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

BaldEagle: I agree with what others have said. I would ask my MO for a CT/PET Scan, especially since you had two positive lymphnodes.

I had lymphnode involvement and had a CT/PET Scan before my treatment started. Found out I have liver involvement while waiting at the hospital to get my port installed.

I know that my insurance covers second opinions (I got a second opinion from a BS just to verify what my BS said, whom I saw before I met my MO), you may want to call your insurance co. and ask. I am glad I did as I viewed it as a kind of "surgeon shopping". They both told me the same things but I connected with the first BS better than the second. It gave me more confidence to go forward with the team I selected.

Superfoob, are you BRCA 1 or 2? I see you had an oopherectomy which I will have at the same time I have implant surgery, probably a couple of months from now. 

Based on what you all have written, with my risk factors (TN, BRCA1+, lymph node involvement, etc.), I think I'm a perfect candidate for some type of scan. Which one will give the most accurate results?

Baldeagle: No, I am not BRCA+. I don't have a family history of BC other than my Great Grandmother who got BC when she was in her mid-80's and seriously, who doesn't have something by then? She didn't die from BC. My only risk factor for BRCA testing was my Ashkenazi Jewish heritage.

I had a robotic laprascopic bilaterial salpingo oopherectomy (say that 3x fast) with the DaVinci Robot Machine. The worst part of it was the gas they put in your belly so they can see everything inside more clearly. It lasted a couple of days and felt icky. Other than that, I have three tiny incisions, one on each side and one on my belly button. I asked if I could get my ovaries in a jar and they said no...that they slice and dice them to check them for occult disease (negative....yeah!).

Personally, I think a combined PET/CT Scan is the way to go. I have had 5 or 6 now. The PET part shows "hot spots" (ie: SUV [sugar uptake values]) while the CT part correlates whether or not those "hot spots" match up with a solid tumor. For example, I had a scan done whilst in the midst of getting my Radiation. My foob, side and clavicle "lit up" with hot spots, but none of them correlated with tumors on the CT. Those hot spots were determined to be "metabolic brown fat" activity associated with post surgical healing or something to that effect. Nice to know we have "brown fat". Yummy. My next scan after that came back clear everywhere. Phew...a reprieve for now.

Maybe that was all too much information or too long, but hey....I'm at work and don't feel like working.

The LBC= Long Beach City which is now called Long Beach, CA.

Baldeagle & Cynthia~ It is my understanding that they DO use tumor markers more frequently in later stages as the reliability increases.  Certainly Baldeagle, you should have some scans for baseline information, if for nothing else.  My onc is not necessarily a true believer in running tests every three months (I am stage IIb) but I have had CTs (2), a PET, and a "baseline DEXA so far. 

If you like your onc. you may not necessarily have to switch but a collaborative conversation may be beneficial.  If he/she still doesn't agree than you may need to look elsewhere.  The way I understand it, our oncologists will be with us forever.  I believe it's VERY important to have a good and trusting relaionship.  I am only 9 months out  from diagnosis and switched my oncologist after 5 months.  I am SO glad thatI did!!!

Good Luck & keep us posted!  

Learnin - what is the definition of "significant nodal involvement"? Also, the scans wouldn't be for staging but rather for NED determination. Would that make a difference in the recommended protocols?

Hi ladies. I had an appointment with my RO this morning and I am now terrified. I was dx'd in February, had a BMX, then AC and Taxol, now RADS, starting Tamox next month. My PET scan (after BMX, before chemo) was clear - no mets showing. In June, after starting Taxol, I began to have a tenderness in my rib area, not really pain, not even enough to take a tylenol. Just feels kinda bruised or sore (maybe not a good description). After a few weeks, my MO ordered rib detail x-rays. The x-rays showed a "possible" hairline fracture, but also a small sclerosis. I had no idea what that meant, but the MO said, just degenerative, no reason to worry at all. This morning, I saw my RO. He had seen the notes in the chart and asked if it ever resolved. I told no, it was about the same, not really bothersome but if I turn a certain way or poke on it, I can feel the tenderness. So he sent me for another rib detail. He said the spot is still the same, has not grown any, but is not going away, and because I have some tenderness, he wants to do further imaging after I finish RADS. So now I'm freaking out. A friend in my office, who had BC initially in 1998, and has essentially the same stats as me (Stage IIIA, ER/PR+, HER2-, 4 nodes, except hers was Grade 3) said she has a spot that has shown up exactly the same way each time she has been checked post-chemo in 1998 and is still tender to the touch if she turns a certain way or pokes on it somehow. Her MO told her it was a place where the chemo had collected in sort of a pocket and caused some damage to the bone. He says it is very common and nothing to worry about. That helps me some, but I'm still scared. I love the fact that my RO is cautious - wouldn't want him to be any other way, but I was not worried about this until he was. Any thoughts, anyone?

lanagraves, are you doing rads or did you do rads?  That can cause rib fractures and pain, and of course, healing tiny fractures will show up positive on PET, CT, and bone scan.  Rib fractures usually heal up well, just can be a little painful for a few weeks if you go poking around on them!  Hope yo can relax a bit.

Lana,

I have some general chest wall/rib discomfort on the radiated side. RO tells me it is a normal SE. I thought it was my nerves "waking up" from my BMX surgery. I still don't have much feeling on either side although some has come back. I don't have the same kind of pain on the un-radiated side so he may be right about the radiated parts...I'm not sure this has helped you at all since your pain started before rads. Is the pain on the radiated side?

Baldeagle,

I checked the Cancer.Net What You Need to Know  page and the 2006  follow up guidelines are listed as current. There are some newer guidelines for bone modifying drugs for breast cancer.

My MO has also said that they only do follow up scans if patients are symptomatic.  This was also part of the Survivor Treatment Plan that she put together for for me using the materials at http://journeyforward.org

All the best

I don't know how to say it.

My dear wonderful woman. February last year, she was diagnosed with breast cancer, exactly within the year she got plearal metastases and lymphangitic carcinomatosis (lymph nodes in the lungs, which blocked with cancer cells. Tumor embolism in march (tumor cells that blog the aorta). In may metastases in the central nervous system and on May 28. she's dead. Her suffering I can not explain, it was huge and my loss is big. She was my first love since I was fourteen and she always will be. Together we have tree children (11, 7 and three) I'm from the Netherlands (so my bad english is therefore).

 By day I am busy with the children and the household, in the evening and night are the ghost. All those memories and images that occur in my head. I am als very lonely and I'll do this kind of crazy things than (this piece of writing).

 Recognize the stages that you go through, give you all the best hope I have.

 Live now without fear, because fear does not change fate, but it changed youw way of live. Not everyone goes, my wife was unique in everything. No one as strong as she, no one so special for me. 

 Can somebody help me to unsubscribe this account?  

Bald eagle - I was getting my info from UpToDate.com - a source widely used by health professionals throughout North America, or even the world. It summarizes research, guidelines, and consensus about most areas of medicine, complete with references and abstracts. If you are interested, I can send you the most relevant article - PM me with your email address.



The other source, as you mentioned, is the NCCN guidelines. For imaging, both at baseline and follow up of stage I - IIb breast cancer - if I interpret them correctly, they recommend only symptoms, abnormal blood work, abnormal physical findings etc. You can download a free NCCN app for iPhone with all the NCCN guidelines from the app store. You have to register with NCCN, but it is free.



Having said that, sometimes a doc will agree to do extra testing just because you want it for reassurance, provided you understand the risks of false positives. Since you are triple negative, I get that.



So do your homework, and then if you still want something, you will be able to have a well prepared conversation with your doc. Keep us posted.

Hop on over to the "Calling all TNS" thread as we ALL have TNBC over there & there is tons of information to be found, specific to TNBC. Bright blessings to you!

Paty, yes, breast cancer can recur in the skin, and it especially likes the scars from previous surgery. They can be removed for local control according to my BS. She seemed pretty nonchalant about it (but then again, she has been pretty nonchalant since the beginning - it's not HER body she's chopping on!) but didn't seem to suggest this is progression, but merely local recurrence.