Stage 4 of some kind

Waves2Stars

On 4/12 I was diagnosed with a brain tumor. The surgeon suspected it was mets from my breast. Pet scan showed an additional tumor on my lung and positive lymph nodes in my sternum. The brain tumor was removed on the 22nd, but pathology came back suggesting it was from the lung, not the breast. My MO said this may be because the pathologist didn’t have info that I had previously had BC, like they made assumptions without all my history. My tumor markers are high which points my MO back to BC and not lung cancer. They are retesting the sample plus doing some new genetic testing, and am having a lung biopsy in a couple days. I am dismayed at how long it’s taking to get a definitive dx. They said I am stage 4. I am not really scared, but irate there is any confusion as to what cancer this is. Is it really that hard in this day and age??? It is one of the two most common cancers, not something rare! I don’t know if I should post in the not diagnosed forum, or just wait until im sure it’s breast cancer

katg

waves 2 stars, it seems to be more a new diagnosis after another one? For now, I like the title you wrote, I do not like that your body did not clear the devil cancer already. I know the treatments are getting better and better , as long as we want to work through them one at a time.

I suppose when more than one test happens and more than 1 doctor is involved, the definitive answers are not quick to come. I have no idea how they figure out if it is a cancer that spread or a new one and especially how long it takes to find that out. I truly hope you can get the lung biopsy done with a calm body and that your doctors regroup and get your info to you with a plan as soon as possible. Having the doctors review your file does not seem like to much to ask, does it? I will be thinking about you. Please give us an update.

exbrnxgrl

waves2stars,

Your frustration is totally understandable. I have no medical background but even in this day and age, a cancer diagnosis is not always cut and dried. The diagnostic process is not always as black and white as we imagine. I am glad they are retesting the sample and that you’re having a lung biopsy. That should clear up the diagnosis. Take care.

Waves2Stars

Thanks, Katg and exbrnxgrl, for your replies. Someone dropped the ball getting my sample to a genetic testing facility. I’ll spend Friday calling everyone who handled it to find out what went wrong so it doesn’t happen to someone else. They wouldn’t have even checked if my mom and myself hadn’t called every nurse at every facility I’ve been to asking why there was a delay. My lung biopsy indicates lung cancer is the primary, as well. I didn’t realize how similar the gene sequencing is between breast and lung cancer until last week, so it really can take extra deliberation and tests to get the correct dx. I hope this post helps others understand how important it is to advocate for yourself, and how complex the testing can be

Wren44

I'm sort of in the same situation. There is a mass on my chest wall. MO has ordered all kinds of tests including biopsy. I also smoked for years, so lung cancer is a possibility. I hope they can get the tests going pretty soon to decide what's going on. The radiologist thought the mass looked like a BC met, so I hope he was right.

moth

oh no wren, I'm sorry to hear this news

Waves2Stars

I’m sorry, Wren! What kind of scan revealed it? Was it routine or did you have symptoms?

I just found out today, when I was supposed to have an appt for them to give me the final path of the brain and lung, that there was a hold up at the lab and they still aren’t done. Not only that, but the lab never sent material to the genetic testing facility who requested it two weeks ago. I could be waiting for as long as four more weeks for the complete genetic info, but the lab put a rush on it. Told my onc I’m going to restart tamoxifen until some lab proves this isn’t BC because I feel like a sitting duck doing nothing for 4 weeks now, and potentially 6-8 weeks for the complete picture to come in. I am ovulating, and it makes me sick I am getting estrogen surges while this large hospital’s lab can’t seem to get their act together. Also waiting to get approved for a second opinion at MD Anderson.

wondering44

wave,

I think we were in the same radiation class last year. I am sorry to see your results this year.

I am glad to see you are working to get a second opinion at MD Anderson. It is worlds apart from local facilities. It treats the cancer and the patient. They provide each patient with a Patient Advocate and a social worker to help with communication and costs. They provide mental therapy as a courtesy. They also offer a treatment plan where you can do some of your stuff at home under the MD Anderson standard of care to allow you to do some care at home under their guidance and direction to alleviate some of the travel. They do it to make it easier for the patient. I didn't understand that was an option when the Oncologist mentioned it until my Patient Advocate explained it to me. I do my monthly injections at home to alleviate the once a month travel and my local facility shares everything with MD Anderson. I also bought MD Anderson t shirts to wear to every monthly appointment for my injections at home. I no longer question or fret my care now. What I received at MD Anderson was peace of mind and trust in my care. That is worth its weight in platinum and gold.

I hope your treatment plan comes quick and you receive good results. You are in my thoughts and prayers.

Waves2Stars

It feels like it is taking forever to get a consult at MD Anderson. They assigned me to the breast department, but path just officially ruled the brain and lung to be non small cell lung cancer. So now my request is going to be reviewed by their thoracic dept. There were so many mistakes made at my current treatment center, even today, and the level of unprofessionalism is unreal. That is with my family all helping to get information and asking questions! I can’t imagine how horrible it would be to have little support or be going through treatment while dealing with administrative mishandling! I will probably begin treatment where I am while I wait for MDA to come though. My first round of chemo will be eight weeks since I was dx with the brain tumor. Maybe that is a normal time frame, but I’m scared.

wondering44

wave2stars,

It does take time for MDA to get everything together. It is because they are very thorough to review to get you the right treatment and the right Team. It took me a few weeks to get to that first visit. It was difficult to wait. I considered not waiting and not going since it seemed to take an eternity. I am glad I waited. My first visit I met a tech, nurse, PA, then the doctor at appointments. They all check each other as you go through everything at the appointment. The biopsies are done the same way with a team of people doing the biopsies and reviewing the results to make sure you are treated correctly.

Sending hugs your way while you wait. May you get the right treatment moving forward.