after 4 years...then what?

[dberg]

My onc doesn't seem to be all that interested in me. I'm doing fine, with no problems, which may be the problem! He seems to pooh-pooh any questions I have about recent developments.

I'm wondering if you all have had regular mammos or if you've gone to digital for your remaining breast. Are they worth it? I'm supposed to have a mammo followed up by a MRI. I'm now 49, used to have dense breasts, but don't know what they are considered now since I've gone through chemopause. What are the "interested" docs saying now?

Yes, I'm searching for a new onc!

[Carolyns]

That is a GREAT question. I can't wait to hear the answers. I am 19 years out from my first diagnosis (in my early 30's) and had a second primary and now I have mets. I had to insist that my doctors follow me and I am convinced that they never took it seriously...perhaps because they don't believe that an early diagnosis of mets extends life.

Anyway, I was followed by a diagnostic mammogram on my remaining breast (while I had one) and tumor markers. The mammogram uncovered my second primary 10 years after the first. My tumor markers spiked when I had mets but unfortunately they were drawing the blood and no one was reviewing the results. I presented with two lumps and was still told it was "nothing". I insisted on an ultra sound which proved it was not nothing. My Onc. was SO sorry that she ignored my concerns and then I found out that no one was reading my marker results which had spiked prior to the lumps appearing. It seems that they were just humoring me with visits.

In my opinion this is a huge issue. I hope that there has been progress made in this area.

Thanks for asking the question.

Carolyn

[CLTann]

I can't believe my eyes while reading your post. This is malpractice. If the tumor is in the doctor's body, I bet he or she will take more than notice. Consult an attorney and sue the guilty person.

[Carolyns]

Ann,

It is very discouraging to be treated this way. I tried to sue the first doctor who delayed my diagnosis 19 years ago. He said that I was too young for a mammogram at 32 when I told him that I felt a lump. He told me to visit every 3 months to monitor the lump and seemed very attentive. All the while in my chart he was writing that I was "obsessed" with a fear of beast disease. I found this out after reading my chart in the lawyers office. I changed doctors and got a mammogram which found cancer the first time. Anyway, I learned it is not so easy to sue a doctor and it is very time consuming.

Anyway, that experience made me understand that I am not up to suing anyone. It also made me wonder - What is the proper follow-up for long time survivors. I wish that someone could gain from my experience.

I think that the excellent question raised by dberg. In my case markers would have been a sign. I also had bone pain but mistakenly thought that the bone density test would show activity in the bones but I was wrong on that. So a bone scan would have also helped me discover the cancer sooner.

Carolyn

[Becky]

In alittle more than 2 months, I will be 4 yrs out. In Sept (when I am at 4 yrs) I will see my onc for the last every 4 month appointment and will move to every 6 months. I asked if at 5 yrs if I would move to once a year but he said "we'll see". I get a digital mammo every year (I still have both breasts) but want to also start getting a Dilon or MRI at the opposite 6 months. My onc does the tumor marker and blood work every time but I get a copy too and review it with him (I go to the cancer center a week before my appointment for blood work). My onc is the best but anyone can forget to look so I make a point to look myself. However, any test or bloodwork done by others I have a copy sent to my onc. He always, always emails me to say they are normal or what things mean (even if I already know). I am also carefully watched by my PCP and radiation onc who both see me every 6 months (opposite of each other). I see my surgeon once a year. I call them Mr. March, Ms June, Mr September and Mr December. I see my gyn in July but they don't care and I am looking for a new practice. The more people you get involved with your care, the more you are cared about.

[ElaineM]

I follow my doc around if he ignores my concerns. I would also get a second opinion. I have been there and done that. Recently I got a third opinion which helped to move things along. I remind my doc when it is time for tests like cat scans, mammograms, Pet scans, MRIs, ultra sounds, blood tests etc. I keep those things on my list and remind him the next time I see him if he doesn't respond the first time. Doctors are human beings. They forget things. They get overwhelmed or stressed out by work just like we do some times. I tell mine that I am helping him to help me when I remind him about things.
It pays to be as proactive and assertive as we can be.
Keep going !! Follow your intuition. If you think you need help, please find ways to get it.