I need to know if I am Stage 1 or Stage 4

ladys229

I am so scared. I don't know who to trust. I want to know what is going to happen to me. My biopsy found invasive ductal carcinoma in my left breast, I had a left mastectomy. No lymph node activity detected. Everything looked good. Onc set me up for 6 rounds of precautionary chemo. Before chemo, he ordered baseline bone scan, chest CT, and electrocardiogram. The bone scan showed something on my left femur. So he ordered MRI. He didn't exactly tell me what the MRI said, but after he got the MRI results, he ordered a PET. The PET showed the femur lit up on a scale of 1.3 on a scale of 1 to 5. He said that was low, so he is treating this as Stage 1A breast cancer. So I started chemo 6 days ago.

But I'm scared! I want to know conclusively if I have mets to my femur. The Onc said a biopsy isn't justified because it would be a major procedure and could cause deformity, and the three results (bone scan, MRI, & PET) he said, after consulting with the RADS that read those reports, he is keeping me at Stage 1.

I want to know for sure. Am I being unrealistic or paranoid?

Does breast cancer change from Stage 1 to Stage 4 easily??

mmontero38

Dear Lady: I am glad your oncologist ordered all these test because it means he/she is being diligent in that they are watching you closely. I don't think you have mets to the bones otherwise they would have ordered a biopsy. I don't think in my experience that you go from stage 1 to stage 4 so rapidly. They have started you on chemo as a preventive measure which was the same in my case. Just keep asking questions until you understand and are completely satisfied with the response. It is your health and body involved and you need to be your own advocate. Keep us posted. Love, Lili

seof

I am sorry that you are not sure you are getting clear information. Sometimes we have to ask the same questions over and over before we get clear answers. I would ask your Doctors again and insist that they explain things until you feel satified that you understand what they are telling you. If they can't do that, find Drs. who can. Cancer is scary, but normally there is time enough for you to feel confident in your understanding of your own situation. Is there someone who can go with you to talk to the Dr.? Sometimes 2 heads are better than one, especially with information that has such a powerful effect on your life. Write down your questions ahead of time and take notes while you are there. My husband and I routineley take our "question list" and ask together and take notes together, then we compare notes later to be sure we understand what we were told. It helps a lot for me. you need to do whatever it takes for you to feel confident in your medical team.

Take care of yourself seof

chenheart

I was staged at 2B, as my lymphnodes were affected, which yours were not~ which is a GOOD thing! I always took an extra pair of ears with me ( a family member or friend) on DRs appointments; I was always in such a state of fear/shock that my comprehension level dropped to almost nothing! It was suddenly as if I was being spoken to in Egyptian, and showed diagrams in hyroglyphics! Which would all be fine, only I don't understand those languages!

Ask for definitive results~ and let your medical team know how concerned you are. Be persistant, they will communicate with you if you take charge!

Be strong, and keep us in the loop!

Hugs,
Claudia

cabbott

It sounds like your oncologist is aware of the possiblities and is taking no chances. The fact that your lymph nodes are negative suggests that it has not spread and this is NOT a met. That doesn't mean that the bone scan didn't find something, but it is not likely to be breast cancer. I just checked and an abnormal finding on a bone scan does not mean you have a met. The bone scan has to be followed up by other tests, which your doctor did, and interpreted in light of what they show, which he or she also did. You may have arthritis, a bone infection, an injury or some other problem. Only a doctor could decide such a thing. Your doctor isn't taking any chances though. He is ordering the chemo, which would be the same whether you are stage 1A or stage 4. If I were you, I'd do the chemo just to be sure, have a followup test after whatever period of time the oncologist said was reasonable (like right after chemo is completed), and get the radiologist and oncologist to brief you on any changes. I would also go right now to the hospital where the tests were done and get copies of the reports on each of the tests. They were writtten, they are yours, and you should have them in a ring binder to share with future doctors. All you need to get your own reports are your insurance cards and your picture ID at most hospitals. Just because you have breast cancer doesn't mean that you are immune to having other concerns, even a bout of arthritis! Those other concerns might interest your primary care physician more than your oncologist. I wouldn't forget the something on the left femur, but right now it is only something to check on later rather than something to keep you up at night staring at the ceiling.

24242

I was stage 3 with 11 out of 21 nodes positive and I too had thins show up on a PET scan but these were areas that were lit up with arthritis and in back where vertabres were collapsing. It is amazing what is picked up and can be sorted out. One has to be their own best advocate so you have to keep asking the hard questions until you are satisfied no matter what...
Be good to yourself
Tara