Many Blessings

Hi all: I don't normally post, but read as much as I can from this site. I was diagnosed 04/01/03 as Stage 2, Her2+ (5 minutes after my grandson was born). I had a mastectomy, chemo, and am currently on Tamoxifen.

But the blessing is how this site helped my husband. In November of 2004 he had a stroke, a few months later a heart attack, and then a seizure. I felt he was doctoring in pieces and insisted on new doctors. Through the excellent work of different doctors through the Cleveland Clinic he was diagnosed with a brain tumor. When he had the brain biopsy, they said they couldn't operate, but would do whole brain radiation. We went through the radiation process and then did the Gamma Knife. Thanks to this site, I knew how important Gamma Knife was.

During this time, his doctor told him not to drive. Between this and the Decadron he was a barrel of fun. But now the good news.

Although a hurthle cell tumor was found in his thryoid, it is not the primary cancer. After pet/cat scans the oncologist said that the cancer in his body cannot be detected, it is microscopic. So after being Stage IV, my husband will go back in 2 months and get restaged. I wasn't aware you could go from Stave IV to another stage. Has anyone else heard of this?

The doctors and I never expected that things would go his way -- he was such a mess. As a matter of fact, now that he's doing better, the doctor wants to talk with him about his triglycerides.

Thanks for everyone's input.

[Lolly]

Hi Vi; first of all, kudo's to you for being a survivor and such an effective advocate for your husband in his time of need!

Your question about staging is a good one; I found an informative site from the American Cancer Society and have posted the link for you, followed by an excerpt that hopefully answers your question:

Staging
http://www.cancer.org/docroot/ETO/content/..._2X_Staging.asp

A Cancer’s Stage Does Not Change

"An important point some people have trouble understanding is that the formal "stage" of a cancer does not change over time, even if the cancer progresses. A cancer that comes back or spreads is still referred to by the stage it was given when it was first diagnosed.

For example, if a woman was first diagnosed with "stage II breast cance," but the cancer now has spread to the bones, the cancer is called "stage II breast cancer with recurrent disease in the bones" (if the cancer went away with treatment) or "stage II breast cancer with metastasis in the bones" (if the cancer never went away completely). This is not "stage IV breast cancer". A stage IV breast cancer refers to a cancer that has already spread to a distant part of the body when it is first diagnosed. A person keeps the same diagnosis stage, but more information is added to the diagnosis to explain the current disease status. (The treatment of a stage II cancer with metastasis and a stage IV cancer may be the same, however.)

This is important to understand because survival statistics and treatment by stage information on specific cancer types refer to the stage when the cancer was first diagnosed. The survival statistics related to stage II breast cancer that has recurred in the bones may not be the same as the survival statistics for stage IV breast cancer.

Sometimes, after a period of remission (cancer being undetectable) for certain cancers, if more treatment is planned, a doctor might restage the cancer. This will mean going through the same process that was done when the cancer was first diagnosed: exams, imaging tests, biopsies, and possibly surgery to restage the cancer. If the cancer is restaged, the new stage will be recorded with a lower case "r" before the restaged designation. This is not often done."

Hope this helps,
Lolly

Lolly that was exactly the information I needed on restaging.. Thank you so much not only for this reply, but for all your input with everyone else....We all read the posts and benefit. Be well.

[StephN]

Vi - SO happy to hear that you hubby had such a good result from his new medical team - thanks to your persistence.

I also have a husband who is being watched for a lung nodule. It is outside the area where they can biopsy - too far away for the bronchoscope to get it and under a rib bone. The PET/CT was negative for glucose uptake so they just check it now every 3 months. It was at my insistence he get the tests as he was coughing for too long!

The "restaging" question also came up for me. When I went for my 3rd PET scan the technician mentioned being there for "restaging." I found out he really meant something more like "reassessment" since I was Stage IV already. Just means that since one of my markers was elevated they were looking for the cause. Found it in my brain, but you may recall my story of last Jan about my Gamma Knife, etc.

So, it seems that each time we have a new development in our disease, we are actually "restaged" since all the testing and analysis is done again to pin it down.

StephN -- thanks for your input....I do remember the Gamma knife info from January...Like Lolly, you add so very much to this board and it's so helpful. Thanks for the good wishes for my husband.

I'll let you know how the restaging goes in a few months.