August 2014 Surgery

Great news, Ally!  I've decided it will be absolutely clear and it will turn out to be a nerve response from your surgery. And you'll know!

Thanks for the shout out imheretoo. Unfortunately rads is not the end for me. Ill be getting herceptin till April 2015. But it's ok. In a weird way I'm glad, I still feel like I'm fighting. How are you?????

Ally- woohoo!! My gut tells me you can put this all on Monday!! Rads are ok, 3/25 done. Got my car of eucerin and I'm not afraid to use it!!! Minoxidil is helping I think. 

Mil sorry for all you are going through with the docs. You have enough on your plate without all of that!

Ahhhhh the crying tantrums!!! I know them well!!

Imheretoo, you'll love this... You mentioned gorgeous clothes?  I also booked DH and I for a murder mystery dinner (with overnight stay) at a nearby castle hotel (man! It can be so cool living in the UK!)...the theme is cowboy...so guess who is going to make herself a bustle evening gown!  1870's, so a little earlier than wild west, but most people won't know the difference. I'm such a geek! :-D

Ally- Great news on the bone scan!!!!!

I can't answer any further questions about what my report says until I go to my appt tomorrow..When they gave me the information about my nodes, I was either too groggy or in some type of pain..DH kinda zoned out too..Didn't ask the physician associate cause I was in shock..So, i will get answers for sure and then make informed decision..Update tomorrow I promise..

Ladies, CRY IF YOU WANNA!!! We all need it sometimes.

Mil. I want to see pics too!!

Hi,

I just found this discussion board.  I am now 7 weeks post-op bilateral mastectomy with reconstruction.  This is my second primary diagnosis in less than a year.  Healing up OK, but was wondering- have had a skin and nipple sparing procedure- how long before the scabs drop off?  Anyone know, anyone else had the same thing?  On Sunday, I accidentally hit the left one by closing a door too fast, and scab tore,  causing a lot of bleeding.  Healed up, but really didn't need that!

Ally - that is amazing news!  I'm thrilled for you!!!  I'll be thinking of you during your scan sending you positive vibes!!  Yay!

Milaandra - that is so frustrating and I'm sorry you wasted so much time with that doctor.  Can you refuse rads now and wait until you know how effective the chemo is? Not sure if they'll just let you go back to the end of the queue if you're number is called.  I've not really had any bad SE on the Tamox...I think I've had 2 hot flashes and I've been bitchier than normal to my husband. I started taking my B 6&12 at night along with melatonin to help with the mood swings and the sleeplessness.  The b vitamins definitely help, but the jury is still out on melatonin.  I won't really know if that is effective until I'm sleeping in my own bed instead of that stupid recliner.  Oh and my boob is itching me like crazy.  I've been walking around scratching myself like a pervert.  Have you tried mederma?  It's supposed to work really well on scars.  I've got a tube lying in wait for my PS to give me the all clear.  

Quilt - how is that swelling?  Have you seen anyone about it yet?  Does icing it help?  

Lorililly - That rug burn feeling sounds uncomfortable.  I hope your check up goes well and that you're done with treatment. Yay!

Ml - when do you find out if you need chemo?  If you do it at least you'll know you've done everything in your power to eradicate those cells. I'm glad you have a support system to help you through it.  

Lipgloss - you're not the only one checking out other women.  I check out everyone trying to figure out what I want and think to myself "too big!, too saggy, did she have a MX?, are those real?, put a bra on lady!, etc..."  Go check out the prosthetics, insurance is required to cover them I believe and you'll probably feel better.  Also, I'm sorry about your husbands job.  I know it's easier said than done, but don't stress too much.  My husband got laid off suddenly 2 years ago and while initially it was a shock and scary, it turned out to be a blessing.  Now he's running his own business and is much happier!  (Which means I'm happier too). As for insurance, we buy our own.  I was bitching about Obama care and how our rates went up 40%, but at least I'm guaranteed coverage and it's way cheaper than risk pool rates.

Angel - good luck at your appts today.  Being a cancer warrior does take a lot out of you...you've earned the right to melt down.  It's not healthy to keep it bottled up.  Let it all out and start anew.  

Imheretoo- I'm glad to know someone is keeping track of everyone and checking on us all! I would love to share a bottle of wine with you. You sound like such a fun person and so caring. Maybe I need a trip to Italy.  

As for me, I am healing well. Juliecc was right about turning a corner around week 4-5. The PS released that underarm node stitch and that took care of it.  Im STILL am doing sponge baths and washing my hair in the sink.  I can't wait to take a long hot, shower. My right side is still wrapped in tagaderm until the 1st when I see my PS.  He might do a fill.  Depends on how solid the right side closure is looking. I won't mind waiting if I need to. 

This week I've been back at full time mommy mode without family to help, so Im sorry I haven't had the chance to really check in on everyone more often.  My middle child turns 6 today so orange creamsicle cupcakes are in order for his classroom.  I've already made the frosting and start baking after the kids to to school.  I wish I could share them with all of you lovely ladies.  I'm a firm believer that everyone needs a healthy dose of REAL sugar and butter once in a while!  Hoping everyone has a wonderful day and receives good news at their appointments.  

Update -

I saw my BS today and she said everything looks great and that clinically I am boring (that's a good thing - and she laughed) but I had killer shoes and to come back in 6 months.  She said she will be glad to put a port in for me if we go the chemo route after my appointment with the MO next week.  I forgot to ask for a printed copy of my oncotype results so I will call and get that.

I saw my PS today as well and the first thing he noticed were my shoes!  That was nice.  Anyway...he said that the girls are looking good.  The one side is where he wants it and the other side just has to relax a bit more.  He said that if it doesn't come down in the next 4 - 6 weeks that he can go back in and cut the muscle free.  My next appointment with him is in 6 weeks.  He did say that with the gummies (anatomically correct) implants that I don't have to wear a bra, but he knows how important looking pretty is so he said I could wear whatever bra I wanted whenever I wanted.  I think I will wait to get a fitting until everything is where is needs to be.

Angelfaith, I hope your Oncologist appointment today goes well, that the doc explains your situation to you clearly, that he listens to all your questions and give complete answers that make sense to you.     And most of all, I hope you get the answer you're hoping for!     Either way, I know you'll keep on being a strong and very sweet warrior, and that stupid cancer, if there's any drop of it left at all, has surely figured out by now that he shouldn't mess with Angelfaith and it's time to use the last feeble  drop of strength he has left to pack his bags in a hurry and run off!

Lorililly, I'm glad your docs think that the mastectomy took care of things!      We're here together with you hoping that thing does NOT come back!

Milaandra, Yay for getting back to the normality of work!     Your oncologist appointment sounds horribly frustrating!!!!    I hate docs that don't listen to patients' concerns or answer questions!!     Hopefully you won't end up having to plant your feet into the ground and scream to avoid a radiation treatment that you don't agree with.     Any chance of being able to meet with the first under-onc or chief onc to discuss the radiation issue  before your name comes up on that waiting list?        He was talking about radiation of the spine mets, right?        I think your idea of getting expert advice on how to safely strengthen your muscles to help reduce stress on your spine makes a lot of sense.     

OOOOOHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!       I'm smiling so much picturing you in that frontier bustle gown!     (even though I don't know what you look like!    But you're going to solve that problem soon, since you're going to post a pic of you with your bottom all bustled up fancy! )      When's the dinner date?   Going to a caste does sound cool!        Is this one of those things where one of  the dinner guests ends up being the "murderer"?     

Ally, Oh HOORAY AND THANK GOODNESS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!    I can certainly understand the terrified together with the happiness, though.       Gee-- You must be doing that right now, or have even already done it.      I hope so hard it shows absolutely no signs of anything serious and the onc is able to tell you with certainty on Monday that that result, together with your past negative scans, is a definite sure answer that there are no mets in the bones!       And then, they can get on to the business of figuring out what IS causing  you all that pain.      Milaandra's suspicion (certainty!!) of damaged nerve-caused pain sounds like it could be reasonable.      I know the rib part of the pain started in part before your surgery, but can't also the chemo cause long term nerve damage??      Maybe, if no cause can be identified, a Pain Clinic, like Ganzgirl is going to, might be able to help?     Yeah, I know, I'm getting ahead of things.....    we need to see what that scan really says first.

Being able to skip the chest radiation and move on to getting the TE's out and exchanged would be great!!!!!!!!!!!!!!!

Ganzgirl, I'm so sorry to hear that your awful pain is continuing!     Oh man, you really needed a J-A surgeon on top of it all!     At least, after having his idiot ways pointed out to him by the other doctors, he apologized to you.      I think a lot of your tiredness is coming from all that pain, and your body trying to deal with it, not to mention you not being able to sleep because of it.    

Jules, That was foolish of me to assume that  that Radio and completing your Tamoxifen were the last part of your battle.     I knew you are HER-2 pos, I just didn't realize that the Herceptin treatment was long term (but of course, thinking about it, it makes sense that it must be).     Wishing you the best in affronting all that!

Dragomirova, I hope someone here is able to answer your question.     I wonder if anyone in this group has done the skin sparing mastectomy surgery?    Injuring your surgical area like that must have really hurt!      Two primary breast cancers within a year of eachother is a lot of scariness to have to deal with.   I hope that all of your treatment goes well, and that you feel at home in our little and very welcoming group.     

Sunflowercat, I'm glad you're starting to feel better.     I hope you get un-wrapped soon, and can count on being able to take a SHOWER in a week!!

Quiltlibrarian, Gosh, still swollen, that definitely sounds like it needs a doctor check.     Let us know what he says!       Your extra foob for special occasions comment made me laugh.     Glad to hear your insurance will cover at least part of the expense.     

ml, Ha! Being clinically boring sound pretty good!!    I think you need to post us a pic of those shoes!    Hope the ps doesn't need to go back in and cut you more!    

Update:

Oncologist says NO RADIATION!!!!!!!!!!!! HALLELUJAH!!!!!!!! He says not sure why they said that. But my cancer ran away very fast!!! I'm a textbook success story!!!! 

PS gave me my final fills and I feel pretty good!! I will see him in 4 weeks and then we will nail down exchange surgery date..which could be late November-mid December..

Thanks for the prayers and words of encouragement!! 

Going to rest now...

Angel!  Hooray!  **happy dancing**

Quilty, you have such a beautiful surgeon.  You are sweet to "share" her with us.  I wish I had your surgeon too!  Tell her 'thank you' from me when you see her next.

Sunflower!  I know how you feel with the back to mommy duty.  Your cupcakes sound fab!

In the bag for you, Ally.

XXX

Angelfaith - WooHoo!  So glad you are doing so well!  You should be doing the happy dance all through the house.

Milaandra, Well--- It's nice to know the Brits are efficient about getting things done and keeping their famous queues moving,  but Damn, they aren't exactly giving you time to get this question straightened out and clarified!    It's good that at least the secretary agreed that your question was important enough to bother your assigned under-onc on her vacation with, --- I sure hope they really do notify her and she gets back to you soon!      I can see why, with your super reactive and slow turning-over skin, you are super apprehensive about even a few radiation treatments, more and more if it turns out to be sure that it is something that wouldn't change anything for you and would only give you a very painful chest.     

Dammit, why can't docs be clear about why they make the decisions they do, and listen carefully to patient questions and address them!?     I know you didn't think to even ask about the breast skin issues during that stressful and useless guest onc appointment, but if he had clearly explained why he has no doubts that post-quadrantectomy breast irradiation is important in patients that have detectable-sized bone metastases , (and is useful in you in particular), you wouldn't be torturing yourself with all those  "Is THIS the reason that I really could benefit from radio?" issues. 

The appointment with the Orthopedic surgeon is very good news!      You really do need to talk directly with him to ask your questions and get explanations, not just hear some passed on conclusion via the oncs!     Obviously, that is a critically important appointment to have, and you don't need a schedule conflict with the radio guys.      I hope the meeting goes well and you get all the answers you need.      And I super hope he tells you your spine is in good condition despite a few little tiny holes!      Maybe you can see what he has to say about a physical therapist consult to learn how to take stress off spine?     I guess you're already planning to ask that.

OH!   Just read your edit!     (I'm such a slow poster!)    Great going Rona!     That extra time to get answers and do the important stuff is just what you need!

(BTW , since you asked twice, that "other exam" that oncs wanted to see before starting me on the aromatase inhibitor is just something totally stupid and embarassing, not related to breast cancer, NOT a scan!!     --- I only mentioned it to give an explanation for why the heck I didn't pop that first life saving Anastrozole pill in my mouth the minute I walked out of the onc's office with the script.     I certainly didn't mean anything cryptic and am not hiding anything ominous from you.    My status is truly as very likely rosey as it appears to be by what is posted in my signature line.            SSSooo--- If you really want to know, (and I guess after accidentally inspiring your curiosity and concern, I owe you the explanation)----  Both of my oncs were surprised and concerned when I told them that I'd been in menopause since the age of 42, and am now 54, and haven't had any sort of  gyno appointment in 22 years--- (yeah, real dumb on my part, I know).    They both thought that 42 is too young to go into menopause without doing some kind of check to make sure that it really is menopause, and not some problem issue that stopped my cycle.      I'd always thought (and still do), that while 42 is on the lower edge of normal menopause age range (and some classifications consider it "early") it is not early enough to be considered "premature".      Anyway--- Main issue was that they wanted to make sure I really am, at least now, in menopause, before prescribing for me the aromatase inhibitor rather than tamoxifen.      So-- They made me go measure my hormone levels.       Also, they wanted me to get a gyno check soon, and since I told them I actually already had an appointment set up for one the week afterwards, they told me to do to that and report back to them with results, and they'd tell me definitively what my therapy would be only after I did that.      So---  No surprise, hormone tests show that this old lady really is post menopause.    Gyno exam turned out to be only partial and I need to go back next week to get the transvaginal Ultrasound, but I called in my hormone results to the oncos on Weds and they gave me the OK to start the anastrozole.      So--- I'm now on day 3 of Aromatase Inhibitor therapy, and on my way to becoming totally estrogen free.)     

Yayyyyyyy Angelfaith Im so happy for you !!!!

I saw my MO and RO on Monday, and they both say I don't need chemo, just radiation and Tamoxifen. I'm still a little worried about not doing chemo, I dont want it, but I WANT to do everything possible to kick this cancer to the curb for good! I had a bone scan yesterday to rule out some back issues I had been having, think they are musculoskeletal problems, but with the cancer diagnosis, I want to be sure. Also awaitng BRAC test, hoping once all these results all back ( and good I hope) that maybe I can let out a sigh of relief and move on. My MO kept telling me to relax and get on with my life.. he seemed very confident, as did my RO...but...

If all goes as planned I got 10/9 for my rad sim and then should start rads a week or so later..  they are wanting to wait due to my last surgery was 4 weeks ago..

Good news is October is Breast Cancer Awareness and our hospital has a big fund raiser / walk / run every year that was initiated by an amazing breast cancer patient, Sandi McCool.. I am excited about that, and went to our local support group meeting and met some amazing women...one who is almost 80 and one tough cookie indeed.. she is still getting chemo and has already beat her odds and her prognosis.. she laughingly says she was supposed to die this past spring.. wish you girls could see how sharp she is, wonderful success story...as we all shall be!!

hugs & love & prayers