To: AlaskaAngel

AlaskaAngel,

You stated below,

*****
“You can count me as a HER2+++, ER+, PR+ (negative nodes, 1.6 IDC and never had the FISH).”

“I'm 2 years out from all treatment and NED but am wondering about the weird feelings in the head of spots of pressure sensation that come and go. I've never been one to have other than rare headaches in my life. I've never had any scanning of the brain. I know that a number of HER2's have had brain mets without any symptoms at all, but are the symptoms I have at all more typical for brain mets?”
*****
Cyndi had no symptoms of brain mets, I just had a feeling. We had to lie a little for the Onc. to order the MRI. She had more than a dozen small lesions. She also had no symptoms of lung mets, by accident, they were discovered... too many to count. NED is great, just do not go to sleep. BE VIGILANT!

In my opinion, I think you should…..
Immediately contact your Onc. and insist on a brain MRI. You may have to stretch the truth a little, tell her/him that you have “Headaches and Dizziness.” The same is true for a body scan, you have “Shortness of Breath and Abdominal Pain.” Everyone knows you are lying, but with most insurance companies one must have symptoms before the doctor can order these expensive scans or tests. You are not lying for personal gain, you are lying for self preservation, which is every bit as important as the insurance companies denying for asset preservation. While you are at it you should press for the FISH test also, the lab still has your tissue sample.

If you are comfortable with the body scans and they are not over about a year old, you could probably skip that lie for now.

God Bless You,
ron

Thank you for the prompt response and the clear explanation. I've mentioned it a few times to other (non-bc) people and they responded that the pressure I've had behind the eyes sounds like sinusitis... etc. But they aren't HER2/neu positive. The pressures seem to happen all over the head, not just in one place.

I'm going to talk with my onc's nurse tomorrow.

Best to you and your sweetie,

AlaskaAngel

If you have ANY doubts or concerns, insist on a brain MRI. It is more detailed than a CT scan. I'm another who had brain mets with no symptoms.

Love and light,

Lisa

[StephN]

Hi Alaska!
Gosh! Did not know you had anything like you have just described - somehow missed that post.

As you and I spoke when we met here a while back, we are both the type who virtually NEVER have a headache. (My - that seemed oddly reassuring at the time, considering my main brain met was ALREADY growing!!) Only with a bad cold or allergy season did we seem bothered. I seem to recall saying that in order to get a brain MRI I would have to invent some arm numbness or such! Except that I already had an agreement with my med onc for yearly brain MRI after getting NED from the extensive liver mets.

Please check this out - as it is imperative to know if there is any cancer-related reason AND THEN go to the eye doc or someone else.

BTW - My friend just had a situation with a retina that was threatening to tear (or had a small one). She does NOT have cancer, but was seeing flashes of light. Her eye doc took a look and diagnosed the retina problem, which has taken care of itself without surgery as she followed to the letter some explicit instructions.

I hope some explanation will be found, but not always - "things just go away as mysteriously as they appeared" - a quote from my GP from a few years back.

Hello to all you lovely ladies and gents, my update is worth a minute for your own info and because I need immediate feedback PLEASE. After two months of headaches, alarmingly badly managed by GP here in UK, finally got a appt. for CT scan last Friday. The pain was sooooo bad that I stopped in at A&E which is Emergency before the 8:30 am appt. The 'nurse' said, "no my dear, if you had a brain tumour and cerebral aedema you would not be sitting here right now!" That cost me another 12 hours before I was admitted SCREAMING. CT scan done in the morning had showed a tumour - the onc had me in immediately. MRI next day gave picture of 3cm single tumour in the infratentorial section of the cerebellum which is NOT where a mets would normally be found. It' solid, with liquid inside and out. And guess what - bone scan and another CT scan show no evidence of disease.

Now I know what you mean by being 'wired' Steph, on the dexamethazone. One night awake entirely, next night 3.75 mg Zopiclone helped a lot. Pain is 100% gone now and I was sent home tonight because they have done what they had to do for the interim BUT the neurosurgeon at the Centre of Excellence here (where I have been referred wants to remove this tumour asap. ie. Feb 4, just from the info gleaned in the conversation with the onc. Not an easy decision. No idea if I will need permanent shunt or if I will be a veg by the time they get it out. Or what if it just means prolonging the agony of waiting for the next shoe to drop. PS I cannot fly anywhere so there is no option but do it here or not do it and then what?

I am a very fortunate person, all in all, and I have Faith and light and love too, but I'd like to hear some thoughts and maybe other options. This is an interesting example of the idea I found somewhere that HER2 neu +++ is perhaps NOT really a BC tumour, but just looks that way at first. Looking forward to hearing back and sorry if I have missed appropriate responses and congrats or condolences due to being off-line -(patient line system in hospital was not available or I would have been on for sure.

Wishing you all a daily reprieve from fear. Lovingly, Eccles