Class of 2010

hereandnow

Thanks lovely Linda,

yes you're right, this bloody thing is no respecter of anything. I'm in Australia by the way. The breast care nurse has told me she will be with me through the whole thing, surgery, chemo +/- XRT. Amazing the dedication of these special people. She organised for me to be linked in with a couple of different support groups here - one's been in touch and sent me information packs, and  a journal into which I can write appointments, treatment, journal thoughts, contacts and expenses. It even has a few pages of card holders for all the people who give you cards.

Isn't it amazing how much thought goes into making this easier? This discussion forum is a wonderful resource, and yes I will have a whole bunch more friends.

Dutch girl6 -my surgeon has a policy of removing drains after 5 days (maybe also because I have a tissue expander in and they worry about infection). When I see her on Tuesday for a follow up - if there has been too much of a build up of fluid she may have to remove some seroma with a needle. I hope your drains can come out tomorrow - it's just a bit more comfy without them.

Good night (I got some sleeping tablets today cause I haven't been sleeping so well) looking forward to a big snooze 

elen

I'm 42 .. mother of two teenage boys .. one of them 18 .. (he has played a vanishing act since the dx)...

I just had 11 more nodes removed since I had micrometastases in two during the sentinal node biopsy. . So, two surgeries in three weeks ... I"m tired, irritable and going back to work tomorrow .. which I do NOT want to do .. but if I don't work, I don't get paid.

During the last surgery, they put in the port for chemo at the same time .. then went to oncologist who says they "might" do chemo -- waiting on test results.   

At any rate, it's been an interesting couple months to be sure. 

 I think I've reached the anger part of the process.

Keep trying to remember the positive ... it's hard ..

Teka

Hi! dutchgirl6,

Welcome.   Good luck with your surgeon.

etk02038

Wow, lots of new ladies. Welcome to you all! I got my oncotype result back yesterday with a score of 12. So no chemo. We talked about hormone therapy. I assumed it would be just Tamoxifen for 5 years but she was suggesting 2 years and then maybe lupron or ovary removal. Boy something else to think about. I have a feeling Tamoxifen might be a problem due to fibroids and endometriosis. I still haven't had the BRCA tests either. If that is positive I think ovary removal might be best. The decisions never end!

KatieMom

Welcome everyone.  I am finally seeing the medical oncologist today (Dr. Next) and will post later with (hopefully) results.  You guys make me laugh with the breast health nurses.  I was assigned one at the beginning who calls me religiously with NOTHING to say or add.  If I ask a question she just tells me to call the doctor.  If I whine about appts or the like she defends the doctors.  My DH cracks up every time she calls.  She also has a very thick accent so is hard to understand.  It has become a running joke.  The information found here is WAY mo' bettah than she can give.  

Went for a very hard and fast bike ride last night.  I ride with all men and all racing guys, who happen to be in the start of their racing season right now.  Ughhh, it was hard.  But I got nice and tired which led to a very good sleep.

Katie 

KatieMom

Okay, finally saw Dr. Next.  She was very nice and explained everything very thoroughly.  I knew most of it already due to this place!  Anyway, oncotype and BRCA both ordered adn three more weeks to wait.  I am so tired of the waiting!!!  

Katie 

LINDAGARSIDE

Ellen!  YEA...low onc score.  Great news for you!  One step at a time...right?  Onwards and upwards.

Katie...you finally met with Dr. Next!  Wow...congratulations.  Now, back in line for the waiting game.  LOL.  It just doens't end, does it?

I had to WAIT today with a FULL bladder for an ultra sound.  I'm not going to lie and say I didn't have an accident because I absolutely did.  Good thing I wore a pad...but it must have looked quite funny to see me bolt across the waiting room and into the bathroom...and then swearing.  LOL.  We really aren't that great at waiting, are we? 

Hopefully no surprises on the ultra sound and we can move forward with the rads next week.  (again...the waiting...)   

etk02038

Katie, glad you are moving forward even if it's on to more waiting. My BRCA won't be ordered for at least 6 more weeks when I see oncologist again. I don't get it!

Good luck with your ultrasound results, Linda.  

Dublin4

hello all!  I am back from the hospital.  The surgeries (both) went very well and I come home yesterday.  I am sore and tired but overall feeling pretty good.  Still waiting to her the test results...just called still not in.  Waiting, waiting, waiting....seems to be a theme.  Oh well I am glad the surgery is over.  Lets see whats next.  Wish you all the best.

irish47

hey Linda,

Jeez, the waiting is terrible.. ( same to you Ellen and Katie). Stop telling people I am 48, 47 sounds better!  Elen, hang in there, we all have stories here, mine is trivial I think but isnt it so good to be able to have all this support?

Dublin 4, wish you a good recovery.

My only news is that is well as meeting medical oncologist next tuesday, now have an appointment with radiation oncologist Friday 12th march.. am getting there slowly.

LINDAGARSIDE

Hi Irish...who is still 47 ...glad things are progressing forward for you.

Dublin!  So glad your surgeries are behind you...healing ahead.  Onwards and upwards, right?

Is anyone else feeling like me and can't be bothered to put on makeup lately?  It seems to be the last thing on my list of priorities these days.

Ezscriiibe

Elen said: "Keep trying to remember the positive ... it's hard .."

::sigh:: Elen, I don't know about others, but I sort of have an issue with this philosophy. I think sometimes we owe it to ourselves to allow ourselves to be pissed.

This is tough row to hoe. I take cancer's invasion of my body as a personal affront. I will not let it think I will just smile and say, "Oh well, just another day in Happy Town!"

Now, I don't believe in being a poopy pants, but I think crying is highly productive (it helps flush certain hormones out of our system that are impeding our mental state), and I think anger (properly directed) can give strength of spirit.

If I am positive about anything, it's that this freaking invader will not get the better of me!

Sorry -- reading that back to myself it feels like a "soap box moment"! LOL! 

Anyway, Katie, what's your gut feeling abou DrNext? Do you think you will have a better rapport with her? Do you think you can trust her better than DrLast? I certainly hope so! You SO deserve to feel like you have a partner in this, not someone you think you need to second-guess all the time!

Linda, I can feel your pain with the full bladder thingie! Question: Have you seen a urologist? I put off seeing one for years, figuring that weak bladder was just part of getting older and such.

When I finally broke down and saw one, he wrote me a 'script for Vesicare. OMG!! It gave me a life back where I don't have to feel like if I don't get to the potty RIGHT NOW, I will end up embarrassing myself!

I would give up chocolate before I would give up my Vesicare! (well, maybe I'd give up tapioca pudding. . . .)

dutchgirl6

Hello all.  Good news at the follow up today, no cancer in the nodes, and the drain is gone. Yippee.  Now life can get back to normal, whatever that is, for the next few weeks till the chemo starts. 

Elen, I can relate to your anger phase.  I reached a point where just wanted to scream at the next person who told me that I was a strong woman, and I can get through this, yada yada yada.  I have decided that it's ok to be angry, or whiny, or sad, whatever you need to get you through it.  I know who the people are that I can be really honest with, and who I need to sugar coat things for.  I work in a retail environment and I know that when I go back to work tomorrow I will have to play the "I'm fine thank you" game when what I really want to say is "Well, I have cancer, my arm hurts, my shoulder is numb, and I'm not sleeping very well, thanks for asking".  Whew, glad that I got that off my chest.   

Sorry ladies, but I think that I needed that.

As far as the waiting, I have decided that things around here work in three week cycles. That seems to be the general waiting time for appointments and surgeries.

Katie, is her name really Dr. Next?  Was your previous one Dr. Last?  Too funny 

LINDAGARSIDE

YEA Dutchgirl!  Great news for you.

Elen...no way getting around it.  This is all crap and each of us has a right to be right picked about it. And to have to keep working when you probably feel very tired...I can't imagine.  And needing to spend some time with your son who is wanting this all to just go away...my heart goes out toyou...big big but gentle hug your way:  ((((((((( HUG ))))))))))

I am guessing we've not heard from GP lately because of her mom.  My heart is thinking about her...our pink peep...and hope she will be back soon.

Michele, I've been under the care of a urologist (and a physiotherapist) for bladder issues.  Have had two bladder surgeries (and gall bladder, speaking of bladders).  All of this is one of the reasons why chemo would be very hard on me, if I had to take it.  I've got a forever prolapsed bladder (and bowel) due to having a hysterectomy very early (31 years old).  My uterus was unusually large and left quite a space inside.  It seems my organs started to fight for the space and the rest is history.  LOL.  I always say I am "really healthy" but when I just read what I wrote it sounds like I am a sickly person.  In fact, for over 23 years of working for the government I've had less than 2 weeks sick time.  (I used vacation time for surgeries/recovery so I didn't lose any pay...as I was a single mom for about 10 years and couldn't afford to be sick!).  But thanks for the tip about Vesicare...I will look it up and see if it might help me.  Thanks again.

LauraM

Katie - Sorry about the long waits, they really do suck.  My BRAC test was back in a little over a week so hopefully you will have as good of luck. 

Michele, Elen and Dutchgirl - I understand all of your anger.  I think even though I thought I had accepted that I have bc, I knew in  my mind that I was having a dmx and it would be gone and then I would just get stronger and go back to work and carry on.  Then on Tuesday I get told that there are two other area's of micro invasive cancer that needs to be taken out and my body and mind just shut down.  I don't think I had really accepted that I had bc.  I woke up at 3:30 this morning crying to myself that OMG I have cancer, like I hadn't already known for the past almost 4 months.  I try not to linger too long on the negative but all of this is just so much to deal with sometimes I agree that crying helps to cleanse the soul.  I also get all the time that I am such a strong women...etc..ugh I seems like a curse now.

Well tomorrow is another day and I am determined to go into it positive and save the crying for the middle of the night.

 Sweet dreams to you all.

KatieMom

I coined Dr. Next because it just seemed like it was a never ending stream of going to the Next doctor.  I have really liked all my doctors and really do trust what they are telling me.  It just takes so damn long!  Today Dr. Next very patiently explained and gave me literature and a DVD on the BRCA and the oncotype.  She asked me pointedly what I would do if the BRCA came back positive.  I said I would have my ovaries and tubes removed which is what she is pushing for.  I don't think I would take the girls off, yet.  She said MRI and mammos yearly.  I can handle that.  BUT, I won't know that for another bunch of weeks.  Waiting, waiting.

So about that "Hi, how are you today," thing.  I teach second grade and have to be UP everyday.  The parents in my class know I have bc but I am not about to go into detail.  They think the surgeries fixed it all and I am on my way to a healthy recovery (which I may be).  However, my skin almost bristles as I respond with , "oh I am great, I feel great."  Physically I do feel great.  I have no issues that I can feel right now.  But what am I about to face?  Well, I don't know.  Waiting waiting. 

I guess no comments are any good from "non cancer" people.  I am fed up with "if you can handle it, anyone can.  You are SO strong."  And, "I don't know how you are dealing with all this." I don't really know either.  Waiting, Waiting.

You guys are the best because you know what I am going through.  You know what all these tests are and what they mean.  You know all about the numbers and the acronyms, and you know what's in my head.  Waiting, waiting.

But the very worst thing that Dr. Next said today was that I have to cut way back on the alcohol consumption.  I knew it, but really didn't want to hear it.  She said 2 glasses of wine per week.  ugh.  I told her I was drinking about 4 per week, when the reality was just slightly higher... it was only a little white lie...

Thanks Pink Peeps.

Katie 

LINDAGARSIDE

Katie...are you serious?  Cut back on our wine?  I am in shock.  I don't know if I should ignore this caution or ask my doctor about it. Boo Hoo.  I enjoy a nice glass of wine every night.  I don't usually finish the one glass...but I like to sip it regardless.  Sometimes I even have diet coke and white rum.  I like that too.  Darn it.

I was outside doing some gardening (planting primroses etc) and an elderly neighbor came by and we had a chat.  Turns out she had IDC in 1982!  She showed me her scar and it was almost identical to mine except you could hardly see hers...almost the same color as her skin now.  She is now 78 years old!  We now have a cancer survivor of 28 years.  Isn't this good news?  I asked her how she manages and she says every night she puts on some real relaxing music and with her eyes closed, she imagines a little "lady pac-man" inside her body, visiting every area...seeking out the odd little cancer cell and this little lady pac-man thing quickly gobbles up a cell that looks suspicious.  She says she always feels strengthened afterwards and then doesn't worry about it.  She really believes our brains have a lot to do with how we recover and she is a firm believer in positive thinking.  She also walks a lot and keeps active.

Isn't it great to meet someone who had IDC and a lumpectomy so many years ago?  Naturally she knows that drugs and surgery played a critical part in treatment as well...but we were talking about recovery and how to cope with the ever present elephant in the room.   Anyway, I wanted to share this with my pink peeps.  

Ezscriiibe

Linda, so sorry you've had such bladder problems! I know what it's like having a hysterectomy young. I was 27 when my uterus was removed. I was fortunate to not have any real problems until my mid 40s. Hope that something like Vesicare can work for you. It pretty much "gave my life" back to me! If you know what I mean. . . .

LauraM, I've done that too, wake up in the wee hours and just laying there in bed in tears over it all. When people ask me how I'm doing or mention that I look 'great' (which I know is a lie), I simply say, "Physically, I'm doing fine. Emotionally, it's touch and go. For both I have my good days and my bad days."

etk02038

Katie..I feel your pain about cutting back on the wine. I have done the same. I try to keep it to 2 glasses on the weekend. It's hard when my DH brings home a double bottle of wine.

Linda..thank you for sharing your neighbor's story. It is so uplifting. She is right a good positive attitude can be the most important thing after all the medical stuff is over. It takes daily practive though. I broke down and cried last night. My husband doesn't get it, he thinks I should be happy that I had a low score and no chemo. I am of course but that doesn't make the cancer and all the stress go away. 

Have a good weekend ladies...It is supposed to be in the 50's today here!! 

Dublin4

Good Morning ladies,

I got my path report last night, finally!  Anyway, it was great.  No lymph node involvement, clean and clear.  Final report also showed the cancer was very small 6mm.  Dr. told me last night that my prognosis is excellent.  No radiation and most likely no chemo.  I will be taking the onco DX test in a few weeks.  But he said because it was so small, no lymph node involvement and ER+ that Tamoxifen would be my most likely treatment.  Does this sound right?  I know every cancer in everyone of us is different, but wow....just wondering....I am feeling a little stronger everyday.  Can't wait to get the drains out...although the thought of all that stuff coming out makes me happy that I have them and it is not backing up inside of me.  What a wild ride the last month...You are all such an inspiration and help.

Enjoy the day.  The sun is shining here and I know that I will enjoy today!!!!

Blessings,

Dublin 4

Teka

Hi! Dublin4,

GOOD FOR YOU!

LINDAGARSIDE

Hi Dublin...so glad about your report.  Congratulations...you must be feeling quite relieved.

Dublin4

Linda,

Relieved, yes!  The sun is shining here and it is totally fitting for me as I am sitting on my bed with the blinds open and the light shinning in.  I feel like I have come out of the dark and into the light.  Feels really good.  I know that I will continue the roller coaster ride for awhile (although the busy breasts) are no longer a passenger on board!  I feel like knowing that the cancer did not spread and my nodes were all clean and clear is HUGE for me!  Thank you!

Hope all is well in your world and I loved the story of about your neighbor!

Ezscriiibe

That's great news, Dublin!!

You are virtually beaming! I LOVE to see that!

AMP47

What a great story about the 78 year old women.  I agree with her-my pac-man cancer seeker outers are on the job 24-7.  My sister in law had breast cancer thirty years ago, refused chemo and radiation, is a heavy smoker and is very active today.  I have read this thread because for some reason it pop up on my blackberry?? So, I followed to the page 13  because our dx is similar.  Did I miss your onco score?  Mine was 17 with 10% chance of distant recurrence using tamo but is reduced to 8% because of Arimidex.  Just curious if you had your onco test yet. 

LINDAGARSIDE

Hi there Amp 47.  No, I did not get an ONC test done in the end.  I was already at 97% so was not thinking chemo could improve my odds that much.  I also have other medical conditions which would be negatively affected by chemo...ultimately making me sicker than the cancer in the end.  While I would love to know the score...it is about $4,000 to have it done in Canada as it is not covered under our medical system yet.

I am on tamoxifen now and will start radiation on Monday.  Not sure how long I'll be on tamoxifen yet...maybe a few years or maybe 5?  I meet my oncologist in a few weeks and will be going over all of that with him then.

Can I ask how old you are?  I am postmenopausal...58.  This is a good thing I guess in the world of cancer...but honestly I'd love to be in my 30's again (but of course without bc!)  LOL.

Your sister-in-law is quite amazing, isn't she?  I am assuming she had a lumpectomy.. or mastectomy??

etk02038

Congratulations Dublin4! It must be such a relief.

Cinnamon69

Hello Pink Peeps!  Looks like a lot has been going on since I last tuned in.  We lost power due to a nasty wind storm last week.  First day of radiation I woke up to no power, a bad cold and my period!  Good thing we have a generator after last years ice storm.  After one week of rads my skin is still fine but I am so tired I can't get through a day without a nap, and I hate taking naps.. always have.  I think it's just the entire bc experience has finally caught up with me.  A lady at work got me a magnet that says "Voted most likely to go psycho on your whiny ass".   How in the world can someone complain about something small in front of me?  I understand everyone has crappy days but seriously go somewhere else to complain, ahhh I feel better now.   

Oh and those with teenagers... my youngest put in earings to gauge her ears, I caught on last night and almost had to hurt the child!  She waited about an hour or so then took them out, was this child trying to make me crazy or what?!  I would have yelled the house down and got my husband involved if they were not out this morning.  She just left for work so I will go find them and throw them away!  Why again did we have children?

It's in the 50's today and sunny, yeah!  Have a good day everyone!

Cinnamon  

AMP47

Linda I sent a private message to you.  I am 62 - 61 at diagnois.   Have been on
Arimidex for five months and was on Femara for two month prior to Arimidex.  Femara was a very difficult drug for me.  Arimidex is hard enough with lots of aches in my joints actually all over my body.   Not sure I can take it for 5 years.  Very true about being post menopausal and I agree with you would like to be in my thirties again and of course without this disease.  My sister in law had a complete mastectomy.  I still can not fathom not accepting treatment..  I am not that brave...

LINDAGARSIDE

Hi Pink Peeps...how are we doing?  Many of us had appointments today.  Here is how mine went:  I got my tattoos...and interesting stickers and "x" marks in various spots...and am all set...except I still don't know when they will start.  LOL.  Perhaps next week?  April 8th will be 12 weeks since my surgery and the radiation should start within 12 weeks in order for it to be much good (or so I'm told).  The results from my ultra sound are back and everything is clear.  I'm so thankful!  When I was on my back (during the marking process) I happened to look up and see my breast in the reflection of something silver.  It looked quite awful...and seemed to be shrivelled up somehow...part of it sinking into where the tumor was taken out....it is the first time since all of this started for me that I actually had a moment of "OMG"...what on earth has happened to me??  Interesting experience.