LibraGirl

This is less likely to happen in a major centre but can still happen.  I had to wait 5 mos between mammo and ultrasound for a palpable lump. I was told that there was a shortage of ultrasound technicians at the time.  I have met some bc patients in my area who had the same wait but others who were seen much sooner. 

If you haven't already, check that the ultrasound lab does understand that your physician feels your case is "urgent".  It's possible this info was not relayed or was miscommunicated.  If this has been taken into consideration but you still have that long wait, I agree with the previous posters, go back to your physician and see if there is anything else that can expedite things.  In hindsight I think there was much more I could have done to get seen faster (like telling them I had a family history for starters).

Hi Trigeek

Your friend is lucky to have you helping her along on this unwanted journey.  Best to both of you.

I'm triple positive too (Er+90%, PR+80%, Her2+++).  I was Her2+ with both IHC and FISH (6.5 highly amplified).  I had lumpectomy, reexcision, 4AC (A = Andriamyacin or Doxyrubicin + C = Cytoxin or Cyclophosphomide), then Herceptin, which I will be on for a year.  I just had a bilat mastectomy due to my margins being clear of IDC, but not DCIS.  Decided to have prophylactic on other side due the fact mammograms failed to find the cancer likely due to breast density.  Left mastectomy had clear margins and right was completely clear, so no rads for me (Yay!).  I will be starting Tamoxifen in December.  

I wanted to be as agressive as possible too, but wonder if I got the right chemo.  It seems the use of anthracyclines (Andriamyacin) is on the way out, due to the fact that other drugs now seem proven to give as good or better outcomes with less harmful side effects. At the time of diagnosis, I just accepted my oncs plan without doing the research (this was before I had really begun to come to this site) and only became more proactive once chemo was underway.  Thankfully my mugascans have been excellent so far.  I also wonder why I didn't get a taxene; I had assumed these were given more for stage 2 but I see that several of you had taxotare or a taxol. I am trying just to let this concern go, for it is water under the bridge now.My onc is head of the tumor board here, so I have to trust that it is a good plan and remind myself that I am doing everything I can to kick bc in the butt.

Has anyone come across any research specific to triple+?  I would love the links to any info you have found.

Postive vibes to you all.

Yup.  I think people just don't know what to say so they reach for anything that remotely relates instead of just listening to how you feel about your experience.  I think we are all guilty of doing this in different situations, but it is stinging when it happens in relation to such a life-altering experience as breast cancer and mastectomy.

I had a bilat with expanders about three weeks ago (this after lumpectomy, reexcision, chemo).  My mom was here to help me through while I was incapacitated.  Now, my mom is also a BC survivor - 3 years.  She had chemo, lumpectomy, and rads.  She lived in another part of the country and went through most of her treatments on her own (dad didn't know how  to help; my brother and I each spent a week with her), so I realize  she needs to talk about her experiences and probably feels like it is a way for us to connect and maybe give me comfort.  Still. The day I got my dressings off, it turned out my left foob (or "noob") was very swollen with fluid/hematoma.  Even so, I was handling the reveal better than I expected.  I was  more concerned about what might need to be done because of the swelling.  I said to my mom, perhaps too lightheardedly, "my left boob is 3x the size of my right one" and she said "Oh, I know what you mean . . . mine (the one with the lumpectomy) has been bigger ever since and I don't know why, isn't that wierd?"

I didn't, couldn't, say anything.  In my head my jaw dropped.  A week prior I had had all my breast tissue scraped out (or however they do it) and my nipples removed and she was saying "I know what you mean . . . ."?   I was hurt and furious and mulled about whether or not I should talk to her about it.  I sat on my feelings for awhile.  Then, the next day when I was changing, I asked her if she wanted to see it, and surprisingly she did.  She got teary.  I can't say she hasn't still made some compariesons between our experiences (and of course there are *some* parallels) but she has been a much better listener since then.  

Girlmace, immediate 350cc implants!?  No wonder you're in pain.  No fair.  How do these things happen?  I had a smaller gaffe happen - my anethesiologist forgot (?) to order my post-surgery pain meds, so i came too on nothing and the nurses couldn't give me anything for an hour until the order for morphine went through!  It hurt me even to breath.  But at least that was only for one hour. 

Good luck with your ps tomorrow.  What other surgery are you having?  Why so soon?  Surely you deserve a break!

Girlmace, when do you see your ps again?  Is it normal for the vicodin to take that long to kick in?  Maybe you should ask about a different medication?  Is your pain from the fluid/swelling or from the expanders?  350ccs sounds like a lot.  How many expansions have you had?  Could these be slowed down so you have less pain? 

I had a bilat and expanders put in and have been dealing with regular aspirations (and one surgical evaucation) too, so I understand some of your feelings for sure.  I've been visualizing myself in the future, looking back at this period of my life, when its well behind me. But it doesn't sound like vizualization would help much with the kind of pain your in. Even though your body has been through a lot, you shouldn't have to suffer so much.  There must be something your ps or family doc can do to make this easier for you.  You shouln't have to accept the kind of pain you're describing.  If it is as bad as you say, maybe you should try to see a doc sooner rather than later. Hang in there; you will get through this!

I hear you Joanne.

I have expanders and although my chest strength was affected immediately after surgery, it is starting to come back.  My ps told me that once fully recovered I will not notice any loss in muscle function.  This was extremely important to me as I am fairly physically active.  To me expander/implant recon seemed to have the least impact on overall physical functionality both in the short and long term compared to other types of recon.  I am eager to hear what others who have been on this road longer have to say on this topic though.

Hi again

Erindunn - I'm not an expert, but I think there are different kinds of ports, so that some can be used for blood draws while others cannot.  I had most of my blood draws through my good arm at first, but after awhile it would take 3 or more tries to get a good poke, so my last draw was through the port.  I had to go to the chemo unit to have a nurse do it; lab techs are not allowed to do central lines.  A much pleasenter experience!

I just had a bilat and expanders placed two months after chemo (I'm still getting herceptin).  My ps and surgeon weren't sure if they could work around the port so I told them to take it if it would get in the way of a good medical outcome (getting all/most breast tissue).  Lo and behold I woke up to find my port intact. It worked beautifully for my first H infusion after surgery.  In fact, because my chest has lost some sensation I did not feel the needle at all.  Maybe that is why some women who have it placed during mastectomy feel very little discomfort from the port?

Overall, even before surgery, my port has really settled down so that I really hardly notice it except for how it shows/affects necklines I can wear.   I really didnn't think that would ever be the cas, but am happy to report it is true.

So for those of you who are facing doxy- or epi- rubicin, or a year of H, the port is worth it and there is a good chance you will hardly notice it after a time.

Did you have immediate or delayed recon?  I think what you are experiencing if fairly common, though I know it is disconcerting at first.  I had 50 ccs put in at the time of surgery (bilat with immediate recon 2 weeks ago) and I have been getting the "electrical shocks" from time to time (none for several days and then suddenly several in a day).  I had heard, and assumed, that this is more from the mastectomies than the fills because of nerve damage caused by the surgery.  I wonder if the pressure of the expanders on nerves could also do this? In any case, I believe this is supposed to fade over time (though it could take quite awhile).  I'm sure some others further along can comment on this though. 

Your ps sounds like he is following standard protocol for fills.  50 ccs is what my ps will be doing with me, and the amount will remain 50 ccs throughout expansion.  This seems to me to be a fairly conservative amount, as on this board I read of many women getting 100 ccs at a time, although sometimes this seems to be due to either the patient's desire to "go faster" or for scheduling reasons (ps away, etc.). 

I had a bilat with expanders placed and was able to drive to my post-op appointment a week later.  However, I was off pain meds and going for walks by day 3.  I attribute my fairly quick recovery to being in good physical shape prior to surgery.  I have had to adapt my steering wheel style for sharp turns to compensate for less strength.  Shoulder checking is close to normal.  The most difficult thing has been releasing the parking break, so I have opted not to bother for the tiime being.  Overall, I am just a bit more aware and cautious than normal.  I agree with txgal, doing your exercises will help alot.

Hi all Hope Kranie, Robyn, Txgal, Texas357, and Firni all had smooth surgeries and that Momof3 and simvog have as well (and anyone I might have missed).  I had my bilat and expanders yestereday.  The procedure itself went well.  I was pretty calm by the time the day arrived.  I kept thinking about Dani telling her breasts that it was their time to go and finally really believed that.  I did have quite bad pain in the recovery room but this was only because the anesthesiologist somehow didn't write the order for the morphine, so I had to make due on T3s until I got to my room.  Then the morphine controlled the pain ands I slept well through the night.  Today I am just on T3s and feel remarkably well.  No real "pain" but definately soreness, tenderness, and am wearing the "iron bra".  I could have stayed one more night in the hospital but decided to come home since I was able to get mobile early today.  I have better range of motion than I expected (though I did not have SNB; had it done in May with my lumpectomy).  I can reach for and pick up most things to eye level.  I can pull my pants up and down to pee!  The drains aren't as bad as I thought although one of them isn't suctioning as well as the other and leaks a bit.  I am told this is no big deal and just to keep draining and priming it and add some dressing below the leak.  My homecare nurse comes Friday or Saturday.  So, overall it has  not been that bad.  I think emotionally, I did most of my crying last week and this week have been ready to just get on with it and move on.

I pray that all of you will have good results from your SNB/pathology/oncotype tests.  You will get through whatever you need to to beat this disease.  BTW, I had my tracer for the SNB the day before and do not remember it being too painful.  The comparison to a bee sting rings a bell, but I honestly don't remember.  It is amazing technology, so worth a little pain.

 Anyway, love and positive thoughts to you all.