mets to the Clivus and occipital bones in the skull

delarmer

My mom (age 66) was diagnd with bilateral breast cancer in Nov 2007. Jan 2008 was in lymph nodes, now has mets to hips, ribs, spine, and breast bone.  Last week she had a fall with neuro changes. Her MD ordered a MRI of brain where it showed brain clear, but cancer in Clivus and occipital bones in skul.  I have researched the bones but can't get any answers on prognosis or what to expect.  We see the oncologist in 2 days.  Any suggestions on questions i need to ask. If anyone has any similar situations they would like to share, I would love to hear them. Thanks you all for your courage and strength!

dlb823

delarmer, I'm so sorry to hear about your Mom's progression.  I just wanted to suggest that, in addition to posting where you have, you may want to re-post your question in the Stage IV Forum (click on Forum Index above and scroll down until you see it).  I think women who are dealing with or have dealt with a similar diagnosis will see it there sooner than they will here.  

Good luck.  I'm sure you'll get plenty of support and treatment option ideas from some of the Stage IV gals.  Deanna

delarmer

Thank you Deanna! I posted there, too!

QueenElizabethTheFaux

That's what I've just been diagnosed with, via PET. Know this is an old post, but still wanted to reply. (There are a plethora of other lesions in my skull, but the Clivus & Occipital bones are quite damaged by the bc mets.) Came across your post bcuz, after 2 radiation treatments, I experienced a few incidents of severe migraine pain and a few unusual, short episodes of hearing and visual abnormalities.

Haven't been able to speak directly to the Radiation Oncologist yet, so I refused to do treatment #3, of 10. However, his RN claimed my symptoms must have been due to something else, like misalignment of the crystals in the skull. Baloney...I know it's due to the Rads & have now found several published scientific research papers online, to confirm.

Still reading them. I don't want to chance permanent hearing or vision loss, regardless of losing a couple of weeks or months off of longevity. Btw, I don't have much time left...but my family's been down the "Wrongful Death" & "Medical Malpractice" lawsuit road before, for my Dad. This time, there are numerous Doctors who need to be sued after I die & I'd already started a "Case File" a couple of years before my 2015 BC diagnosis. (Bcuz I felt I was dying from "something" & I was right.)

Even my current GP, his RN's and several members of my "Accredited Breast Cancer Team," the Hospital and my Insurance Company have screwed up something every time they'v done my biopsies, surgeries, chemo, radiation, pain management and Ins Co refusal (of my multiple requests) for authorization to have a PET scan. So, on behalf of all women like me...and those who may be affected in the future...I'm grateful to have this opportunity to build my cases and force change.

Hitting them in the pocketbook$, via malpractice insurance, suing/freezing each one's personal assets & putting sanctions on/or retracting their licenses to practice, are THE #1 ways to force change and rid our Health Care System of lazy, unqualified Practitioners. If that stops a few future "potential" people from pursuing a medical career, so be it. (One must be prepared to face their fear of making a mistake & learning from it in many career choices...& this is one of them.) Xoxoxo

FujiOop

queen - my mother has cancer lesions on her clivus. Her onc hasnt even mentioned it to her nor has he ordered a brain mri...

The reason i know of this, is i have access to her petscan n report online. My mom does not. So im wondering why her oncologist wouldnt even mention it?

QueenElizabethTheFaux

FujiOop, That's a good question. My Clivus mets caused terrible migraines & I was hospitalized for 3 days. (No one could figure out what was wrong w/me, so they blamed the dentist for 2 & 1/2 yrs...until I finally got authorized for a PET this year.)

Afterwards, for 3 months, I couldn't even get out of bed for more than 30 minutes a day, during the first 6 weeks. Gradually got better, until 6 more weeks passed by (too slowly!) But the pain returned...& I finally got the PET that I'd been begging for, 2 years earlier.

The Clivus mets were trying their best to "eat" a hole right thru that section of my skull bone. 10 radiation treatments later, + a dose of daily Letrozole, stopped those cancer cells in their tracks.

It would be worthwhile to ask the Radiation Oncologist, or her Chemo Oncologist, what they plan to do about it. (Not sure if that exact scenario could ever happen to your Mom, but I'd contact whomever ordered the PET & get some straight answers, if possible. Otherwise, a certified letter would suffice.

Sincerely,

Queen Elizabeth the Faux

PS. I'm glad you have access to her on-line records. Do make sure you're on her list of family members who are authorized to speak to the Cancer Drs on her behalf. If you're not on the list you can have an authorized family member speak to the Dr. about it. (I'd sure like for you to be on my list, if you were my daughter, since you obviously carefully check up on her tests & progress. Gone are the days we simply left things in the Drs hands. Medical errors are the 3rd leading cause of death, in the United States.)