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

Nancy - What I meant is that that when a patient without cancer presents with pulmonary lesions they will often assume the lesions are not cancer. non-cancerous pulmonary lesions are the most common type. and my understanding is that non cancerous pulmonary lesions can come and go.

i have a pulmonary lesion and i have roughly the same thing going on as you.

it only matters if the lesions or absence of lesions are changing the mo's thinking on a treatment plan. Press him on that. if the lesions factor into the treatment strategy, then press him on why he things they are cancer. the fact they disappeared is not enough. get a second opinion, get another diagnostic.

in my case, they are not changing the treatment plan so i am ignoring it. there are so many things appearing and disappearing on my scans that my strategy is to keep my eye on the ball. the first question i have for my doctors is ... how does this effect the treatment plan?

if it doesn't, i forget about. if it does effect the plan, i make them confirm their diagnosis somehow. i don't trust scans. i've had more than the usual number of scans in a short period and the results are all over the place when it comes to little lesions and small changes.

i was also told the horse was out of the barn and the goal was to keep me healthy. i read all kinds of ominous things into that until i realized ... the goal is to actually keep me healthy. when you are stage IV your bodies ability to fight is the strongest tool available. and it is a powerful tool. there is even a name for it. it is called functional medicine.

for starters, there is an entire lab at memorial sloan kettering. their hypothesis is that exercise can have an equivalent beneficial effect as chemo. so if they are right, you need to think twice before you pursue a treatment that keeps you from running and doing yoga.

certainly wait and see is a very reasonable strategy.

>Z<

Scared67-wow. Good luck with chemo! How are you healing from your surgery?

So glad you are healing well, Scared67! It happened fast for me also. Are you going to do radiation also?

I just had a second surgery on Monday because of am infection. PS took out the TEs, washed me out and put in new TEs. I'm supposed to start radiation soon. I had chemo first.

Thanks Scared! Actually I am feeling much better now than prior to the surgery! It really is quite amazing. I was so uncomfortable, irritated (the breast incisions hurt) and just felt gross and now I feel so great! Thanks for asking!

Yes, it really is overwhelming. It's a long road. But hang in there...it is a lot but it is saving our lives!

My mother-in-law was just diagnosed with Stage 3 IBC. She had a lung biopsy today as they noticed a few spots on her lungs, so they think it's likely this diagnosis will change to a Stage 4 diagnosis once confirmed. Because she is 80 years old, they said chemo is not an option and neither is surgery. Although 80, she is in very good health and still works everyday. Her cancer is treatable with hormone meds and they hope to get some relief and hold the cancer at bay this way. She did not ask the doctor today what survival rates are, but we are obviously concerned and would like to have some idea what lay ahead? Does anyone have experience with Stage 3/4 IBC that has not had chemo? She is actually OK with the treatment plan as she really did not want chemo or surgery. However, I want to know just what this means. She feels and looks great except for a swollen arm. Any feedback is appreciated. This is such a scary thing! We're praying that the medicines are effective for a long time!!!!!!!!!!!!

Dear grandmaof3,

I read your messages on this thread as well as on the Stage IV thread. I'm not very computer savvy either, so I completely understand your confusion. I thought that I'd try to "talk" you through the process of entering your information:

After you log in, look at the top right of the screen. You'll see "My Profile". Click on it and it will pull up a page that has four areas for you to enter information: My Articles, My Diagnosis, My Treatment, and My Personal Information. Click on "My Diagnosis" and you'll see a list of questions about when you were first diagnosed, the nature of your diagnosis, etc., There are drop down boxes with choices of answers, as well as fill-in-the-blank responses. If you are not sure about a response, you can just click the choice indicating that you'd prefer not to answer, and it simply leaves that area blank. As you go through the responses, you'll be instructed to "go to next", or to "save and exit." After you've finished with the Diagnoses area, move on to Treatment, then to Personal Information. As you've already noticed, the information you entered and saved will be listed under your posts. However, I've seen many posts from ladies who choose not to share their information, so it isn't mandatory - just helpful to others to see your history.

I'm headed to bed right now, but will check back on this thread in the morning to see if you have trouble following my not-so-clear instructions!

I see that you've already received much good information and suggestions from many of the ladies on this forum. They will be such an incredible support system for you - regardless of your pending test results.

Best wishes to you,

Angela

Angela

Thank you so much for the information. I did everything. We'll see if it works after I post this. I am just so scared of getting the x-ray for possible bone mets. I guess with me I never stop worrying about the other shoe dropping. Thanks again.

Okay, I had to go to settings and make the information public. I'll see if it works now.

dlb823: Thank you for your post and your kind words. I have not been the same since my husband died. It absolutely destroyed me. My oncologist is the head of the Adjuvant Breast & Bowel Symposium at a major cancer center in a major city. It's at one of the nation's leading women's hospitals. I trust him. He told me that the most recent symposium he attended discussed the long term use of femara and arimidex. I was on femara for 10 years and asked him why not stay on it forever. One word: osteoporosis. It will cause it eventually if you're on it long enough. He said for those with more advanced breast cancer it can offer a 3% reduction in recurrence past the 10 years of use. But he didn't advise it for me (I already have osteopenia). He did say that femara and arimidex help prevent recurrence but don't affect metastasis so he knows that it can happen no matter how far out you are. I think he is just going with the odds that most mets happen sooner than 14 years.

Considering the severe and chronic back conditions that I have and the fact that I've had these pains prior to my breast cancer dx I am hoping for the best and that is very hard for someone like me who sees the glass perpetually half empty.

Thanks again for your reply and thoughts.

Squirrly -

I was diagnosed in January with a hormone positive breast cancer which is not super aggressive. I got several opinions. No one recommended chemo as a first line treatment. It doesn't work well on sleepy cancers. Standard chemo kills all growing cells. If your cancer is slow growing the treatment attacks your whole body as much as it does the cancer, and the cancer just continues to mosy along after the treatment. Hormone suppression therapy, on the other hand, is generally effective for a while. It seemed odd to me that the harshest treatment was not the most effective, but that is in fact the case for ERPR+ metastatic breast cancer.

The problem is that the cancer can evolve so that it will grow in the absence of estrogen. We're all trying to figure out if we can delay that with surgery, exercise, targeted therapies, green tea and broccoli. When the hormone therapies stop working, there are options but it's not clear what to do. Lots of debate and discussion. Many people do well.

>Z<

I prefer to try rainbows and unicorn farts, myself.....

Barb -

May I ask where you get your unicorn farts?

>Z<

None of my unicorns suffer from flatulence. You are very fortunate.

>Z<

rofl

Great news, grandmaof3! I'm really happy for you! Thanks for taking the time to stop by and give us the good news. I'm sure our experience will be encouraging to others in the future! Be well! Deanna

Hi All,

Well...I had a CT scan and the RN said it was "fine" and "no evidence of mets".

BUT left out the part about the 6 mm NODULE noncalcified (which is bad according to Google)found in my right upper lung and that a 3 month follow-up CT is recommended.

My breast cancer was in my RIGHT breast, so knowing I have a lung nodule on the RIGHT side - to me is BAD news.

I am so angry right now....and it's after hours - so I sent my oncologist a couple of emails...

Just REALLY pissed that she told me that my scan was normal - - when I could be facing Stage IV. I'm ready to leave that medical group and go to another. It is just WRONG to not be forthcoming to patients!!!!!!!!