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pjm0655 · March 2009

I was recently diagnosed with IDC at the end of January. I had a Lumpectomy on February 23 and

am now getting ready to do Radiation Treatments. This past Wednesday I had an appointment

with a Hormone Treatment Doctor, and she mentioned to me that Kemotherapy was an option

for me since my tumor was over 1 cm (1.3). She said it would bring down my chances of

reoccurance from 10% (if I just had radiation and hormone therapy) to between 5 and 7% with the

Kemo. I'm thinking that I probably won't do it, as a reduction of just 3 to 5% really isn't much,

considering what you go through with the Kemo.

I just wanted to get some opinions about this. Any comments would be very appreciated and

helpful.

pjm0655

Emily2008 · March 2009

Sorry you had to join us here, but this is a great forum to get questions like your answered.

There's something called an Oncotype Test which can help predict your likelihood of cancer recurrence. It's for women who are ER/PR + and Her2-. Ask your onc about it. I'm assuming your nodes were negative?

I know in my case though my oncotype score was on the lower end and my nodes were negative, since I had more than one tumor and my age at dx was 35, 2 different oncologists recommended a short treatment of chemo. It was a tough decision, but based on many things, I opted to do it. It was hard, but survivable.

So, nodes factor in, as well as hormone pos/neg, age at dx, grade of tumor, etc. If you have that info and can post it, it may help us with our responses to you.

pjm0655 · March 2009

Emily2008,

Thank you for your response.

I will ask about the Oncotype Test to my onc. Thank you.

Yes. My nodes were negative, so that was a positive thing for me.

I only had one tumor that was 1.3 cm, which is relatively small. I think

the grade that I have is an N-0, which is also good. I am also Hormone

Receptor Positive, so I know I will be put on some medication after my

Radiation Treatment. I am a little older than you, 53, but considering

everything in all, I feel pretty lucky. I've talked to some people, and they

all have said that I really don't need to do the Kemo, and I'm pretty much

leaning that way, myself.

I'd appreciate any input from anyone, and Thank you again Emily2008 for

your reply. It's much appreciated,

pjm0655

AccidentalTourist · March 2009

Hi PJM, it seems that different oncologist advise different things. I had 1.8 IDC and Grade 2 and was told that post surgery there will be no chemo, only 20 rads treatment plus 5 years of Tamoxifene. From what I hear on this site a lot of women with similar diagnosis to mine would have had chemo. I have no idea whether my oncolgist was reckless or the ones who suggest chamo are too cautious. Who knows, I can only hope that what was suggested was what was needed. Good luck with everything.

Dx 5/23/2008, IDC, 2cm, Stage I, Grade 2, 0/6 nodes, ER+/PR+, HER2-

pjm0655 · March 2009

Hello Accidental Tourist,

Thank you for your reply. I will absolutely keep everything you said in mind.

I am trying to talk to as many people as I can, but I know it's ultimately my

decision.

You take care, and I hope everything goes well with you,

pjm0655

LisaF · March 2009

Hi pjm,

I also had chemo, but my tumor was 2.3 cm. My nodes were also negative, thank goodness!

I would also recommend the Oncotype test. Good luck!!

Jamie6 · March 2009

pjm,

I'm waiting for my oncotype test to come back - it should be back late next week, and am praying it will be low score. I will take the test result to my oncologist(s) and ask for their opinions. I already have 2 different oncologists booked for appointments to get multiple opinions. My first oncologist sounded like she wanted me to get chemo (even before the oncotype test was ordered), because of my age (42) as well as my tumor being over 1cm (at 1.3cm). This is why I ordered the oncotype test to see if she will have a different opinion based on the score.

I wish you the best of luck. I think y ou're doing the right thing by posting and gathering as much information as possible from people in here.

dalycity · March 2009

pjm: My tumor was 1.2 cm, Stage 1C, Grade 2; diagnosed post-menopausal. Had 2 opinions--both said no chemo. I asked about Oncotype and my breast surgeon said not necessary because I am low-risked and I was not in the gray area. He said if I were younger, I guess pre-menopausal, he may suggest chemo. Hope this helps you a little.

Jamie6: Good luck on your Oncotype. It's good you have Grade 1 and Stage 1.

pjm0655 · March 2009

LisaF,

Thank you for your reply. I think I've made a decision to not have the Chemo and

Hormone Therapy, since my tumor was only 1.3 cm and was not in my nodes.

Chemo takes so much out of you, and it would only lower my chances about 3 to

5 % more of it coming back. I am going to my doctor on Wednesday, and will ask

him about the Oncotype Test though.

Thank you again for your message, and Good Luck to you,

pjm0655

pjm0655 · March 2009

Jamie6

Yes. I agree. I'm glad I found this website. It has helped me very much.

I think I might have had the Oncotype Test done, come to think of it !

This is so confusing !! But I will still ask my Doctor about it. Is the score

reading like an N-0? I know that my Surgeon told me about this, but I'm

not sure that this is it?

Thank you for any advice you can give,

pjm0655

idaho · March 2009

I think N-O means lymph node negative. The grade of the tumor should be a 1, 2, or 3. Let us know how things turn out. soft hugs- Tami

pjm0655 · March 2009

dalycity,

Thank you for your reply. This helps me a lot. I have also been told

by three doctors that I wouldn't need Chemo. The tumor also was close

to the surface, but I still think I will get the Oncotype Test done.

Good luck to you in the future,

pjm0655

pjm0655 · March 2009

idaho,

Thank you so much for the information. Now that you said that, it's all coming

back to me now. Senior moment, I guess !! There's so much to learn, but I'm

taking it one step at a time. That's all you can do.

Thanks again, and Good Luck to you.

pjm0655

pjm0655 · March 2009

Update -

I am now putting my Radiation Treatments on hold, as I am getting the

Oncotype Test done, to find out if I'm a high risk of it returning. If so, then

I guess I'll be doing the Chemo. Dang !!! I sure hope it's a low score.

My onc's nurse has ordered the test, so now I just wait for the results

(about 10 days to 2 weeks, I'm told) then make an appointment with

my onc to find out. Boy, this is getting drawn out !!! My Radiation Treatments

that were to start on Wednesday have been put on hold for now, until this

test comes back. I really don't like this waiting, but what can you do??

What chance is there of it coming back within this waiting period??? I'm

thinking not much, but it still concerns me. Like everyone else, I'm waiting

again !! I just want to get the ball rolling. I'm sure you all know what I'm going through.

Just wanted to update everyone, so I'll keep you all posted,

Thanks for everyone's support !!

pjm0655

marshall2000 · March 2009

Ihave a question. I was dx in january,large tumor er4+ pr4+ her2- gade 3 with positive lymph node. i have not had any surgery, started chemo 3/12/09. plan is shrink and then lumpectomy. my doctor has not done an oncotype test. My question is this. will my oncotype score help me in my decision to have mastectomy vs lumpectomy. if it is high that would mean higher chance of recurence,correct? or os the oncotype test just a percentage to help with the decision of taking chemo? Thanks in advance for any info you can share. Oh yeah, i hope you all are enjoying beautiful weather and have a wonderful day. (tomorrow since i am posting so late). michelle

thegoodfight · March 2009

The oncotype dx test is to determine if chemo would greatly change your risk of recurrance. It is determined by sending off a piece of the tumor which is surgically removed and then it is sliced and diced to determine your personal dna risk factor.

Hope this helps...........................Caren

marshall2000 · March 2009

Caren, Thank You, I have already started chemo in hopes of shrinking the tumor enouogh to have a breast conserving lumpectomy. I am trying to decide if i should just have bilat mast and was wondering if the oncotype score would influence my opinion. thanks again

GramE · March 2009

I was IDC, er/pr negative, Her2 +++. 4 rounds of dose dense A/C, every 2 weeks, then 12 rounds of Paclitaxel and herceptin (herceptin for her2 +) and my tumor began to shrink after the second chemo. Before I was done, it could not be felt at all. MRI, Mammo and Ultrasound before surgery showed NOTHING. Lumpectomy was in December and clear Lymph nodes. Because of Her2 +, I get Herceptin every 3 weeks for a year.

Good Luck. Blood work was done each time I had chemo and I had Neulasta shots after each of the A/C only. Do you know the type of chemo you are getting? Drink, drink drink LOTS of water to help flush the chemo thru your system. Report any nasty side effects immediately, like nausea, bowels, pain. Keep communicating with our oncologist.

The good part is there is an end to the chemo. However, the questions and worries don't have an end. HUGS, Nancy

marshall2000 · March 2009

that is exactly my chemo regimen except for the herceptin as i was HER2-, i hope i have the same results. thank you nancy, appreciate it.

GramE · March 2009

You are very welcome. I also had some Mylanta for nausea, Immodium for diarhea (which was the second day after treatment), biotin mouthwash and toothpaste to prevent mouth sores, chap stick for dry lips and Eucerin lotion for dry skin. In a way, I felt like a drug store outlet, but it is "doable" and you do NOT have to like it.

Check out the hair threads, as when you start to lose it, it is a bit traumatic. I am almost 5 months since my last chemo and have enough hair that it stands on end if I dont plaster it down with some gel. Scarves were too slippery, baseball hats, beanies and turbans worked best for me. I also have 2 wigs, one fun one and one more like my old hair. Since I am old (63), retired and do not have to go out to work, I rarely wear the wigs. Casual is my style.

HUGS, Nancy

sydpen2 · March 2009

I felt like I was reading about myself. I was in the same place you are in. Choice was mine to do chemo with the same benefits of %'s. I had 36 radiation treatments and decided not to do the chemo. In hind site now I wish I had of. I know that I can't go back. Now I am Stage IV mets to liver and bone. Now, that doesn't mean that you would end up the same by any means! We are all obviously different. But I personally wish I had done everything I could have now when I had the opportunity. You just have to go with your gut feeling. Whatever you decide we are all behind you and here if you need us!!

Best!

Anonymous · March 2009

Sydpen2- your post really speaks to me. wow. I am so shocked that you have mets with no node involvement, but I know that can happen. From what I have read, mets can be controlled and you can still have no evidence of disease with chemo, etc. I hope you are doing well, and your spirit is good.

pjm0655 - it's good that you did the oncotype test. I did that and found my score to be in the high intermediate, so am doing chemo. It was just another way to analyze this awful disease, but I am really happy I am doing chemo, and had that additional info.

In a way I think it is terrible that the doctors give us the choice. I also had a choice, although as I am 44 my oncologist recommended chemo or tailor x which would randomize chemo. However, she also said it was up to me and with an intermediate score I could still chose no chemo. How are we supposed to make that kind of decision without the years of training etc....

pmj0655 - keep us posted on your score and your decision.

Stay strong everyone!

Snappygoddess · March 2009

Hi everyone!

I had the AC and will do round 7 of Taxol on Friday. Had a lumpectomy in Oct'08 with clean margins and no lymphnode involvement and started chemo in Dec. Even though the doctors told me that I was 'technically cancer clean' I still chose to have the chemo with radiation to follow because I am triple negative on receptors and a very high risk for the cancer to return.

It hasn't been as bad as I had anticipated but the Taxol chemo has been a lot rougher on me as far as aches and pains then I would have thought. Still... it has been 'doable' and my last round will be May 3rd(6 days before my 54th birthday) and then 33 rounds of radiation(still not sure if I am going to opt for that). I am still trying to maintain a positive attitude(which is hard to do after the cummaltive effects of chemo) and that's all I can do.

I wish you the best of luck pjm in your treatment, whatever you decide it is... and my prayers and positive thoughts go out to all of you ladies HUGS

~Belinda~

pjm0655 · March 2009

Hello Everyone,

It's been a while since I last updated everyone. I received my OncoDX Test Score

yesterday, and good news. The score is a 16, which is in the low catagory, so I

won't be needing Chemo. Hurrah !! I am now planning my Radiation Treatment

appointments and after that will be going on Hormone Treatment Medication. I

wanted to thank everyone for all your support and encouragement. You will all

be in my thoughts and prayers, and I will be back from time to time to give

updates too !

Thank you,

pjm0655

Patti

Nichola · March 2009

Hi Patti

You say you were Stage 0 which for me indicates pre-cancer ie. DCIS not IDC as you've stated? (A 1.3cm "tumour" would be stage 1). You also don't mention a grade...?

I have only just come accross this thread and am very interested in this chemo or no chemo question...

Here in the UK I was told that as my first BC was multifocal stage 1., grade 1, - chemo would not work for me as it only works on the more aggressive cancers ie. grade 2 or 3s. This was the case even after my recurrence even though I still have a very high risk of mets now?! My treatment to date has been only mastectomies, rads and tamox...

Would love to know anyones thoughts on this....?

Nikki

pjm0655 · April 2009

Nichola,

Opps ! Sorry. I am Stage 1 and Grade 1 as my tumor was 1.3 cm

I'm still learning all this terminology. Hope this clarifies everything,

Thanks ,

pjm0655

Patti

pjm0655 · April 2009

Hey Everyone,

Just did my first Radiation Treatment today. It went well as expected. I'm not

sure if anyone know this, but when will I see any kind of a sunburn? I have

some Aloe Vera Gel / 100 % Pure, so I'm hoping this helps. Any other

suggestions on what else to use?

Thanks a lot, you guys are super !!

pjm0655

Patti

pjm0655 · April 2009

Emily,

I just wanted to thank you for letting me know about the Oncotype DX Test.

My score came back low, at a 16, and I'm now doing my Radiation Treatments.

That test has really given me a lot of peace of mind.

I hope you are doing well, and that goes for everyone here !

pjm0655

Patti

Dixieland · April 2009

I was just diagnosed on April 2 with ductile carcinomas in two places in the same breast and the surgeon assures me that a mastectomy is the only solution. I have opted for reconstruction at the same time, but both surgeons want to wait six weeks to operate, which seems like a long time. An MRI was not suggested for the other breast and after reading several posts, it seems that a lot of docs run the MRI to be sure there is nothing in the other breast. I would welcome any comments from anyone about either or both of these topics based on your own experiences. I should add that the tumors are small, about 2Cm. I have no other test results available to me for sharing, but will do so when I get them. Thank you and God Bless.

idaho · April 2009

Call your doc and demand a MRI. It is worth it to know. If you have a problem in the other breast you can take care of it at the same time you do the first one. Just my opinion, but I am glad I knew that my other breast was cancer free, helped with the decision I made. Tami

aja1967 · April 2009

Dixieland,

Our cases are very similar. I was diagnosed on April 2 with IDC Stage IIa in two places in left breast (2.3 cm and 1.9 cm.) and will be undergoing a mastectomy which has yet to be scheduled while complete all tests including genetic testing for BRCA gene mutation. Had MRI (left breast) and bone scan today as well as genetic counseling and blood work. Not sure why MRI of breast with cancer was ordered but had mammo and ultrasound of right breast and looks clean. Sentinel node surgery scheduled for Wed., 4/15. Have you been sent for the genetic testing? If not, I recommend you discuss doing so with your doctor. The result will determine whether there is a good chance of developing cancer in right breast and whether I get a single mastectomy or bilateral and takes 2-3 weeks to come back. I am going to do reconstruction at time of surgery. In the meantime, I 'm nervous every second that the tumors are growing and the cancer is spreading while I wait for all the data to be gathered to determine the best course of treatment. I was told chemo. is a definite after surgery which I am scared to face but finding comfort in posts that say chemo is manageable and not as bad as it used to be. However, dreading hair loss! I am 42 and have 2 girls, ages 7 and 6.

Amy

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