Women under 45 stage II w/node involvement?

Hi Ladies,

Welcome Pavina.  I hope this thread helps you as much as it has helped me.  I didn't know how many emotions I harbored in my body until I started this journey, and I was glad to read about other's because I had felt exactly the same way.  Terrified, angry, exhausted, sad, hopeful, grateful, and relieved...  Hang in there, because it does get better.  And it will make you a stronger person.

Taylor, I'm so glad that you phoned that lady back.  I too have come across some of the nicest, and most compassionate people, followed by the most heartless and unprofessional sorry excuses for human beings through my treatment.

So, I was supposed to start chemo today.  I had my PICC installed yesterday and everything.  Today I had it removed.  Because of my low oncotype dx score, they have decided to give it some more thought.  New pathology, etc., but because it is summer time, everybody is on vacation, and tumor board won't be convening again until September, so it looks like I might be able to enjoy the rest of the summer without having something hanging off my arm.  Definitely good news, but I can't believe the roller coaster.  And of course, now I am waiting again.  Time to do lots of research I guess.  Anybody else have the oncotype test done?

BTW thanks to the ladies who are posting their survival stories.  It is sooooo good to hear! 

Hi everyone,

thank you for encouraging posts... I have read your messages from page 1 and I must say talking to you will be helpful for sure. ;-)..... some amazing women out there....

Hi Madismommy,

I'm just sort of figuring out the Oncotype test.  It applies to women who are stage 1 or 2, who are ER/PR+ and HER2- (which is us).  I guess tumor have hundreds of genes, and oncotype testing looks at 12 of them?  Sorry, I wish I understood better.  Anyway, they look at the specific genes of the tumor, so your surgeon has to send your tissue from the mastectomy to have the test done.  It looks at your specific genes and compares it to other people with tumors with similar genetics to see how effective chemo was for them.  I have a grade 3 tumor, which typically would respond well to chemo, so my doctors were expecting a high oncotype score, but I had a low one, so now they have to try to decide what to do.  They are going to re do the pathology, just to make sure about the grade of the tumor.

Anyway, my doctors were not going to order the oncotype test for me, because of the grade 3 tumor, but my husband insisted.  He is a doctor (ER not cancer), so he has done all the research.  His feeling is that given my low score, I should not have chemo, based upon all the reading he has done.  My onc is still on the fence, and wants to consult with some colleagues first, but she said she would understand if we opted out of chemo.  I told her that I am still on the fence because I don't want to give her the easy out.  I want her to do the research and give me her educated opinion (not that I don't trust my hubby, but I want an expert opinion ;-) 

My head is spinning right now.

Oh, I didn't have a port, I had a PICC, which is a long tube that they insert into a vein in the top of your arm.  You have a little plastic screw type thing hanging off your arm that they use to give you chemo.  It is about 1 inch long, and kind of just dangles there, so not so great when you are wearing short sleeves.

Do you know how long you will be getting chemo?  I'm surprised you have to have the port for 2 years!  My chemo was scheduled to be finished after 6 cycles of 3 weeks, so 18 weeks.  Are you having chemo for 2 years? 

Sachi-  Thank you for sharing your story...I LOVE to hear such wonderful stories such as yours....especially when I"m having one of those days where I let myself go into those 'dark places'....God bless you!  Tori 

I had oncotype done due to high cancer counts on both sides of my family *I'm the first with BC though* My onco score is 38, which means I have a high risk of recurrence. I opted for a BMX even though my cancer was only on the right side w/ 2 +nodes, I also opted for a complete hysterectomy because I am ER+.. my MO and Gyn are totally on board for it.

Taylor...sounds like you could use a {{{hug}}} today!!! Wish it could be real, hang in there! And if you need to cry today than you should. Don't let anyone tell you that you can't still have emotional moments with BC. Unfortunately I think we will constantly run into the people that say ignorant things to us, whether they mean it or not. I recently had the husband of my best friend tell me after I told him how upset I was about finding out I need chemo that "it was my way of EARNING my new free boobs". I've never wanted to hit someone so badly!!!! And, if it helps you at all....I too am having a hard time coming to terms that a month from now I will be totally bald. I think it's been harder on me emotionally than losing both my breasts.



Suz39....maybe because i had a bilateral and the AND is why I only knew about my port option and not a PICC...even though I don't know I would have chosen it if it's outside the body? I had a hard enough time accepting my tiny low profile one...... I only had one side for all 19 nodes but two separate surgeries....the sentinel took three (1 was positive) and than the axillary was 16 (all negative - YAY). and that makes sense why no Oncotype since I was node positive a week after my BMX, even though I was a victim of the false negative during the frozen section at surgery and than a week later told my BC journey just got a lot longer!!

Hi Taylor, I am from Ontario too!  You are not alone.  It is hard being so young with it though. Usually they say that it is a good thing to be young when you get sick - but with BC they are saying that it is worse.  I went to "chemo school" and there was only one other person under the age of 50 there.  I think that we do have the advantage of being able to recover from surgery and probably chemo too, a bit better since we are younger.  At least that is what I am telling myself.

Happy birthday Tammy!  Lots of hugs!  Betty Ford had breast cancer, and lived to be 93 years old.  We can do this! 

Happy Birthday Tammy!!! I used to dread getting older now I can't wait to turn another year older...I just want to be around for a long time, to see my kids grow older...ughhh starting to cry again but I can't I have makeup on and I'm going out!!! I'm going to a bbq I put a dress on and makeup and I even did my hair..lol..I dont know how long I'll have my hair ..I agree with you madismommy I'm going to have a harder time with my hair than my boobs!!! Let me know what you end up getting..you live in Chicago?? My hair is long, dark and thick and I hope I can find a wig like that...just want to look normal...So there is 3 of us from Ontario yay!! Rachel your over a year now since diagnosis..how do you feel?? Fingers and toes crossed for a clear scan!!!

Happy Weekend everyone!!

Tanya xo

Thanks for posting, Snickle.  I needed the encouragement today.  I'm coming to the end of rads and while I'm GLAD to be done with rads, my mind is not transitioning to 'survivor-mode' very well.  I still have Herceptin until the end of February 2012, but I feel...exposed, I guess.

Pejkug3 and Taylor777 - I can so feel what you are enduring right now.  I know that for me, hearing years ago of other women who got thru many years was a godsend.  During treatment, you are a soldier in battle, truly.  When it is over, you can reflect and get on with your life and believe me, it will happen and you will be fine.  Hugs. 

hi guys,

i hope everyone is going well on there respective journeys and kicking some cancer butt!

my fiancee Joanne has just had her 4th chemo (1st taxotere) and has two more to go.  She has had issues with her viens so they are installing her port in 10 days.  i feel so helpless at times as i cant take her pain away.  we are planning our wedding for early March so on her good weeks it gives her things to focus on other then her ilness.  i told her that her reward for finishing her treatment will be our around the world honeymoon in November 2012.  Do you think she will have her energy back by then?  she finished chemo in 2 months, and i have heard herceptin doesnt really zap your energy like chemo does.

God bless you all

Marcus

Hi, all!  

Marcus, I'm still in the middle of it, but I'd think over a year from now, she'll be great to travel.  

RE hair:  Women, I thought I was going to really freak about my hair.  It wasn't that bad.  Honestly.  I mean, yes, it is a constant reminder to everyone else that I'm "sick," and I'm a bit tired of it now that it's been months, but I didn't even cry when we took it off.  I already knew I had cancer, I already confronted that, so the hair wasn't really a big thing to me.  I've got a great wig that I hardly wear honestly.  But you can get a great wig.     It's just temporary.  We'll have the rest of our lives to grow out long, gorgeous hair!!  

Suz,

I'm confused.  Your positive node was rated ITC?  That's smaller than micromet.  A lot of MOs (and tumor boards) here in the US don't count an ITC as a positive node, and a lot of them don't count micromet either.  (Which I think is crazy.  Cancer is cancer.  It's there, or it isn't.)

You have a hard decision.  I'm not sure what I'd do in your situation. 

I can tell you, I had rads to the chest, super clav, axilla, with bolus to the skin and boosts.  It is doable.

Good luck with your decision.

Suz -

 I was thinking about your situation and as a veteran, I would take all available treatment, including the radiation.  You are young and can zap this thing now.  Just an opinion! 

Hi Monica1971,

I think that you and I have a lot in common.  I also just turned 40 (in June), have a 4 and 6 year old, and was totally terrified when I was diagnosed.  My treatment plan has been a bit different than yours.  Like you, my doctor thought the lump I found was nothing, but sent me for testing anyway.  3 months after finding my lump, I was diagnosed with DCIS, and they recommended a mastectomy, which I had in late June.  After my mastectomy, they told me they found invasive cancer, a grade 3 tumor.  I was in total shock, and had some trust issues, given that the mammograms, ultrasounds, MRIs and biopsy didn't show any invasive cancer.  I had done so much research about DCIS, I had no idea how to deal with my new diagnosis of IDC.  I really thought that I was going to die, and started preparing myself emotionally.  Terrified, scared, angry, and stunned.  Lots of emotional breakdowns.  Every day, I came here to the boards, and scoured it for women with the same diagnosis as mine.  I started noticing that they were not dying.  They were going through treatment, and overcoming.

Like you, I felt totally healthy going in to my surgery.  I'm healthy, eat well, and have never had a major heath issue.  I had none of the risk factors, and don't have any cancer in my family.  But now that I have read so many other women's stories, I realize that this is not unusual.  Nobody deserves this, and nobody knows why it happens to us.  I'm really sorry that this is happening to you, and I wish you all the strength and support that you need to make your way through this journey.  Good luck!  Come back often.  It helps a lot!  You won't always feel this bad.  It does get better :-)