopsy?

Did they don contrast when the did the ct for radiation?

Elaine-Very well put (I think it's a mind-set-Attitude is EVERYTHING!)

Pure- Because these "questionable" spots were brought to my attention by my Onc I felt that it must be significant. I had'nt just read about them in a report. Plus my rads were put on "hold" for further investigation. I felt some relief that my rads were put back on the table and I was able to resume with treatment after my bone scan, but was told by my Rad Onc that because of my age they wanted to ensure that I received the necessary treatment. 

They did contrast for the Chest CT Scan.

In Canada it is not standard to use a PET/CT or use 18F-Sodium Floride (Na18f) contrast for Bone Scans. The contrast that is used is technetium-99m (99mTc) -which is a less expensive but not as highly sensitive as Na18f.

Yesterday, I brought to my Onc's attention about a clinical trail (funny) I had to bring it up to him. I go on clinicaltrail.gov to keep myself inform of treatment options regarding trails new meds, etc. I came across a trail #NCT00686465 PET/CT for the diagnosis of Recurrent Cancer: a Feasibiliity Study (PETREC) and #NCT00922519 18F-Sodium Floride (Na18F) whole Body PET Scan for Imaging Bone. As I have not had either (being in Canada). I know a lot of girls here (in the States) talk about these types of scans. I brought this up to him as I thought it might be beneficial to try these scans and perhaps find conclusive answers. I know that not all scans are accurate-including these that are used in the States. I was grasping this is why I presented these to him and because they are actually happening at my cancer center (go figure). Anyways, he explained to me that things in the medical field are NOT always 'black & white" and that often things fall in the grey area. He said that even if I participated in these 2 trails (diagnostic scans) that I may still not get specific answers. He goes on to say: If the results were:

Negative:

1) it could be because there really is no cancer or

2) because I have undergone systemic therapy (chemo) and still am undergoing treatment herceptin it is suggested that 'osteoltic bone mets may become osteoblastic after effective treatment. Meaning that there could have been cancer but will now show up on a scan as 'healed". -So other words, not showing a "true mets".

Positive:

1) it could be a true bone mets or

2) show up as "something questionable" but not in fact be bone mets (i.e degenerative changes that are benign-bone islands, arthritis, etc.)

As you can see things can be in the grey area and not be definitive. Guess, this is my case.

I told him that I would think about what he has said and I will get back to him if I still want to do the scans (trails). The reason he said that he wanted to wait 3 months is that he would prefer not to expose me to more radiation (scans) being let's wait...and not chase things with further scans-unnessary.

He actually brought up the discussion about the bone biopsy and said that he was not sure if he could find a surgeon who would be willing to do one because of the above variables ( See ABOVE) as a biopsy would apply the same. It kinda made sense to me -although I was crying, numb and listening-zoning in and out (albeit) at the time of our conversation.

Any thoughts??? appreciated!

Frankie

I would post this as a tread. I am sure someone else has been through something very similar could share there experience. It does sound like nothing though or I would assume they would push for more tests of a biopsy. They wouldn't risk your health like that.

Start a thread though so you can get some peace of mind or support from someone who has gone through this.

Yeah, I'm glad they're close, really glad.  It did make me sad though, when I read about the possible future vaccine, and wished they'd found one a very long time ago.  I don't think we'd be human if we didn't wish it had been there for us.  I don't really think about it unless I happen to be reading about the new research, though.  I hope your dreams stop soon - that has to be hard.

Just my opinion but after seeing how fast herceptin moved once they realized what it could do I think the vaccine would move as fast as possible also if it turns out to be what they are hoping, even though some drug companies may try to do what they could to stop that from happening.