Angry at doctors! Will not call back. Need Chemo ASAP!

Hi Aliceisalive,

I am so sorry your mom and family is going through this difficult time!! I was diagnosed in Aug 2014 with IDC 3.5cm grade 3 breast cancer, ER/PR+ Her2-, I did not have chemo until Jan15, 2015, but did have a bmx in Nov 2014.

I completely understand the fear/anxiety this cancer causes with all the waiting. I too was/still am worried about microscopic cancer cells floating around in my body. I too did the cannabis oil while waiting for treatment, as did my husbands grandma/grandpa when they were diagnosed with their cancers.

Your mom and you will be her best advocate, the one thing I learned during my treatment was I had to stay on top of everything, make phone calls to ensure tests, referrals we booked in a timely manner.

Did your mom have any other scans (MRI, PET scan, etc) to determine if lymph nodes were involved? I was told that bc of my age (30), size and grade of tumor it was aggressive but because there was no lymph node involvement it was an "emergency case" to get me into chemo before Xmas.

I know I'm not of much help but that was my time line, I hope your mom is able to get in soon and get a treatment plan started!

Teri

I honestly am not too sure if it is abnormal as it seems to be each practitioner is different in how they do things. Once I was diagnosed from the ultrasound / mammogram / core biopsy and met with my BS to discuss surgery options. It was she who ordered the MRI. Most of the ladies I have talked to have had an MRI, if doctors are concerned the cancer may have spread will order a PET scan. I have asked for a PET scan to put my mind at ease but have been told it's not done on my stage as it is unnecessary test that I don't need to be exposed to.

It never hurts to seek out a second opinion as this is your moms life, she will need to advocate for herself to ensure she is being heard and getting the treatment she needs/deserves in a timely manner.

Wishing you and your mom the best!

Teri

Just want to add that before your Mom has chemo they will order some additional tests.

Labs will most assuredly be drawn closer to the start of chemo to make certain that your mother's levels on each test are appropriate to undergo chemo. Mine showed low iron about 3 weeks before I started. I chose to ingest all sorts of iron rich foods to get that back to where it was to be. Others choose iron supplements. That's just one example of something that might show up.

Depending on the chemo, they will order a MUGA

"A multigated acquisition (MUGA) scan creates video images of the ventricles (lower chambers of the heart that hold blood) to check whether they are pumping blood properly. It shows any abnormalities in the size of the ventricles and in the movement of the blood through the heart. Other names for this test include cardiac blood pooling imaging, nuclear heart scan, nuclear ventriculography, and radionuclide ventriculography.

Some people with cancer who receive chemotherapy or other drugs may need this test before cancer treatment to identify preexisting heart conditions or during or after cancer treatment to identify chemotherapy-related heart damage." Cancer.net

I did not have neoadjuvant chemo - so I cannot speak to that. It seems like a second FIRST opinion is probably warranted with your mother's case - since you are not able to get in as soon as you believe her condition warrants.

Who is the doctor that ordered the initial tests that found her breast cancer? Her gynecologist? Her internist? Her primary care physician? Which doctor's office called and told her to get in as soon as possible? You can most definitely start there.

I will also suggest that your mother needs (if she has not already done so) to get complete copies of all records and results surrounding this diagnosis. She needs this for her records and armed with these results, she will be able to provide them immediately to the oncologist she chooses. (I'd suggest taking them and hand delivering them.)

One more thing - appointment schedulers cannot always get you in asap - but nurses and doctors can. So it really is imperative that you are speaking with the diagnosing doctor and having him/her advocate on your mother's behalf for an EARLIER appointment. Nurses and doctors will have access to openings that the general scheduler will not.

Diana

Edited to add: Seeing a dentist to ascertain good dental health is also usually scheduled.

Hi Alice,

I am so sorry to hear about your mom.  I know you both must be really scared right now.  I have to agree with Beachbum ... see if you can find another oncologist and get a sooner appointment.  Are you able to travel at all?  Sacramento isn't too far from you and may have a cancer center at one of the major hospitals.  It sounds like you aren't getting much of a response from your PCP either.  That's very frustrating.

Also, as all the gals wrote, it's very important to keep a record of all the reports, tests and office visits.  You can request copies of all the reports and keep them in a notebook.  It sucks that you have to be so vigilant about the care your mom receives right  now ... when you're overwhelmed and afraid of what's going to happen.  Your mom is fortunate that you can help her navigate through the coming weeks and months.

Best to you both,

Bren