February 2012 MX

Deborah2012

Hello Fab Febbies,

I had my first mammo post the big BC.  I don't have to go back for a year and all is well!  My radiologiy MD is very thorough.  She had the technician retake a couple of shots on TweedleDee to be absolutely sure.  TweedleNumb is literally out of the picture.  As others, I realize how much I had put out of my mind.  It started coming back to me approaching my yearly exam. 

I did take some photographs when I had my surgical drains in.  It was so surprising to see tubes coming out of my body with yucky fluids.  Who was that person?  The photos of my TE (what felt like a "cardboard mis-shapen box" imbedded under my skin) were comical to me.  At the time I was so happy to just have a large bump that approximately matched in size the remaining "good" girl.  I saw the yellow skin from betadine post surgery etc.  Sheesh, the discoloration went up to my collar bone and then some. 

I looked at those photos.  It made me feel proud that I had weathered that prolonged storm.  I have moved forward with a positive outlook, simple joy, and pure contentment .  My mastectomy seems so long ago- almost as if it didn't happen.  The other night laying in the bed, I remebered how once upon a time I had to have my pillow fortress to support my surgical areas to avoid pain so I could hopefully not move and get some sleep.  I remembered how long it took before I could sleep in any other position than on my back.  I immediately flipped on my stomach and both right and left sides. I was positively thrilled to be able to sleep in any damn position I wanted!  I can completely submerse myslef in a bubble bath.  All these things I did all my life with some appreciation- but without pure DELIGHT.  My how bc has improved so many other aspects of my daily existence.

Happy New Year to all of my dearest Fab Febbie MX/BMXers.  I am so grateful for having been able to take this journey with sisters as yourselves.  Thank you.

BTW, Debbie Os and I are going to get together in a couple of weeks at the UC three of our four kids attend! All three graduate this year.  DebbieOs has a son who is in medical school at another institution.  What a small world!  Deb and I have so many intersections in our lives.  She has been terrific!

XOXO Hugs, Smiles and Cheer to all for 2013!  Our first year is behind us.

P.S. My son will devote his professional life to oncology research. He got accepted into a special program called M.D. Ph.D (also known as MSTP).  The program is 7-8 years in duration.  He graduates this May from a UC in Molecular Cellular Biology.  Breast cancer will likely not be his area of study.  However, much research is now focusing on commonalities of processes, individualized tumor medicines, cancer recurrences etc.  I'm so glad my kid will be smacking cancer around!  So there. 

Alicethecat

Hi Deborah2012

I am thrilled that your mammo is OK. Congratulations!

Very pleased that your son is going to become an oncologist. What a wonderful thing to hear. My guess is that he will have a special sensitivity towards his patients. When I was treated kindly by my oncologist, it really helped me to trust him.

Best wishes

Alice

Nel138281

Good morning all

Deborah2012 - Congrats to your son!  Contentment sums it up for me, so good to be feeling like my old self again and yes sleeping any way we want.

Lying in bed this AM I was remembering a year ago I was waking up with such fear anticipating the MX and what was to follow.  I can't beleive it is almost a year out.  Seems like just yesterday and seems like ages ago.

We have all come so far   YEAH for us!

Be well

Nel

Alicethecat

Nel and members of our February MX group

Great to see you posting!

Can't believe it either that I was quaking in my boots and wondering if I'd made the right decision for me re mastectomy or lumpectomy.

Happy I had the mastectomy. Sleep easy in my bed most nights.

Hope you all do too.

Best wishes

Alice

Wren44

Saw my MO and she prescribed a diagnostic ultrasound on the MX side and a screening mammo on the other side. I'm just wondering if this is customary. I'm a little nervous.

Otherwise I'm doing fine and back to all activities.

DebbieOS

Hi Ladies!  I'm getting my first mammo today since the surgery and am wondering the same thing...whether or not getting an ultrasound on the MX side is customary too.  I know that my MO didn't order one for me, yet, it seems like it'd be prudent to do so.  It sounds like you have a cautious MO....

Nel138281

Had my mammo in Dec.  No ultrasound on MX side Hmmm should I ask? 

Be well

Nel

DebbieOS

Just had my mammo...ALL'S CLEAR!!!!!!!!!  YAY!!!!!  I did, however, ask the ultrasound tech about getting an ultrasound on the mx side.  She said that, to her knowledge, the only time it's done is when a mass was originally found via an ultrasound, not through a mammogram....hm....  I will ask my MO when I see her next week.

Deborah2012

Hello Fab Febbies!

I just love our thread!  We all go through the same stages with individual treatments and recommendations.  In my case, Her Royal Foobness is literally a saline water balloon stuffed inside a skin bouda bag!  There is zero to unltrasound.  It'd be like listening for the ocean in a conch shell!  Oh the mammories of it all!

My dearest Debbie Os I was so happy to get your texts and see your post tonight!  I was especially relieved in your case because I know you have some tissue in your Foob.  XOXOX and hugs with a few leaps in the air, too!

I go on Thursday for a bone density test.  I had delayed it for more than six months.  I told my onc after my MX and reconstruction surgery (90 days later), that I just wasn't ready to have an IV of Zomeda that would remain in my body for months (or a year?) to counter the effects of estrogen suppressors.  My previous bone density test (done because of age- not due any health issues and pre-cancer) was normal.  My fear was/is that if I have an injection to counter osteoporosis, I just can't stop it if there is a deleterious effect.  It's in my body and it's going nowhere.  I am not keen on having to take another pill either.  I'm sick of all the stupid pills I have to take.  I've had thyroid disease for 20 years, too.

We'll see what has happened to my bones in almost two years (since the last bonedensity test) coupled with natural menopause and being on an estorgen suppressor (Anastrozole) for about 9 months.

To my FFF sisters who underwent chemo.... when I go to my oncologist for regularly scheduled monitoring appointments, I have seen the chemo room.  Across from the bathrooms there is a large room with huge glass half walls.  I see patients with all types of cancer hooked up to machines in lazy boy type chairs getting chemo IVs.  They are in the company of others receiving chemo as well. It's a busy, full room.  If one uses the restroom, we can see the chemo room.  It gives me great pause to recall that numerous of my Fab Feb sisters had that treatment added to their MX and BMX experiences.  I always think of all of us when I see that.  And lets face it.  A woman of 56 years old simply must use the restroom!  It's practically as bad as being pregnant when we could pee on command!

Alicethecat, it's wonderful to read your posts! 

Anybody get a Zomeda IV or other what do they call it? Prophylactic for osteoporosis from our FFF club?  How was it? 

Hugs and smiles,

Deborah

P.S. Galsal how the heck have you been????

janiceg415

Deborah2012

Zomeda IV  (what the heck is it)????    I started taking my estrogen suppresor in July, had a bone density test in the fall. Yes I know that the meds can or will reduce bone mass, so MO advised to take extra calcium supplement. I also have hypothyroidism.      So yes there are alot of pills, that sucks but lucky we have them available. 

Deborah2012

Janice,

If I had the last synthetic thyroid pill on the planet, I want you to know that I'd share it with you! 

Zomeda is some liquid anti-osteoporosis medicine that is administered intravenously and it lasts for 6 months?  Or is it a year? Both my Onc and my second opinion onc said that Zomeda had a small side benefit to prevent bc recurrence besides the avoidance of osteoporosis.

Anyway, I had my CT scan today.  I almost freaked out when I saw the donut machine.  I warned the staff that I'm claustrophobic.  They showed me how I wouldn't be in a tube, The ring only passed over my abdomen to upper thighs to measure the bone density in my hips. I did just fine.  It took about 5 mins. Having my arms, head, and legs outside of the machine made all the difference in the world.  My previous bone density test was not done with a CT donut machine.  So, I was a bit unprepared. 

We'll see what my onc says when we get the results.  I might have good bone density, they'll monitor me going forward and may tell me to take a calcium supplement instead of Zomeda. 

mary625

Hi, all.  I haven't been back to this forum in almost a year, but I'd like to wish all of you a wonderful one-year anniversary as mine is tomorrow. 

mma59

Hi ladies, it's a year tomorrow for me also.  Just had my nipple done a couple weeks ago!  Woo hoo!  My arm still bothers me a little but that's about it.  Taking tamoxifen and the only SE from that is hot flashes.  All in all things are good.  I have become a Grandma twice, a little girl 5 months old and a little boy 1 month old!  Life is good!!!  Wishing everyone continued health and happiness!

Deborah2012

Hi ladies,

It's great to read your progress.  Good to see we're moving forward.

My bone density CT scan came back.  I didn't do very well.  My lumbar spine T score is -2.3.  At -2.5 You have osteoporosis.  I've never had back problems.  Now my L2 disc is shot and I have some decisions to make.

How many of the Fab Febbies are having osteo issues? 

How many of us had oncs start you on a calcium supplement as soon as you began Aromatase Inhibitors?  Mine didn't.  I think she thought I was already on one.  I wasn't.  Just Vitamin D3 because a blood test years prior noted it was low.

My immediate choice is take Boniva for the next month or two, take 1200 units of calcium supplement and research the more interventionist therapies that my onc is interested in. 

My last bone scan about a year and a half ago (or less) was very healthy.  No issues.  Not even that osteopenia (the middle deteriorating stage).  In 9 months of being on Anastrozole, I have now wrecked my once healthy bones. 

DebbieOs and I are in regualr contact.  Our refrain whenever something goes awry is "And remember Deb- we have the "GOOD" kind of breast cancer"!  She's had her share of annoyances, too.  We get on the phone and say wait until you hear this one!  Then we make each laugh about what's going on with us.

The choices I need to consider are:

1.  Switch from Anastrozole (Arimidex) to Tamoxofin and take calcium OTC supplement.  Apparently, Tamoxofin confers some better result regarding bone density loss.

2. Have an intravenuous type calcium supplement every six months or every year.  (Prolia? or Zometa).

3. Continue to take Boniva once a month and the 1,200 units of OTC calcium supplement.

My fear is side effects from the side effects mitigation meds:

1. I take Anastrozole to prevent the breast cancer recurrence. 

2. Then I take Venlafaxine because if I don't, all stimuli comes at me in super fast speeds due to the Anastrozole.  I get hyper/anxious. 

3.  The Venlafaxine gives me bloody noses (mostly very small ones) about 2-3 times a week.  Sporadically, the lovely pupurras (the bleeding under the skin show up). 

Now I need to add to my regimen because my lumbar spine is almost out of the osteopenia range and into osteoporosis. Is osteoporosis reversible at all?  Or all that I can do is prevent further loss?

DebbieOs was tellling me her MO won't recommend Prolia because she has had patients that suffered jaw pain (as in daily and severe- like lock jaw and it's permanent).  My onc also warned me of that side effect with Prolia.  However she only had it in a patient that had to take it every month due to metastatic cancer.  If I recall correctly, there was a side effect with Zometa, too.  The problem with the injections is that if one has a bad side effect from those- it's already in you for 6 mos. to a year.  You can't take it back or stop it. A monthly pill is looking a bit more appealing.

I was cracking jokes with my onc about this whole deal.  She was chuckling and said that I always have such a positive attitude.  I really like my onc.  She lets me take an intermediate step until I research or feel more comfortable about the other interventions. 

I'm going to Hawaii next week! I had planned that a coule of months ago.  I realized that when my one year anniversary with bc was approaching, I needed to stop delaying a vacation while I've still got my health. 

I am now not supposed to lift heavy objects and need to be careful bending.  I am going to milk this for all I can! 

Wren44

Deborah, What a bunch of hard decisions! I've heard that Tamoxifen builds bone and anastrasole decreases bone density. I would really research the Boniva and other drugs side effects. My MO did have me start calcium + vit D3 when I began the anastrasole. If you take calcium, your body can only absorb about 400 at a time, so split up your doses. Not all antidepressants can be taken with Tamo; some decrease the dose. Your post really makes me wonder about waiting 2 years to retest bone density. I had osteopenia going in. Good luck with your decision making. - And ENJOY Hawaii!!

janiceg415

Deborah2012     WOW is all I can say, what a trade off.  Take the aromatase inhibitor returning which decreases bone mass which leads to osteoporosis.    My MO told me to take 1200 mg of calcium as soon as a began the AI.  My question is - when you go off of the meds is the osteoporosis permanent or can you rebuild bone mass with supplements & exercise?  Or does it depend on our age, etc. 

I have to wonder since I had dcis, on one side , if it is really worth taking or do I just take my chances??  What to do, what to do?????   I can certainly feel the joint pain in hands and feet when I get up off a chair I walk like an old person (I am 55, so I guess I am not that far off) wavering to and fro with my gait. 

It seems so long ago that we were here giving each other comfort and support during that infamous month of February.  HERE'S TO THE FABULOUS FEB MXers!!!  One year, we've made it!

Alicethecat

Hello Deborah2012

I'm sorry to hear about the osteopenia with anastrozole. That really is a challenge - particularly as you had DCIS and not IDC. Does make you wonder whether it is worth it or not.

My onc said Arimidex (anastrozole) would only give m a 2-3% benefit as I am PR+ but ER-. Had to come off it after a month as I had bad side-effects with it (itching skin, felt like I was going to pass out).

Meeting the onc on 22 February to discuss starting another one now, starting after Herceptin has finished or not starting another one at all.

Not sure what to do. Minded towards not taking anything but I am ER- whereas you are ER+ and PR+. It's a very difficult decision for you.

Please let us know what you decide!

Best wishes

Alice

DebbieOS

Hi Ladies,

Hey, I hate to be a Debbie Downer here....but....I need to make sure you're all aware of something that I was completely unaware of.  All seemed to be going fine, but just within the past 2 weeks, I saw my MO.  As she was examining my breasts, in particular the MX saline reconstruction breast, she got a look on her face, and exclaimed, "What is this?  What is this?"  My foob is so knobby, that although I noticed an additional nodule growing, it never, NEVER, EVER occurred to me that I could actually have a recurrence in the removed breast!  I mean, "Hey, it was removed, right?"  Anyway, I am having an MRI on Tuesday to see what it is...it most likely is a fat necrosis, but it could be a recurrence too.  I joked to the MO that I just thought I was growing another nipple!  Hey, I figured it was a little higher than the other nipple, but, hey, a nipple's a nipple!  Haha! 

Anyhow, I just wanted to call this to all of your attention, as I thought that once an individual had an MX, and 0 nodes involved, you were "done" with that side.  I hadn't a clue that there is a possibility that it could come back in your foob!

Well, wish me luck, FFF'ers, and please take a good look at not only the boob side, but your foobs, as well.

Wren44

Thanks for the heads up. And best wishes for finding something harmless. I think fat necrosis is pretty common.

DebbieOS

Thanks, Wren44....I'm not toooo worried, but concerned nonetheless.  But, again, somehow I just thought that once a boob was gone, it was really gone, not just somewhat gone.  I keep learning through this journey....

Alicethecat

Hi DebbieOS

Sorry you're going through this.

I'm keeping everything crossed for you!

Best wishes

Alice

Nel138281

DebbieOS,

Only good thoughts coming your way. 

Be well

nel

DebbieOS

Thanks for the well wishes, Nel and Alice....you guys are great!

november

Hello ladies

What a difference a year makes. Hope everyone is doing ok

Nel138281

november,

Hope you are well.  A year later, it all just seems amazing.

Be well

Nel

DebbieOS

Hi FFF's!!!!

It's "normal and benign!!!!"  YAY!!!!!  I still don't know what the lump is....I asked the nurse if it was a fat necrosis or something else and she stated that the only thing the MRI said was that it was "a post op."  ????  She even read that part of the MRI report and that's exactly what it said....????  I'll find out when I talk to the doc later.  I still think it's just my body just creating a new nipple....

Nel138281

DebbieOS

YEAH!!!!

Alicethecat

Fantastic news DebbieOS

Congratulations!

Alice

november

Hello Nel

I am doing just fine. Hope you are too.

Congratulations Debbie OS

Dx 11/9/2011, LCIS, Stage 0, 0/7 nodes

DebbieOS

Thanks, Nel, Alice and November!!