August 2014 Surgery

Sunflowercat

oh Ally, I really hope it's shingles and not mets.  I know that sounds terrible and I'm sorry.  I am really glad you got an angel for your CT.  You deserve someone that in caring, compassionate and genuinely concerned about your health.  

Angel, I'm so sorry that your surgeon said you needed rads.  I'm hoping she stuck her foot in her mouth and that you MO says you don't!  If you do need rads...you'll be doing your best to squash any remaining cells!  

Lipgloss - yes, I think picking up those kiddos is probably too much work. (Judging by your avatar picture...that adorable baby is well over 10lbs!) I know how hard it is not to pick up your babies.  My daughter is having a lot of emotional meltdowns lately because I can't pick her up which means I'm having breakdowns.  Do you have anyone else to help you with those babies?

Bobo - I would never guess from your sunny disposition that you've dealt with such a pile of crap during your recon.  I'm humbled by your ability to see the brighter side and so glad you're sticking around with us.  ;-). We're all cheering for you and an awesome outcome for this next surgery you have scheduled!

Quilt - I hope your swelling gets better soon.  That sounds so uncomfortable.  

Does everyone really gain weight with Tamoxifen?  I have gained 7lbs but have lost a ton of muscle (I also injured both knees earlier this year)  I tried on my jeans yesterday and was devastated! I have like 2 inches to go to get them to button.  Waaaaah!  I don't think I can handle any more weight gain.  I busted my ass for years to lose all the baby weight!  On, the brighter side...my MO emailed and told me my BRCA was negative.  I am relieved to know that I won't be passing that gene on to my daughter.  So things could be much worse...

Imheretoo

Ally, First of all, I'm so very glad that that wonderful CAT scan operator (doctor?) increased the range of your CAT to catch and specifically focus also on your rib!!!!    She certainly is a wonderful person, and it's about time you ran into someone in the medical profession who truly cares and takes care of you!!    Hoping so very very hard that the CAT (all of it!) comes back totally negative!        And that your onc comes in and examines you seriously and gives you some expert answers.        Great that you're going to the appointment at the onc's office with a list of questions that at least you can ask the NP.     (Man, when did NP's take over medicine in America???     Well-- I guess, since the profession exists, they are hightly trained, and know what they can and cannot do, and know when they have something in front of them that the specialist doc NEEDS to see.)    And I'll add myself to the train of people hoping that the rib pain and skin issue are signs of shingles and not what you are most fearing.     You are doing exactly the right thing, to take the approach that you need to get this diagnosed by whatever the proper specialist turns out to be, whatever it is.        I'm so sorry that you're in so much pain!!    

As for the ins co.----     Oh Man!!    But just keep doing what you are doing, stay strong and clear headed and they and you will get through this absurd appeal process and you will win.    

Sweet Ally, I'm vibrating with all my strength to set the Universe going a good way for you!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Lipglosssmom!!!!    I'm so glad you reported in, because I've been thinking about you and wondering how your recovery is going and how you are dealing with the issues.        I was about to "call out" to you in these days, to see if you were still hangjng around and OK!       Baby in your "avatar" pic sure is cute!   I guess that's one of your lug-arounds?      I don't know anything about what you should and shouldn't do after your surgery, but 'll just say be careful and gently with yourself!

Sunflowercat,  YAY for being BRCA gene NEGATIVE!!!!!!!!!!!!!!!!!!!!!!!

Lipglossmommie

Imheretoo- Thank you, that's my now 2 yr old, I'm going to attempt another pic like that w both of them in it, The fun part is kissing them. I'm sure it will be near impossible. 

I have to say I am dreading have had the diep now, but I heard most diep girls go thru this around this stage. Oh how I wish we could just have one surgery to remove the cancer and wake up with a beautiful rack! My husbands job is forcing him out so now we get to worry about insurance and when I can fix my frankenboobs. 

"I have a flap and a flop"

Imheretoo

I think we're all compulsively checking here to see if there is any news about Ally's onc appointment. (Not that you should feel a stressful obligation to run and report to us every news and non-news you have, Ally. ---Just saying we're all thinking and concerned about you and hoping so hard that things go right.)    I'm going to keep vibrating the Universe with all my strength for Monday's CAT results and the ins. co's deliberation.    Hope the pain is more tolerable today.     Everybody, try to have a relaxing weekend and do something nice for yourself.

Allydp

Hi ladies, sorry I haven't checked in, but I don't have much to report and am beyond frustrated and exhausted with this whole thing. My abdomen/pelvis CT, the one that the angel tech said she'd include my rib on, was clear. However, turns out she didn't get the rib. I don't know why or what happened. But I did see my onc's NP on Friday and she is also concerned. She wants me to have a bone scan and MRI, but the bone scan is still waiting in appeals. I had a long convo with the lady who handles the ins and she said they are going to fight for it and do whatever it takes. I still have a feeling I won't hear anything until they make a decision on the appeal. As for the MRI…I can't have one with these stupid expanders in. What's especially infuriating about this is I asked for a MRI before the BMX to evaluate this rib pain. They very reluctantly agreed, but my ins denied it. My onc personally called me to tell me it was denied and told me she didn't feel it necessary to fight for it since at the time she wasn't taking the pain very seriously. So to have her NP suggest a MRI….my husband lost it and gave her a piece of his mind. So then we talked about doing a PET, but if my insurance is denying scans, they're certainly not going to approve a $7k PET, especially since I've already had one at the beginning of the year. So we're doing a chest CT just to have SOMETHING until they can get the bone scan approved. Apparently a chest CT will show both my spine and rib. As far as the small rash, she doesn't think it's anything, but said I could see a dermatologist if I wanted. You can't tell me that it's just a coincidence that this rash pops up EXACTLY where my pain is! She dismissed shingles right away, said it didn't present as that at all. And when I asked her about skin mets she kept talking about IBC and that's not what I have. I told her they were two different things and she said they were the same! Unless I'm crazy, I totally thought skin mets was very different from IBC. I mean you can get skin mets from prostate cancer! Sadly I was expecting this, so I had already made an appt with my dermatologist as soon as I saw the rash. I was able to get in this coming Monday morning. He's been my derm since I was a teenager with cystic acne. I'm going to tell him to biopsy it no matter what he thinks it is and I know he will. And to top everything off, I developed a huge cyst on my back about a foot away from the rib pain/rash. Not a surprise since, like I just said, I've had cystic acne forever. Well, I had the bright idea of putting the lidocaine cream on it that I use to numb my port. I figured it would numb it since it was pretty painful. So this morning my husband carefully applied the cream and covered it with saran wrap, just as we do my port. That was at 8:00 am. About an hour ago, I took a peek and I'm having a huge reaction to the cream! So I guess my derm has his work cut out for him Monday. Seriously ladies. I'm starting to lose it, but again, doing my very best to stay busy and sane. We're having dinner at our friends tonight and all I can say is BRING ON THE WINE! 

As for my ins denying all these scans, it's frustrating, but I can somewhat understand why. As I mentioned before, when first dx, they saw a possible met on my sternum. I had every scan you can possibly imagine, some twice, in order to figure out what it was. This will be my ELEVENTH scan. I'm sure my ins co is tired of paying for them. However, all of them have been warranted, so to me, it's still frustrating.

Imhere - yes, the whole NP thing is crazy. I don't remember ever seeing a NP when I was younger. Just in the last 5-10 years or so it seems like every doctor has one and that's who you usually see. Very annoying. 

So you can see why I didn't really want to come by and update. I hate being a drain on this thread. To those checking in and following my saga, thank you very much. As much as I hate to drag this thread down, it's been a lifesaver to be able to come here and talk about this. I'm not saying much to friends or family since one, I don't want to worry them, and two, they just don't get it. 

Sending love and hugs to you all. Hope you're having a great weekend! 

glennie19

  {{{Ally}}}

I'm so sorry you are having this much stress and difficulty!!  Glad you are seeing the derm on Monday and hope you get an answer on the rash.

Go for the wine!!  You totally deserve that. I hope you can relax and enjoy your time with friends.

We are here for you,, VENT away..  cuz you know,, we all totally get it.

Imheretoo

Ally, this goes way way beyond "frustrating".    A very scared DAMN for the NP ruling out the shingles, but maybe the Dermatologist will tell you something different about that??      The fact that you need to educate the NP about basic aspects of bc is not exactly trust inspiring.      (Excuse me, but what the heck does your onc do???   ----besides calling to tell you that your scans are denied and that she doesn't consider pain in a cancer patient worth evaluating----   Is she ever even there??)      YES have dermatologist do a skin biopsy!!!!!!!!!!!!!! 

As for being a "drain" on the thread----  Don't think I need to tell you that the thread IS the people in it and what each one is going through.     You're going through HELL and we are with you, feeling helpless, but wanting to give you all the support we can.   

I'm glad you're getting together with friends tonight.    

ml143333

Allydp - You are not a drain on this thread and this group of friends.  If this was me or anyone else, you would be the first one to listen, offer what information you had and offer support.  You started this thread because you wanted to start a support group and now you are one that needs to be supported.  Let us support you!

I hope you have that glass or bottle wine and that helps you unwind for a bit. 

Work with the dermatologist on Monday and see what he says. 

I don't know what else can be done about the insurance company, but I hope they will approved something that will give you some answers and peace of mind.

Lipglossmommie

Ally you vent all you want, that's what we are all here for. ((((((((Hugs))))))) and I pray that it's absolutely nothing. $&/!?*#{¥ YOU CANCER!

angelfaith456

Ally - vent all you want..HUGGSS to you!!!

bobogirl

Ally:  Sing out, girl!  Sing out proud!  F(*^*^%&^%$*&^!  I want to smash someone.

I get what you're saying about the ins., but someone needs to take charge here and figure out what's going on here.  It is getting ridonculous!  Time to get out the big guns, perhaps, and go see an integrative medicine doc?  Or a naturopath?  Someone who will actually take the time to care about what's happening with you and treat the whole person?

Also, this being denied and having your feelings minimized cannot be good for your psyche.  I say go to the breast center, perhaps, and get a therapist there?  I did that in 2008.  It was a very good idea.  Plus, if you get a good therapist, and things aren't going well logistics-wise in the hospital, sometimes she can make a phone call and try to resolve things for you... at least, mine did.  

You need to assemble a might team, girl!  That's what I think.  I know your sweet husband will feel better if you do.  He is stressed out too!  **I love him**  Sending you a big squishy hug.  PS -- IBC and skin mets are not the same thing.  **idiots**

Meadow

Ally, I am cruising thru for an update on you....

I cannot say I am confident in your NP, I would ask to be scheduled with your Onc, not with the NP, when you have appointments, see what the scheduler says and how stinky you have to get. I know there are some great ones out there, but I think your case deserves the MD. It really shouldnt be a big deal to them but it is a big deal to us the patient.

Please hang in there. keep us all posted. Hugs to You!

Allydp

Saw the derm today. He admitted it's a little peculiar that this rash would pop up right on the painful rib, but he truly doesn't think it's anything serious and gave me a steroid cream to use for a week. If it doesn't clear up, he's going to biopsy it. While I was there he did a full body check and ended up taking two other biopsies. He doesn't think they're anything, but with the cancer history he wanted to be on the safe side which is fine by me! 

Meadow - thanks again for checking in on me. I see my onc on the 29th. I usually see her and not the NP, but since this was a rush appt, they just put me on with the NP. 

Lipgloss - I missed your post about your husband's job. I'm so sorry. That's the last kind of stress you need right now. How are you feeling? I know the flap recovery is a little longer and more involved, but I hope you're starting to turn a corner. 

Angelfaith - have you talked to your onc about radiation? Will you need it? I'm in a gray area and the choice has been left up to me, but I think I'm going to do it. My rad onc told me it will only reduce my risk of recurrence by about 5%. He and my PS both think that's significant, but my onc and BS don't feel it's worth it. I just don't think I can walk away from this and leave those percentage points on the table. I don't want any regrets.

Sunflower - how are you feeling? All healed from the bump I hope? 

Ml - when do you start chemo again? 

So how is everyone else doing??? Exchange ladies, are you happy with your results? 

ml143333

Allydp - glad your derm took you seriously and treated you accordingly.  He sounds like a capable and compassionate physician which is exactly what you deserve.  I hope the cream will work and the biopsies come back negative.

Lipgloss - I missed the post about your husband's job.  Prayers coming your way girl.

Angelfaith - Praying that you will make the right decisions regarding your treatment(s).

I don't know about chemo until I see the MO on 10/2.  My BS says yes do chemo because she thinks the percentage difference will be at least 5% less with chemo and tamox.  My PCP says there is some disagreement between physicians on Oncotype scores up to 25.  So...I have a list of questions to ask him.  First of all, of course, I want to know the chances of recurrence between tamox only  and tamox and chemo. Will the chemo increase my chances by several years or are we talking one or two?  I would like to know the effectiveness of chemo (and the type) on intermediate grades versus high grades.  I would also like to know if I should go straight to tamox or should I look into a medication to reduce the ovary production of estrogen along with tamox or should I look into having the ovaries removed and go straight to an AI.  I would like to know if there is any credence to taking melatonin at night with the tamox based on a recent study that came out.  If there are SE with tamox are there other options to help lessen them or make them go away?  I also want to ask him if I were his wife, what would he do.  I have always asked that of my physicians.

I see my BS and PS again on Thursday.  I think my BS appointment will just be to check out my healing and give me my oncotype results.  When I see my PS, I hope the will be happy with my progress.  I have been massaging the muscle and it has come down a bit, but still not matching the other side.  My girls are also not the same size and are both more toward the outside of my chest rather than toward the middle.  He has said before that all come together in a few months.  He's good at what he does, so I guess I just need to trust him.  By summer, I just want to have a nice looking rack and a flatter stomach. 

 

lorililly

iI only had to get a mastectomy on my right side. I got a really small implant in my left (good boob) so they would look the same. My right one is starting to look like it is dropping but not there yet and around the implant is still sore. My left one has this rug burn feeling around my nipple area that is really bothersome. Iam still wearing mastectomy bras. I go get a check up in couple of days to see how things are going. ( I had phyllodes boarder line ). Thanks for being so awesome ladies.

Jules_NY

hi guys,

Have been MIA for awhile. Holy moly I think there are more posts now than in Aug!! Lol. 

Started my Rads today, we'll see how it goes!

Love and hugs to all seems like a lot of people need it,

Julie

Lipglossmommie

Thanks Ally and Ml, 

I'm doing well ladies and got a clean bill of health from my oncologist today and I don't need to go back and see him! Praise Jesus! Ally you will be next to hear that love, I just know it! 

In the meantime,  walking around with one boob is starting to get to me and I am staring more and more at other women's breasts now when I'm out and about, now I know what it's like to be a man, I feel like a pervert.  Anyone else catch themselves doing this? 

Jules_NY

Lipgloss- YES! I do the same thing!! I only have one boob too, though I know what you went through was unplanned. For me I can't have recon until 6 mos after rads are done because it's IBC. Have you considered a prosthesis? I have one and you would NEVER know. I'm a 36B so not that big to begin with. My ins covered it too. Sorry you are feeling blue about this. 

ml143333

Lipgloss - HOORAY!  Glad you got a clean bill of health.  Have you thought about a prosthetic?  Most insurance companies will pay for them.

Jules - One treatment down!  I hope all will go well!

Lipglossmommie

I meet w my ps in a week, I'm hoping we can start recon (again) ASAP. But am reading a lot about waiting 3 months before they will start again.  My husbands has 13 weeks fmla and after that I don't have any help w recovery till another 6 months on.  

Currently I am  rocking an itchy cloth like boob, my chest scoops in so whenever I bend over you clearly can see my sunken volcanic like cavity. So pretty, how ironic my "lethal weapons" I used to call them actually became my lethal weapons! 

ml143333

Lipgloss - Hope all goes well with the PS and you can start reconstruction quickly.  I had my implants immediately after the BMX, but my recovery wasn't bad at all.  I was back to work in two weeks.  My PS said if I had waiting and done reconstruction later, depending on what route I went, I would have been out a week or two.  He said some women take four weeks depending on the severity of their reconstruction.

 

Imheretoo

Ally, I'm very glad to see that the
Dermatologist is being caring and serious and giving you a
thorough and careful control. And VERY good to know that you have
an appointment set up to see the Oncologist and that normally you
do get to see her, and that the NP thing was just because they
were making a special effort to get you some quick attention. OK,
I'll stop ragging on and hating your Oncologist. So-- another
week, or maybe just a little bit more, and you'll have gotten onc
specialist attention AND have gotten the authorization from the
ins. to proceed on Scint scan, because they WILL accept it on the
appeal, and then they'll do that scan real soon, and I'm sure your
onc will check the results right away. You know that we are all
thinking about you and concerned and hoping you get real,
convincing, reassuring answers that explain and can remedy all
that pain you're going through. Just keep dealing with all this as
you have been, in that wonderful way that you have.

ml, also you will be getting some
important answers in a little more than a week, or at least a bit
more info to base a decision on. It must be very confusing and
difficult to be in an ambiguous position and get contradictory
inputs from different doctors, knowing that the real answer of
what's best to do just isn't clear. But the most important input
will come from the Oncologist, and, if I'm understanding
correctly, you haven't yet had your first onco appointment. I hope
that you find your Onco to be very easy to talk to, and the type
that listens to and clearly answers all your questions. You have a
grade 3 tumor, with a low-intermediate Oncotype score, is that
right??

Lorililly and ml both- I hope those
gummie bear implants start cooperating and moving to the right
place soon, and the post surgical discomfort and pain stops!

Lorillilly, I'm sorry to read that
your Phyllodes tumor was borderline (but certainly glad to hear it
wasn't classified as malignant!!). I looked it up so I
could understand more about what you're going through, and saw
that some websites describe "borderline" phyllodes as being
equivalent to a low grade. Did your mastectomy complete your
treatment, (besides checkups) or will you need to do radiotherapy
too?

Jules, Great to hear from you!
Good luck with those Rads, and Here's hoping that and the
Tamoxifen are the LAST bit of cancer therapy you'll ever need
to do!!! You've certainly been through a lot, and that
Complete Pathologic Response sure looks good on your sig line!
You sound cheery, so hope that means you're feeling OK.

Lipglossmom, Well!!!
I sure like this good news from you, and BOY is this ever GOOD
NEWS!!!!!!! An ENORMOUS WHOOOPPPPIEEEE!!! for getting kicked
out by the oncologist and told you don't need him
anymore!!!!!!!!!!!!!!!!!!!!!!!!!!! Now you finish up your
healing!!     I hope you find a
solution that helps you feel less uncomfortable with your problem
side, and I hope your PS tells you something good next week.

Quiltlibrarian, How's
your underarm? Is the swelling going down????????? Did
you talk to the breast surgeon about it?

Milaandra, Did you go
back to work?? What did the docs and you decide about the
spine stabilization??    How's the Tamoxifen treating you?    I start my Anastrozole real soon. (Oncologist wants to hear back about results of another exam I'm having tomorrow first, but I'm sure they'll have me start it right away after that.)    Have you decided what gorgeous clothes
you're going to pack for your Christmas getaway? And most
of all-- You doing OK Sis?????

Angelfaith, I guess it's in two
days that you get to talk to your Onco to see what he says about
you needing or not needing the Radiation? You feeling OK with
that possibility now?     I sure hope he tells you you don't need it!!    I know you've been through it all, and just
need this stuff over!!! How's the stretching going? Do you
still need to take the muscle relaxers to stop the pain? Do
you have more fills to do or are you up to the way you want to be
now?

Sunflowercat, Are you still on the
antibiotics for the seroma thing? Are you still wrapped in
Tagaderm? Does having to keep that dry give you continued bathing issues? (I'm
glad I googled what that is today, because when I first read your
post, I thought it was  Alloderm, and I was really confused about
why you got wraped in that!) Are you heaing up OK? How's the
underarm stitch pain? You feeling better emotion-wise?

Bobogirl, SunnyC, Sunshine36,  you doing OK?

Sassy Seven, I guess you're a week
into Radio? Are you starting to feel fatigue?

Seashore,  How are you feeling now?    Have you been able to start on your postsurgery/ drain exercises yet?    

Juliecc and Cateyz2, Are you happy with your reconstruction results, now that you've had some time to heal up from the exchange surgery?

Ganzgirl and Janepod, has your TE pain started to lighten up?

Psalm, Have you started your rads yet?     Mine should start soon--- Waiting for the call telling me when I need to come in to get it all set up and started.    

Anyone else who's still dropping in here but is silent-- I sure hope things are going well for all of you!

angelfaith456

Imheretoo- thanks for checking on all of us! I'm doing Ok and waiting for my appt on Thursday..I had my moment to be depressed, to cry, to scream this past weekend and it helped..I'm feeling much better..The muscle relaxant helps and I only take it twice a day..I'm almost off my pain meds..I can stretch my arms up down and all around without much pain. It feels good! I think I have one more fill to go. That appointment is on Thursday too.

I'm getting back to my positive state of mind! If I have to get radiation, I know I can tackle it and be fine with it. Sometimes you just gotta have a good cry! Being a Cancer Warrior takes a lot out of you sometimes! But we get back up and continue to fight even when we are knocked down!

Keep fighting Ladies!! Cause I'm right there with you cheering you on!! Big Huggs!!!

bobogirl

AngelFaith, you are a great warrior!  Now that you've got things well in hand, are you starting PT?  Did your DR say it would help with stiffness?  Mine did.  I did not love PT, but it really helped.  Right now I'm having PT massage once weekly.  Again, not exactly a day at the spa, but I really needed it.  All of these sxs have taken a toll on my body.  Trying to keep myself strong. 

I'm still here, thanks for your kind words!  Lipglossmommy, Wonderful news!  You can just be a 'lethal weapon' all on your own!    I know the feeling about the giant caved-in place. {{{lipgloss mommy}}}

ml143333

Imheretoo - Thank you so much for checking up on all of us.  yes - stage 1, grade 3, oncotype 23.  If chemo on top of tamoxifen gives me better odds to lessen distant recurrence, then that is what I will do.  With the help of God, my family and my sisters here - I will get through it with hopefully minimal SE.

My gummies are just not cooperating with each other yet.  The one on my non-cancer side is lower than the one on the cancer side.  In my opinion, it needs to come up but I don't think that is possible.  The one on the cancer side is definitely high, but it will come down as the muscle relaxes some.  I still do my exercises and massage.

Angelfaith - you are right - we are Warriors and yes - sometimes we need a good cry or a good yelling session at the moon or a good laughing session with a silly movie.  I haven't gotten to the crying point yet, but sometimes feel really close when I think about chemo.  I know if I do it that it will be more insurance and that I will get through it.  I just have to see it as my friend or a fellow warrior to ward off future recurrence.

 

lorililly

I really hope these implants fall into place soon.. So far what Iam being told that the mastectomy should be the end of my treatments .. Maybe me not going to see the onoconglist after mastectomy. I went to see the onoconglist after I got my implants so that might had something to do with them having me not do any radation.. But I do have to go see my breast surgeon and the onoconglist every 5-6 months.. If it comes back I will definitely need radation .. 

Milaandra

I nominate Imheretoo for Miss Congeniality in our pageant of broken boobs!  What do you say, ladies?

I am back at work...last week I did part-time and I'm full-time this week. I miss naps! 

I don't know about the spine...I was so angry yesterday.  It's like there is a head oncologist, with other oncologists under them.  The first under-onc I saw was great.  I liked her a lot.  She's on vacation.  And head onc was too busy, so passed me off on some other under-onc.  To be fair to him, he didn't have much notice that he was seeing me, and I was still in the waiting room while he was trying to get the Cliff Notes.  So I waited for well over an hour for him to tell me...nothing at all.  In fact, I knew more about my case than he did.  He was looking at his computer screen, reiterating all the stuff I already knew.  And it turns out, either the orthopedic surgeon didn't respond, or he responded to my original under-onc's email and no one could access it.  He didn't answer any questions and wasn't amenable to any special requests (I wanted to see a physiotherapist or something similar to get a consultation on how best to avoid extra strain on the spine and rib...seems reasonable, doesn't it?) He kept pointing out anomolies on my CT scan that had already been dismissed by everyone else on my medical team.  Worst of all, he made me sign papers agreeing to radiation so he could get me on the waiting list...despite the fact that my original under-onc told me that wasn't going to be done right away.  It's pretty standard that hormone therapy is the first treatment for stage iv positives.  You only get one shot of radiation per area (or radio therapy as they call it here...like you're getting treated with music)...why waste it?  After all, if I have stuff floating about in my system, why radiate in case it comes back in the same spot?  If the drugs don't work, it could show up anywhere.  If the drugs do work, it may not show up at all.  If the drugs stop working, you need some reserved weapons in your arsenal.  So three hours in total for nothing but grief.  But at least someone else got to see my breasts.  After all, it's been over a week since I exposed myself to a stranger.  LOL!

I'm evening out on the Tamox...once my tummy got used to something new, I've been doing just fine.  No SE yet, although I do have sort-of hot flashes...not as bad as my older sister describes them, though.

My scar is itchy!  And I'm getting all sorts of those tiny little jagged nerve pains, particularly in my armpit.  I guess it looks okay, though.  Now I need to find a good healing cream.  Any recommendations?

What exam are you getting, Imheretoo?

bobogirl

Imhere is def Miss Congeniality of our thread.  I second the nomination.

Milaandra, you have your head squarely on your shoulders!  You have such a clear picture of head onc.  Don't let him rattle you.  Am not a doctor, but I thoroughly agree with your assessment of the situation.

By the way, itchy scar totally normal for me.  I have been told that it is the nerves attempting to reconnect.  Sometimes it's a buzzy feeling.  Sometimes it feels like I am being zapped.  Can you get cleared for PT massage?  Get a prescription from one of those idiots?  People go back and forth about massage for 'people like us.'  But I've just started it in earnest -- I have script, so I have copay only, otherwise I would not afford it -- and it is really helping me a lot.  It will not cure the buzzing.  But it helps in so many other ways.  XXX

Allydp

MY BONE SCAN WAS APPROVED!!! I am happy, nervous and terrified all at once! I was able to get in tomorrow at 10:15, so I'll have results by the time I see my onc on Monday. I was supposed to have a chest CT today just to have some imaging of the rib while we waited for the decision, but I cancelled it. Had I not had so many scans earlier when dx, I would go ahead and do it for safe measure, but the amount of radiation I've received this year is getting crazy. I think starting with the bone scan and going from there is best. I'm so relieved!!! I also had an awesome appointment yesterday with a rad onc who gave me some great info and really helped me in making my decision whether or not to do radiation. I don't think I'm going to do it, which means I won't be keeping these torturous TE's for as long as I thought. Things are looking up! 

Ml - you sound just like me when it comes to gathering facts and questions. Good for you for doing your research and being your own advocate. 

Jules - how's rads going so far? How's the minoxidil working? I've been thinking about you. 

Lipgloss - yay for the clean bill of health! That is awesome news! Check out knitted knockers online. They are supposed to be pretty comfortable from what I hear. 

Imhere - you are awesome. That is all.

Angelfaith - did you have positive nodes? Did you have residual disease after BMX? I've been doing a great deal of my own research and have met with 3 rad oncs now about whether or not to do rads. I'm triple negative, node negative, but had a larger tumor than you and also probable LVI. So far every single opinion has been no on rads except for one. He told me there's a small amount of data that suggests it might marginally increase disease free survival rates…but then I had a complete response and he has since changed his opinion to no rads. 

Mia - what a frustrating day with that doctor! It's amazing how much we have to babysit our care. I always think about the elderly and how they must fall through the cracks in situations like that. Anyway…I digress. Sounds like you have your ducks in a row and are on top of everything which is great. When is your next appt with head onc? Hopefully you can get things straightened out with him and get some clear cut answers. So glad the Tamox is treating you fairly well so far! 

Sending love and hugs to everyone else! 

ml143333

Woohoo Ally! So glad the scan was approved!  I understand your relief and your hesitation at the same time.  I hope that all goes well.