Just when I was starting to feel a little better

bc101, I am so sorry that your having to face another surgery. I cannot give any advice as I had a lumpectomy...the only test I had after lumpectomy was a Pet scan...no MRI or CT scan. I assumed it was because I had so many lymph nodes involved & focal extranodal extension. I am guessing your status would not change, they have been in there twice, so this is just to get the rest. Will you also have chemo?

I also have cabin fever, and fatigue. Everyone on your list will love your homemade gifts...Take care & keep us posted...

pipers, I second what the others have said -- the bone scan is most likely to establish a baseline. Also, when you said that you feel like the octopus has grown, I was remembering back to my MO telling me that lobular tends to be pretty slow-growing. So try not to worry, and hang in there till you get your Dx!

Off-topic, but I'm originally from Missouri myself. Born and lived as a little kid in the SW corner then moved to STL. I keep current with happenings in STL through my Facebook Friendsas a little kidback home, and it sure sounds like you got some nasty winter weather. :-(

Pipers, the scans are to make sure you are NOT stage IV. A responsible doc should do these scans before settling on a treatment plan. I had them too. It was scary, but they were clean.

As for the ovaries, there are pros and cons to yanking them. In my case, I was 48 by the time I finished chemo, surgery and rads. I was close to menopause anyway. My mom has had ovarian cancer. There is evidence that in ILC, the AIs are more effective than tamox. In order to take the AI, I had to be in menopause. The cons have to do with cardiovascular health, and there may be other reasons not to yank them. For me it turned out to be a win-win, because they cleaned up a bunch of old adhesions in the process. Talk to more than one doc about this.

Ok, I'm getting a bad feeling now. From the beginning, my Dr. spoke against having these scans. He claims they show too many false positives, can't pickup microscopic cells, and shows a lot of other stuff that isn't cancer. The clinic is affiliated with an NCI designated cancer center at a university breast clinic. Considering that the lumpectomy and re-exicion could not get clean margins, I'm concerned that he should have even tried it in the first place. I'm now slated for a BMX and ALND soon and will probably opt for reconstruction. I'm worried about getting all the cancer and as soon as possible. The 2 pathology reports after surgeries could not stage my tumor because it couldn't be accurately measured -- from what I read it is multifocal and widely dispersed. Should he even have attempted it in the first place?

Oh gosh, thanks, vlnrph, for the reassurance! I'm taking deep breaths....also some Xanax. I was good for awhile there....even went out shopping, but now I'm really freaking out. My BS's nurse just told me that he is going to be out of the country during the middle of January. They are working on my surgery date, but doesn't know yet if they can schedule my BMX before he leaves! Huh?! I think I"m going to need something a little stronger than Xanax!

Holeinone,

I just emailed my BS's nurse something to the effect of, if he can't get me in before he leaves, is there someone else there who can do it? I also mentioned that I would go to my local cancer center and try to get in there, if that's not possible. I don't know if I'd really do that, but I will be making some phone calls tomorrow for clinics I'd consider switching to. I'm just really tired of this merry-go-round it seems like this has gone on too long and I want to get it out of me, even if they say it's not urgent... blah blah blah. Well, it is for me!!!

:-)

Hmmm.........I have a large uterine cyst, too. It's been there for years not really doing much. I'm wondering if I should have my ovaries and the cyst removed, too. I'm going to ask my MO at my next visit. Which happens to be Christmas Eve. Maybe I'll bring her a present

Piper - they can mess up on the tumor size, so don't let that throw you.  Besides, I am told it isn't the size of the tumor but the grade of the tumor.

My initial breast biopsy report came back with 4 tumors, one of which was in situ, with the largest tumor being 2 cm.  They were wrong!  After my bi-lateral mastectomy pathology report came back, it was noted that the largest tumor was only 17 mm, a huge difference from 2 cm, don't you think?  Also, before my surgery, my oncologist said he guessed my cancer would be staged at a 2b or possibly a 3.  After surgery, I was staged as 1A.  My point is, until the tumor or tumors are removed, doctors really don't know for sure.

Overall, I think I am one of the more blessed ones in these rooms.  I had a bi-lateral mastectomy and reconstruction at the same time.  I am one month post surgery from having my temporary girls replace by the permanent ones (they are AMAZING).  My only treatment, post mastectomy, is hormone replacement therapy.  No radiation or chemo in my near future.  Odds of recurrence are 7%.

Some key things I have learned on my journey:

• Careful reading the internet.  Full of great information, but many times different sites contradict each other.  I found it created more confusion and stress than it helped.
• Base your decisions and your actions on WHAT YOU KNOW, not on what you fear.  I learned this lesson from a co-worker during my journey and it has saved me from many useless, stressful pity parties along the way.
• Breast cancer is a roller coaster ride and I know I still have ups and downs coming my way (quarterly scans, checking for recurrence, every unexpected bump anywhere will be treated with suspicion).
• Make sure you have a medical team to help you and support you during your journey.  I don't mean that all your doctors need to be from the same practice or clinic.  I mean that they need to communicate with each other and recognize that fighting breast cancer is a team event.  I have the best medical team a girl could ask for.  My primary doctor and my surgeon are from the same clinic, but my oncologist and my plastic surgeon are not affiliated with each other or my primary doc in any way.  Yet all of my doctors continue to communicate with each other on a regular basis. 
• Case in point, when I went to see my PS for post final girls surgery visit, I asked him to check a lump I found under my arm at the site of my lymph node biopsy.  He did and didn't think it was anything to worry about, but recommended that I see my surgeon.  My surgeon and my oncologist had notes about the lump later then same day!  When I called to schedule the appt. with my surgeon, they already knew about the lump and my concerns (turns out it was only fluid in the cavity left after the lymph node biopsy - common and should go away on its own in a month or so but I can have it aspirated if I so chose).  My oncologist's office called and asked me to give them a call as soon as I saw the surgeon.  Bottom line...they all knew and I didn't have to say another word.  That, ladies, is a team approach.  And it has been this way since day one.  I even told my surgeon how much I appreciated the fact that they all kept in constant communication with each other and he was a bit surprised that I found it to be unusual.  Paraphrasing my surgeon, "when dealing with a disease as serious as cancer, it takes a team effort to battle the disease.  The patient and every doctor associated with the patient's care is part of the team....for the rest of their life".  How cool is that!!

BEST OF LUCK!!  YOU GOT THIS!!