Question about detecting mets when mammo didn't detect cancer

Exbrngirl, I can certainly understand why you feel the way you do. What tx did you receive when the mets were initially discovered? Nothing is shown in your tag line.

My experiences are more like Dogandjogs. My small tumour was not detected in annual mammogram until it had spread through 9 nodes. They pulled my previous two years and still found nothing. And then when a lumpectomy showed unclear margins, I had a mastectomy. The pathology on my breast said that it was literally full of tumours. Some bigger than the 1.4 cm that eventually did show up on scans.

Add that experience to my friend who had 1 node at stage 2. Much better prognosis for her she and was carefully watched and scanned because she was part of a study. We celebrated her clear PET scan that June. In August she started having an unusual pain in her chest. She went through several different tx and trials and was gone 10 months later. Not an unusual situation in the bc world.

To answer the question of whether or not I want to know before symptoms ... I still have to say that I will wait for the symptoms. If I have 2 years from now whether or not I am in tx, I will take as much of those two years feeling good and out of hospitals as I can.

So basically you are living a normal life with the mets and no other tx. I don't think we a choosing very different paths then.

I agree that finding mets early has little benefit, in the long run, in terms of survival. Finding one small liver tumor and having a resection doesn't increase the chance of remaining Ned any longer than someone who had several large mets, did chemo and got to Ned. I remember reading somewhere that by the time a tumor can be seen on a scan it is already made up of over a million cells. All it takes is one of those cellS to survive and to multiply at another site.

There is so much that is unknown about mets. In some women, the mets spread everywhere quickly, where with others, such as me, I had very large liver tumors ( one was 11 cm), but had not spread anywhere else, eventhough the cancer was in my blood, as my tumer markers had doubled when I was diagnosed. Er+ cancer likes the bones, but for some reason er- doesn't. Not saying that er- women never get bone mets, but it is not common.

There are women who were diagnosed after me, with lower tumor volume in their liver, so their cancer was " caught early" , with the same cancer profile, who had resection who have already passed or are still living, but quickly had a recurrence and still doing chemo now. My cancer was not caught early, yet I have been Ned for almost 3 years. Why? I was lucky, I responded well to treatment.

If you talk to other long term survivors on these boards, they will tell you the same thing. It is a crap shoot. There are some women who are long term Ned on the her2 site, like 10 - 15 years, and neither one of them had their cancer caught early. One had it in multiple spots, including the brain, and the other had her liver covered in mets. Yet, here they are still Ned while I am sure they have seen many women in the last 10 years who " caught their mets early" yet still died a few years later.

Hi pip,

Please forgive my ignorance, I thought stage III got to finish tx at some point in time. So, it appears that us stage IV gals don't have a monopoly on lifelong, however long that may be, tx BTW, stage IV tx is not considered curative, we just do whatever is needed to keep the beast at bay. Is the intent of stage III tx done with curative intent? Sorry if these questions seem naive but we tend to live in our own world about these things.

if only it were black and white.... The tx for stage III is hoped to be curative but the expectations are not high. That is why they throw the kitchen sink at us. Sometimes I think they should do that for earlier stages too since there is no rhyme or reason (to the best of our knowledge) as to who of us who will progress. Look at yourself. Only one positive node should have been a good indicator for you to not have mets.

It's an interesting and very good discussion and I think it's very useful to compare thoughts, ideas, and research we all come across. Together I think we suss out a lot of information that will help us in our journeys - information we don't necessarily get from our doctors. Thanks, everyone. And sorry to Roses, we sort of hijacked your thread!

Jenny, mine was also huge by the time I finally felt it. It was partly because I had breasts that were always lumpy as well as dense. But I suspect it is also the nature of the ILC beast, which is why it tends to evade detection. It grows in a non-tumor like way until it finally gets so big that a palpable or visible tumor forms. I always think of it as being a little like candy floss, random bits of sugar, and then suddenly this big pouf on a stick.

Brnx, one of the really difficult things with stage 3 is this feeling of being damned if you do and damned if you don't.

Jenny, one more thing -that really bites with your mammo. Not all mammos are equal, and I so wish more people knew this. Also not all radiologists are equal. A lot of doctoring is really more like art than like science - reading pictures and surgery would both fall in that category, as far as I am concerned.

Brnx, yes, something like that, except that I think most stage 3 patients fully expect to have that damned bus right in front of them one day.

momine,

No worries. I understand what you're saying.

brnx, thanks!