Class of 2010

Apple1965

Hi Ladies, Thank you for your great explanation about the sentinel node biopsy.  

Today, I took shower first time after the surgery.  I used Tea tree soap and washed my body gently.  The incision was about 5cm (my tumor was 1.2cm) and my breast volume wasn't much changed though I had small breasts.

I am going to take the Oncotype test soon.  http://www.breastcancer.org/symptoms/testing/types/oncotype_dx.jsp  Has anyone taken the test?  Did you all have the bone scan?  I didn't have one.

LINDAGARSIDE

Hi all,

Jakhope (and anyone else who is interested)...the cancer society here gave me a book and it has been so helpful!  It has all the exercises in it as well as information about every type of breast cancer, diagnosis, understanding your path report etc etc etc.  I really recommend it as I can't imagine how lost I'd feel without all of this information.  The book is called "The intelligent patient guide to Breast Cancer" 4th edition... Ivo Olivott, MD; Karen Glemon, MD; David McCready, MD; kathleen Prtichard, MD; Urve Kuusk, MD and edited by Cheryle Edwards, MA.  On the inside jacket it has their e-mail: info@ipguide.com and their fax number is 604-876-9334.  It is distributed by "Gordon Soules Book Publishers Ltd"  (books@gordonsoules.com )  Here is the inscription inside the cover:  "This book is dedicated to the thousands of women who have lived and are living with breast cancer and who, through their stores and their strength, have taught us so much". 

irish47

Hi Soccermum,

I agree with Jakhope, none of this class of 2010 has needed chemotherapy so far but you will get loads of information on the other forums.  let us know how you are doing!

Cinnamon, Best of luck with your results, we will be waiting to hear.

Jakhope, I saw your post about your upfront payment and your health insurance..  This is one topic which makes me SO mad!  I am fortunate to have fantastic health insurance, everything paid direct, no upfront payment, nothing.  Anything my doctors order, the insurance company pays out in full.  If you have insurance, why should there be an upfront payment?  I saw on another forum where somebody's doc wanted a CAT scan and the insurance company wouldn't sanction it??  Give me a break.

Having said that, when I was told I needed an urgent mammogram I phoned around the hospitals, and because of the medical insurance got one in a private hospital the very next day. (In Ireland everyone pays a tax direct from their salary to cover public health treatment).  And girls, got the appointment for the mammogram in the post for... wait for it, 29th March.  Once you actually get in to the public health treatment system the service is second to none, but a three month wait list for a mammogram for suspicious symptoms??  I feel so mad that people who can afford the private system can jump the queue (although thank God I could).  And what right has any insurance company got to question the cost of a test that a doctor has ordered?

Ok, have got that off my chest, pardon the pun :-)

soccermom97

yes, unfortunately I was told it is a 100% guarantee for total body hair loss =( thanks for responding and I will try a post somewhere else!!

Dawn

1marmalade1

Hi:

I guess I am also in the class of 2010 - diagnosed 11/11.  I,   too,  am having chemo first (4AC, 4T ), then surgery, then rads.   I had my head shaved 2 days after my 2nd tx on Jan. 6 (guess that makes it 23 days after 1st).   It takes a bit of getting used to, but overall, it isn't as bad as you think.  Maybe for fun, you and the kids can get identical hats you can wear when you go out together - that way they'll think everyone is looking at you all wearing the same hat! lol   And  with AC, you will lose your hair.  Just try to have a little fun with it, in terms of hats, wigs, etc. 

Ezscriiibe

Marmalade, hugs to you and sorry you had to join our group!

A close friend of mine who had Non-Hodgkin's Lymphoma went ahead and shaved her head prior to her treatments, too. She said it gave her a bit of control and gave her and her family some time to adjust. 

jakhope

My insurance. I did not explain correctly. I do not have to pay $5000.00 up front, only after my co-pays and I pay 15% of treatments, if I reach that amount of $5000.00 then my insurance will pay 100%. I do have good insurance and I am very thankful for that. The nurse when I checked in just made some crappy coment about the fact I would have to pay any I guess. I am not going to worry about that now.

I had my markings for radiation today. Three small tatoos one in middle lf chest, and one on each side of rib cage.I had a cat-scan too. I go on Friday for x-rays and between it all I will be marked where they will start radiation next Monday. My under arm is still a discomfort when I move my arm.I called my surgeon for excersises and they said no, they didn't have any, just use your arm as usual.  

Still have not had the oncotype DX test. my Radiologist said as soon as my specimens are returned from Vanderbilt they will be sent out for this test. Should be back this week and sent this week. The results take about two weeks so on with radiation for now and pray that my rating is low and that chemo stays out of the plan for me.

jakhope

I believe the oncotype test will be your specimen from your surgery sent out for the test. It takes about two weeks to get your results. I have not had a bone scan or any other tests of met. 

jakhope

Linda- Thank you for that info on the book from the Cancer society. I just emailed them to see if I could get it for myself. Thank you. You have been so good with info and resources. The cancer society did send me some info but not that booklet. A large one on nutrician.

LINDAGARSIDE

Hi Jakhope...I have my book out and I'll try to describe the exercises for your arm when you've have any lymph nodes removed:

1) Lie on your back with your knees bent up.  Take a broom handle and hold it in your hands across your body.  Straighten out both arms and put the broom stick in three positions:  at your waist, above your head and then with elbows straigt, back over your head until your hands (knuckles) read the floor.  Repeat a few times.

2) Lie on your back with your knees up.  Clasp your hands together behind your head with your elbows bent.  Try to stretch both arms so your elbows touch the floor.  Bring your elbows up in front of your face, with your hands still behind your head and touch your elbows together.  Repeat a few times.

3) Stand up and put your hands over your head and then clasp your hands together.  Using your hand, gently pull the affected arm slowly over your head as though you were going to do side bends.  Do this slowly and steadily a few times.

4) Stand up, facing a wall.  Back up about 8" from the wall and using your arms and hands, "walk" your arms slowly up the wall as far as you can stretch.  Repeat this a few times.

5) Get on all fours like a dog.  Slowly lean back on your feet and , with elbows straight, lower your head to the floor.  Repeat a few times.

6) With feet away from the wall (about 2 feet) put your arms out to touch the wall and bend your elbows and bring your forehead to the wall.  Keep your back straight.   Push yourself back and forth as though you were doing "sit ups"...but you are standing instead.  Let your arms do the work here.  Repeat a few times.

 The book also has a few tips for preventing lymphedema.  Not sure if your are interested in this or not...but if you are, let me know and I'll pass it on.  One of them is to avoid haning blood pressure taken, blood drawn and injections or vaccinations or intravenous lines started in the involved arm.  If both arms have had lymph nodes removed, alternate arms for use...etc.

irish47

Hi all,

have an appointment with my Gynae today to have the Mirena coil removed because my tumour was PR/ER positive.  I have had it for 6 years, am on my 2nd one. I absolutely love it, it stopped my periods completely and I had absolutely no side effects.  I have read  the posts about it an another forum  here and have done a lot of research. I suppose I know I am doing the right thing but there is some ambiguity around the whole area. Still thinking am I rushing into things by having it removed today?  I am sure that sounds ridiculous as the Mirena releases small doses of progesterone which could 'fuel' any cancer cells remaining, and I will keep the appointment but despite all that has gone on over the past few weeks am very upset about it.  Illogical or what?  My husband thinks I am crazy!

Ezscriiibe

Irish47: Illogical does not equal crazy. Some crazy people can be surprisingly logical!

Update: My tumor report came back. Crap. I forgot to ask what stage. . .

Oh well, it was 2.2cm x 1.5 cm, or roughly 1 inch x 3/4 inch.

The permanent biopsies of the sentinel node do not show cancer cells, just as the frozen samples did not during the operation. That was good news.

More good new, the margins appear to be clear and he said there were "clean" margins all the way around.

I am scheduled for my first meeting with a medical oncologist on Friday, January 29, at 9:30 a.m., and a radiation oncologist on Thursday, February 4, at (I forget the time. afternoonish, I think).

He said we have still not gotten the HER2/neu report back yet, but the ER/PR was ER+/PR-.

I am also still waiting on my genetic test.

So. Moving along, nothing to freak out about yet!

LINDAGARSIDE

Ezscriibe...wonderful news...congratulations on clear/clean margines and no cancer in your nodes...yahoo.  And you are right...we've got nothing to really freak out about, for sure. I had lunch today with an incredible woman.  She had cancer in her breast but it wasn't "breast cancer"...it was a large tumor (size of a grapefruit) but it was adnoid cancer (or something that sounds like that)...and it was growing in her breast!  Her lymph glands were clear but she had to have a masectomy on the one breast due to the size of the tumor.  The specialist gave her a hug recently and said he didn't want to see her again...because she is now 5 1/2 years past when she was first diagnosed.  Apparently her cancer has come from "somewhere" in her body but so far they haven't been able to figure out where...she has bone scans, brain scans etc etc etc...but nothing yet.  She has a great attiutde and has really learned to live one day at a time and embraces joy...quite amazing really.  It was inspiring just to have lunch with her.  I wanted to share this with all of you...especially those of us who are worried about the future.  Nobody knows whats ahead...but we know we are here today...and that's what counts...right?  Have a good one! 

jakhope

Linda- thank you so much for the exercises you wrote out for me. I printed them and am working on them. I also bought a book today to help me and ordered on Amazon the one you have. How are YOU doing? Are you gearing up for radiation, as I am?

Ezscriibe...that is great news for you. Nothing like nothing to get freaked out about!

Irish 47- this coil you are having taken out. I have never heard of that before. Was that a birth control method or a treatment after your surgery in 2001? 

Anyone started radiation yet? I start next Monday.....My underarm hurts, I do not want it to hurt any more! OK, that was my whining for the night! I told my husband when I see the news and what is going  on in Haiti, it shuts me up,  

LINDAGARSIDE

Hi Jakhope, boy you are getting fast treatment for your rads!  I'm still waiting for the cancer clinic to call me. Apparently that call will come by next Monday.  I hope so.  The waiting part is the hardest, isn't it? 

I think my breast might have an infection as it is hot and most of it is quite red.  Does anyone else have this?  I will see the Dr tomorrow, just in case I need an antibiotic.  Rats.

But you are right about the situation in Haiti...it makes all of this seem so trivial.  I was watching the news and I wondered how many dear pink sisters we have over there...and they are now scrambling for water...never mind when they are going to get their rads or surgery or whatever...they are just trying to survive.  We are certainly fortunate. 

I'll let you know what the Dr says tomorrow.  Glad the exercises are helpful! 

irish47

Ezscriiibe,  fantastic news!!  I am sure you are so relieved.

Jakhope, yes the mirena coil is a form of birth control but the reason I had it inserted was because of really bad period pains and PMT, and as a result none of that for the past six years.  I was thinking I had enough to be dealing with at the moment without all that crap starting up again.  But as has been said here, just think of what is going on in Haiti for instance and perspective slaps you in the face. It was just an illogical and silly response on my part.  I mean come on, a PR+ tumour and debating removing a device which releases progesterone into my body??  Anyway done and dusted now so that's my little tantrum over.

Linda, hope your infection, if that is what you have, clears up quickly.  You are such a mine of information, thank you!  Am also going to order that book from Amazon.

About the radiotherapy, my Doc told me 4 to 6 weeks after surgery before I would be starting, he said this was standard?  I am back to hospital overnight next Tuesday for the lung biopsy so will see him then and find out more.  One interesting thing the breast care nurse told me was that there are two types of treatment available.  One is the standard four to six weeks of outpatient daily radio treatment (or whatever is prescribed by the Oncologist) and the other is inpatient treatment.  Apparantly you are admitted, go to theatre and have rods inserted in the affected breast.  Then you get twice daily high dose radiotherapy for seven or more days, also depends on what is prescribed.  I know I would take the inpatient treatment for sure if I was suitable in terms of shorter timelength, no daily commute, etc. Has anyone else been told about that option?

jakhope

Hi all, how are we doing today? Linda did you see your Dr? I hope you do not have an infection. what did he say?

I have started back to work and it feels fine and I am glad to not have much discomfort. i am trying  to rest and also do my walking for 45 min. I know I won't be able to every day.

My radiologist said you can start radiation three weeks after surgery, and that is what it will be for me next week. since there is no plan so far for chemo, there was an isolated cluster of cancer cells around one node so they do not want to delay in treatment. I guess I am the first in the class of 2010 to start. I will report my experiences. Friday I go for some x-rays, part of planning, to start next week. I also meet for the first time next Wednesday with my Med oncologist. 

Hope everyone is having an OK day. 

  

Ezscriiibe

That sounds great, Jakhope. I have no idea when I will start my radiation therapy. I have my first meeting with the rad onc next week. The med onc is on Friday. But I think they also still want to wait for the gene tests to come back. Which should be right about the same time I'm 3 weeks out from the lumpectomy.

I'm not sure, but if I have a positive gene test, and we do the bi-lateral, I guess I won't need the radiation therapy? I really have no idea yet.

Please keep us posted as you go into your rad treatments!

LINDAGARSIDE

Hi Jakhope...you're carrying a big responsibility on your shoulders by being the first in our group to get radiation...we'll be watching you like a hawk.  LOL.

I went to the Dr today and he said that my breast was red due to fluid...like when your arm swells up from lymph node issues?  My breast is carrying extra fluid and is swollen and red...and I don't have any type of fever and so he determined it was not an infection.  I have to spend some time now and keep gently massaging my breast to help dissipate the fluid build up.  Makes sense to me.  Phew.

Ezscriibe, I'm thinking that if any of us have a positive Her test...we'll probably have to do chemo as well.  I certainly could be wrong on that point...but so far that is what I've read and what others seem to say.  I've not yet met with the oncologist so I won't know for sure until then of course.  Apparently if you have a Mx, you don't need radiation...but it wouldn't rule out chemo.  Sometimes my data or understanding is influenced by my personal situation and so don't put too much weight in anything I say...LOL.  I sure hope we're all Her negative.  It's so funny...some things we want positive...other things we want negative...but in the end...we all just want to get through this and live.  At least we all have the same common goal.  When this is all over I think it would be great if the class of 2010 could manage to get together and party...what do you say??  Hey, what can I say...I'm half Irish after all. 

Ezscriiibe

Lindagarside said: ". . . so don't put too much weight in anything I say"

What?! Girl, I'm writing down EVERYTHING you say and putting it all in my binder! LOL.

Michele

jakhope

ME TOO. LINDA, YOU ARE THE VOICE OF OUR KNOWLEDGE HERE!!! SO GLAD YOU DO NOT HAVE AN INFECTION.

 I AGREE. I WISH WE COULD, ALL SAID AND DONE AND WHEN WE ARE HEALTHY, WE ALL COULD MEET AND PARY. I'M IN!

OK, I AM GETTING NERVOUS AGAIN. MAYBE I HOPED FOR GOOD NEWS AND SPOKE TOO SOON. THE ONCOTYPE TESTING IS IN THE PROCESS AND MY DRS WILL GET THE RESULTS NEXT WEEK. MY RADIOLOGIST LED ME TO BELIEVE RADIATION AND HORMONE TREATMENT SHOULD BE ALL I NEED. HERE I GO AGAIN WITH THE WAITING GAME. THAT IS THE HARDEST PART FOR SURE.......

Cinnamon69

Good news: clear margins

Bad news: bigger and more aggressive than they thought it was going to be.... so chemo!

Now I am waiting for the Oncotype DX test results 10-14 days.  My insurance won't cover the test, small fee of $3,975!  We are appealing.  And we are waiting for the second opinion results which my insurance will also not cover because it is a vitual 2nd opinion $745!  Like anyone needs these issues while battling cancer.

Oh and the bc gene test was good, I won't have the guilt of having past this crap on to my girls.

My face is too fat to look good with a bald head!  :-) 

Thanks for the notes.  My arm feels great though I start PT on Monday.  My breast still hurt a lot!

 This is all so hard!!!

jakhope

Cinnamon69 I JUST GOT THE CALL THIS AFTERNOON ABOUT THE TEST TOO. I COULD NOT BELIEVE THE COST  OF THE TEST. THANKFULLY MY INSURANCE WILL PAY BUT THEY MAY WAIVE THE 15% CO PAY OF $595.00. YOU ARE RIGHT WE DO NOT NEED THIS STRESS ON TOP OF DEALING WITH WHAT WE ARE DEALING WITH! MY CO-PAY FOR JUST DECEMBER IS $1000.00. THIS IS NOT INCLUDING THIS YEAR'S SURGERY AND WHAT IS TO COME. WHAT HAPPENS WITHOUT INSURANCE? I WISH I HAD MEDICARE RIGHT NOW.

WE ARE HERE FOR YOU AND WE ARE HERE TOGETHER THROUGH THIS. WHAT EVER IT TAKES TO KEEP US HEALTHY AND BATTLE THIS BEAST WE CAN AND WILL DO. WE ARE STRONG IN OUR UNITY THAT THINGS WILL BE BETTER. 

LINDAGARSIDE

Hi Cinnamon and Jakhope and Irish...wow...if we could get paid for waiting we'd all be rich...right?  I think when we wait for results we fill our heads with dark thoughts.  OK...LETS GET RID OF THOSE UGLY DARK THOUGHTS NOW! 

HEY...DARK THOUGHTS...WE ALL HAVE AN IMPORTANT MESSAGE FOR YOU:  "BE GONE AND DON'T LET THE DOOR HIT YOUR ASS ON THE WAY OUT"

Ok, everyone...that takes care of that problem.  Now, about world hunger...what can we do?  Chemo is a drag for sure.  I am so sorry you are going to have to have chemo.  On the other hand...thank God for chemo...it saves our lives.  Today I was thinking, OK, if I have to have chemo, I'm going to get my head shaved by my daughter (she's a barber).  But before that, I'm going to pick out a couple of real sexy wigs.  One will definitely be a red head.  I might as well try to have a bit of fun with this...right?  I mean we've all been dealt an ugly hand...but why not bluff with the cards we've been given?  We're all going to look funny when we're bald...and some of us have no teeth.    LOL.

jakhope

Linda- you are great! My girl friend went down this road five years ago. she had a different wigs and they all had different names. She had a party and shaved her head. We all can, if we have to, go down this road with our heads shaved and held high.

Ezscriiibe

OMG!

I had no idea that test was so expensive and sometimes not covered! How can a woman make a real decision without it?! Wow. That sucks.

Now I have to call my insurance company back and see what's up with THAT. . . .

irish47

Hi all you guys,

More Insurance issues!  No, nobody should have this financial strain in this situation but have already had my rant on this issue. It is ridiculous though.  You can be sure those insurance companies have nice healthy profit margins.

A humbling story. An old friend, phoned me yesterday.  She had BC in her 20's,  did very well but unfortunately had a recurrence some years ago.  She is now in the palliative stage and has been through a hell of a lot.  Yet her phone call was all '' I heard your news, so sorry, anything I can do, lets meet up,  I can give you so much information'' etc. I was so touched.  Scary thing is, there were 4 of us in school, best buddies all the way through and have kept in touch.  I am the THIRD of the four to get BC. The other girl  is absolutely fine now.

Cinnamon, sorry to hear about the chemo but we will do what we have to do, right?  Am still waiting on my HER and oncotype results. How old are your girls?  Mine are 20 and 17.

Linda, that party sounds good!!  Three venues so far, Canda, USA and Ireland, or do we meet in the middle?  Think that is over the Atlantic ocean lol

LINDAGARSIDE

Hi everyone.... what about a cruise?  My sister is a travel agent and I'm sure she can put together something for us that is quite reasonable.  Let's shoot for something in the next 24 months.  We should have this behind us by then and give us something to look forward to?

Our medical insurance here in Canada is quite amazing...but I think that's because our taxes are so high.  Most of our tax money goes into the medical system.  So anything to do with medical is pretty much covered.  If you are at a low income level even prescriptions are covered.  Some of us have "extended" medical through work so we can get rebates on things like special masectomy bras etc.  Everyone has to pay into the medical system (I believe the USA is trying to get something similar) and you are not allowed not to pay.  If you go to the hospital and have no medical, there are forms you have to fill out to give you immediate medical and it can be as low as $20 a month or something like that (and you have to pay at least 3 months)...and you have to show you are not working and have no income.  I don't know all the details of premium assistance medical, and each province has it's own way of making it work...but basically over here in Canada there shouldn't be anyone who needs medical attention that isn't getting it.  Up until now I've been quite healthy and haven't had to use the system much...but now that I need it...I'm sure glad we have it!

I'm curious about something.  Maybe you've all been wondering about it as well.  We hear often about cancer coming back and it being more serious than the first time.  How does that happen if we keep getting tested on a regular basis?  I mean...if we get mamograms every 6 months and then every year...and go for bone scans etc etc...wouldn't any new cancer developments be "caught" in time??  Any ideas on this not so happy topic?

I've still not heard from the cancer clinic but apparently they will be calling me by early next week.  Stay tuned on that one.  My breast is not so red and lumpy any more as I've been massaging it (I used a vibrator and it works great!) and just like the Dr said...the redness is starting to go and the fluid is being drained.  Yahoo. 

Ezscriiibe

Met with my radiation oncologist today and he informed me that my cancer is stage IIa. and I think HER- (getting a little more info each time).

He said I will need 33 radiation treatments, but that he doesn't want to start them until after any chemo I may need. 

He did say that some form of chemo was lkely in my future based on the Stage and low ER+ score. ::sigh::

I will see my medical oncologist next Thursday and perhaps will know more then.

LINDAGARSIDE

EZSCRIIIBE:

CRAP to the chemo...boo hoo.  Who knows...we all might be needing it.  RATS.  I guess misery loves company...so move over and make room for your other 2010 classmates.  I have a feeling there might be a few of us.

 I just heard from the cancer clinic.  I meet with the oncologist for a consult on Feb 3rd and then I meet with the radiologist on Feb 11th...again for a consult.  I guess they have to meet with you and tell you what they are going to do to your body and why...before they start to chop or burn. 

Oh my goodness...what on earth is happening to all of us.  Don't you just feel sometimes like we're in a dream and at any moment someone will (hopefully) wake us all up and say, "Hey, sleepy head...time to get up"

Again...I'm thining ahead to our cruise.  When I'm having radiation or anything else I don't much like, I'm going to envision meeting my pink sisters in the class of 2010 in 24 months... as we cruise the high seas...without a care in the world...and no housework or cooking....just lots of food, music, games, drinking, dancing....fun fun fun.  Yahoo.

PS!!!!!!!  CONGRATULATIONS ON THE NEGATIVE WITH THE HER THING....APPARENTLY THAT IS EXCELLENT!!  Don't worry too much about the stage etc...after reading so many other posts from sisters who have much more severe grades/stage than ours...they are doing very well and are very wise as they encourage us all to focus on one thing at a time and getting through one hurdle at a time without thinking about the next thing.  It makes good sense to me...and I hope I can remember this when I try to worry too much...