If you are not Stage IV but have questions, you may post here

I had a chest wall recurrence as both my breasts are gone. Papillary Carcinoma is less than 2% of all breast cancers. VERY rare. So when my recurrence came up the same cancer, they knew for sure it was a recurrence and not a new cancer.

Keep us posted on your ribs, Astrid!

Astrid, I also have node involvement in my neck/upper clavicle and left axilla.

Hi Daczahow,

I soo hope the PET is right, and the MRI wrong. How awful to have to wait!

you have done everything right with treatment, yet still you had that supraclavicular node show up.Rotten luck. Let's hope it's arthritic stuff showing and not mets eh? Sorry no experience of this to offer, but just wanted to send love and prayers your way.

astrid

Daczahow. I Have hesrd many women here who have felt the PET trumps the MRI. I hope you are clear. The waiting is so hard. Keep posting. It will be all cleat for you i hope.

That sounds like good news for you kayb - about the driving part. My brother can still drive during the day time, so not sure what the vision issue is, other than he does have glaucoma.

Quinn, I believe it gives halos over all lights. As there are a lot of lights at night....

I guess I should Google before posting what must be a dumb answer, it's what I believe.

You lose peripheral vision with some eye problems and you have to see the traffic coming at you in the oncoming lane.

Astrid sorry you are stuck in the limbo of the waiting room !! We are all here way too often !! Hope they can get you in soon!

Barbe1958, I  just noticed your post on radiation treatment today, otherwise I would have responded earlier. The standard dose is  about 50 Grays in 2 Gray fractions delivered to an upper quadrant of the body. You may have had a slightly higher dose but certainly not 9 500 Gray. For comparison, a dose of 2 to 10 Gray over the whole body delivered in a couple of hours is lethal.

For those interested in radiation doses used in breast cancer treatment, here is the link: https://community.breastcancer.org/forum/70/topics/845654?page=1#idx_6

Barbe1958,  calculating the given and received dose in radiation physics is very confusing. There are number of units to characterize different aspects of the radiation sources and the beams, but even more confusing is how to determine the absorbed dose. Methods depend on the nature of the particles used for radiation, and the reaction of the tissues to this particular type of radiation. I would love to talk to radiation physicists who develop software for calculation of the received doses for radiation oncologists, but I do not know such people, and for me it would be irresponsible to post more detailed information  than I already posted  in "my take on rads" thread. I pulled the numbers from some publications, NIST, and Wikipedia to do these crude calculations.

https://en.wikipedia.org/wiki/Radiation_therapy

Hi folks, this is a fly by repost re: John Smiths post

A few seconds ago sas-schatzi wrote:

Folks I think John's link should be posted around in the threads you frequent.

1.Reason is most here have sleep problems.

2. It is a naturally occurring in the body

3. we need to use any thing that gives us an edge.

My personal experience with it is I used it for several years after BC @ the 10mg level along with Ativan. I had horrible insomnia. My ER+ path report said unfavorable outcome in two places. Always wondered why I haven't met'sd yet. Now 7 1/2 years.

I keep wondering if there was "something" I was doing that was helping?

Recent research is keying in on other things other than standard chemo drugs we need to keep these on our radar and make the decision whether they are reasonable to add to our regimen.

We all know it's still a crapshoot. I find that word the most disgusting word in the dictionary. So, this is an emphatic statement.

John reposting on my usual threads. Thanks for all the research you do.

18 hours ago JohnSmith wrote:

New article: Pre-clinical models reveal that Melatonin reduced proliferation of breast cancer stem cells in ER+ tumors.
https://blog.cirm.ca.gov/2016/08/24/sleep-inducing-hormone-puts-breast-cancer-cells-to-rest

TAGS: CSCs, transcription factor OCT4, encoded by the POU5F1 gene, mammospheres, Bisphenol A (BPA), MCF-7 cells

so interesting, thanks!

astrid

Hi all, I have a question for anyone with brain mets. I diagnosed in 2012 with Stage 1, grade 3, triple positive IDC. I just recently learned I have a 2.5cm solitary brain tumor in the area of my pineal gland, smack dab in the center of my head. Neuro-oncologist is trying to be optimistic that it's a benign pineocytoma, but with my cancer history (BC in 2012 and melanoma in 2000), he stressed that pathology is crucial to know what it is and best course of treatment. And I just learned from him that having been HER2+ puts me at higher risk of brain mets, which I never knew! So apparently pineal region brain tumors are rare to start with, but a mets to that region is also very rare...lung, breast, kidney and melanoma are most common mets to that area though. I won't know if it's mets or not until after surgery. I'm having a craniotomy to remove the tumor on Oct 5. I was curious to ask the brain mets survivors if anyone else had a solitary lesion, particularly in this area? Also, what can I expect for recovery from craniotomy? Neurosurgeon is going through back of my skull at the base, getting to the center of my brain over the cerebellum. Thanks in advance for any advice you may have.

I don't think I've read of anyone having a single met of that size. Usually they are scattered smaller ones. Did you get Herceptin? If so, it could be a benign tumour. My DH has 3 benign brain rumours. Had you had a clear CT and this growth is new? Many people find the have these lesions and never knew it. To be able to have it surgically removed is certainly a good thing. My DH'S rumours are too big and they figure he's had them for a long time. Best of luck, sweetie. We are here for you!

Hi Cat,

For pain control, my best healing allies have been holistic healing approaches, my palliative care team and now my hospice team.

There's a delicate dance in managing pain and managing the effects of treatment.

I appreciate my "cocktails" and my teams' dedication to how I feel!

Each of us is unique and I wonder how much good advice we can give you about your pain control.

Cat, maybe our stories and support will best support you now.

"Sad and alone" (as well as mad and scared) are common responses to huge upheavals like yours. Please be kind to yourself and accept our kindness too.

We've been there and have developed compassion through our own suffering...I hope we can help you feel like you've met understanding and supportive friends here.

sending warmest healing regards, Cat, Stephanie

Dear BosumBlues, hope that your Ortho orders a MRI. I am not a doctor, but honestly that is the only thing that will show if you have spinal cord/disc issues compressing a nerve that is causing the pain and loss of function. I had similar pain and it was a herniated disc at l3 l4 that was pressing on my spinal cord. My leg became so painful, I could not stand on it, walk nor lift it. The spinal cord was decompressed and the pain and los of function immediately returned. Hoping you get to the bottom of this quickly.

Hoping I didn't interfere on a thread meant for stage 4 issues, but when I saw your post and the type of pain you are having I had to share my story . Many  non cancer issues can cause the type of pain you describe Hope you are well. Good luck w your visits.