Anyone with Stage 1, Grade 3 IDC?

Muffins123

Toronto Joined: Apr 2014 Posts: 1

Muffins123 wrote:

Hello All,

My mom who is 60 yrs old was just diagnosed with IDC, Stage 1, Grade 3 breast cancer.  I've been worried sick about her.  She did a lumpectomy and they removed 8 lymph nodes and they said they were negative and she had clear margins.  Hospital also said she is ER+ and PR+,  I'm worried because they said "grade 3" means aggressive, fast growing.  Right now we have an appointment to find out the results of a Oncotype DX test to find out the likelyhood of it coming back.  Just wondering on prognosis for Stage 1, Grade 3.

Thanks 

boobieprized

Sounds very much like my diagnosis, except I am 40.  Still waiting on my oncotype test, too.  Low oncotype wishes for your mom!

MJHJAN1014

I fit this category. My prognosis is excellent. Your Mom will be fine. My Oncotype score was 29, and my oncologist

recommended 4 rounds of chemotherapy(Taxotere and Cytoxan). I call it my life insurance. She'll have radiation also. I was very fortunate to have qualified for internal radiation, which is quite abbreviated. When I asked my oncologist yesterday about risk of cancer returning(metastases to other organs) being higher in overweight women due to estrogen being stored in fat, he responded that, yes, there is a higher rate of recurrence. But then he said to me, " the reason we're beating you up a bit here(with chemo) is so that you will never have to deal with breast cancer again!" XOXO

HollyHope

Yep - this is me and I have at 51 Oncotype score.

hikingandhorses

I just had my stitches out yesterday from a lumpectomy.  I'm lucky that my margins were clear and my one node was negative.  I'm scheduled to meet with an oncologist early June.  My surgeon says I may not have to have chemo but considers me in a grey area b/c my tumor is 8mm (the DCIS next to it was 2.5 cm).  I'm 49 - I own my own small business and, if I'm not working, I don't have an income.  I also am a single parent with a teenager at home.  To my benefit, I'm in great shape and I have small breasts.  Was told that I would definitely have radiation....the question is the chemo.  I have been scouring the internet looking for suggestions and answers.  Found two research articles about the benefits of treating people with chemo in the grey area (IDC 5mm-1 cm).  The thought of going through chemo scares me....the thought of this process having to be repeated later in my life does too!  Anyone out there in a similar situation?  

HomeMom

maybe because you are PR neg and HER2 pos you are better off doing the chemo

hikingandhorses

Met with the oncologist yesterday and after hashing through the details, we decided to move forward with 18 weeks of TCH wrapping up the year with Herceptin.  The three deciding factors in my case:  The size (greater than 5mm), the grade and positivity of the HER2, and my age (49).  Wish me luck!

Erinsoule

I am newly diagnosed with IDC with DCIS present, I don't even know stage yet as I haven't had my surgery yet, it is tentatively set for June 30th and doing a lumpectomy. This course was changed from an original decision of a double mastectomy. My oncologist said I am most likely stage 1, and have a 14 mm tumor with an additional area that looked like a string of pearls (atypical though). He said that with early stage and smaller sized tumor that a lumpectomy is just as effective as a double mastectomy, but Im so confused now  Can I request chemo and radiation I wonder? Just to be on the safe side? 

Annette47

Radiation is pretty standard with any lumpectomy, so I doubt you would have to request it, although if they haven't mentioned it you can certainly ask.   Chemo would most likely be dependent on the final pathology, including an oncotype test if the IDC is large enough (mine wasn't).   

The real danger from breast cancer comes from cancer that has already left the breast, and the type of surgery doesn't really affect that - either it has or it hasn't, which is why the survival rates are similar.   Lumpectomy has a higher chance of recurrence (which is why radiation is given) but since once you have had cancer, close surveillance is done, those recurrences are usually caught early enough to be successfully treated, again, leaving similar mortality rates for both types of surgery.   

Chemo is given to address the possibility that some cancer cells may have escaped, but because it comes with it's own risks of very serious side effects, tests and calculations are done to assess how likely it is that the cancer cells have begun to spread and whether that risk is high enough to justify the risks of the chemo.    In many cases of cancer that is either caught extremely early or is relatively non-aggressive or both, the risks of the chemo are thought to be greater than the risk of stray cancer cells, so it is not recommended.    If your cancer is estrogen positive, Tamoxifen (or an AI if you are post-menopausal) can often provide many of the same benefits as chemo but with fewer serious side effects.

hikingandhorses

Annette47 is right on based on what I've learned about my tumor.  The first consideration is the tumor size and lymph node involvement.  Second consideration are the markers on the tumor and the scoring.  ER (estrogen), PR (progesterone) HER2 and Ki-67.  They don't do an oncotype on HER2 positive tumors.  

If the non-DCIS part of the tumor is less than 5mm, they probably won't do chemo except for tamoxifen if ER+ (node negative too)

If the non-DCIS part of the tumor is 5mm-10mm, they will consider chemo.  They will strongly encourage chemo if HER2 + and/or Ki-67 over 20% or node positive because the likelihood of systemic involvement is high (the rogue cancer cells that escaped).

Chemo for non-DCIS tumor over 10mm.

Radiation is standard practice for lumpectomies.  Sorry to hear you inquire about this but welcome to the boat!  

Erinsoule

Annette, thank you so much that was very helpful information! Better than even my Oncologist!

Erinsoule

Thanks hiking! My surgery is scheduled for June 30th. Lumpectomy with sentinel node mapping and lymphnode diisection? something like that? Radiation to start around 4 weeks after surgery. My HER2 came back negative, my tumor (non dcis one) is about 14mm (maybe a little larger than that), the dcis part is like a string of pearls they said, so not sure what that means exactly, but its there anywhere haha.

hikingandhorses

Erinsoule - don't be surprised when your oncologist wants to start you on chemo after reading your post surgery biopsies.  If you start chemo, then your radiation will likely be put off until your chemo round is done.  The diagnosis you have is just on your biopsy - it can change once they test the tumor and lymphs.  Good luck!  I had my first round of chemo yesterday (posted in June 2014 chemo starters).

Erinsoule

Hikingandhorses...thanks! or should I say no thanks?? LOL! Actually, as much as I dread the thought of chemo...I actualy want it, how crazy am I? Only because Im so worried that the lumpectomy is not going to keep this beast from returning, Im just so worried about that! I want whatever they can give me if its a safety net of sorts. Thank you for your honesty and advice, it is SOOOO appreciated...as Dr's are evading all questions it feels like.

KDLodge

Be sure you ask your Oncologist about getting the Oncotype DX test if you are Hormone positive but HER negative. It will give you a much better idea about how much chemo would really benefit you. It might not be necessary if you fall in the low category.  We are all scared but be sure and use all the medical test and Doctor's knowledge before you make your decisions. Good Luck

Meow13

Yes I had grade 3, but it was from the tubular formation poorly differentiated. My Oncodx was 34. I didn't do the chemo. So far so good 2.5 years hasn't returned. I did anastrozole for 1 year now exemestane. I hate the side effects but I will live with them if cancer doesn't return. My Nottingham scores were a 5 and 6, I had 2 separate 1cm tumors multicentric. Good Luck

hikingandhorses

Erinsoule....how did you do??  Take your meds....stay out of pain so your body can heal.  Wishing the best for you - 

BEJ

I was diagnosed with grade 3 IDC, 8 mm in the same mass with ILC of 5mm. At the biopsy I was told that primary cancer was 40% estrogen positive but when the pathology report came in from my lumpectomy the diagnosis was changed to triple negative. The doc ordered oncotype testing but apparently the sample was too small to test. Scary to have grade w/3 triple negative. Emotionally, it has been a real roller coaster ride. Now the pathologist confirms that I do have estrogen receptivity it the ductal mass, as well as in lobular. 

I was hoping to avoid chemo but that is not the recommendation. My daughter has taken this as well as she can because she has a non-medical perspective. I wish that the supplements had boosted my immune system enough to make this all disappear but it didn't go that way for me. I begin chemo soon and will hold off on radiation for a short time until my grandchildren (she's having twins!) arrive. It's so hard because this is a time of my life that should & will  be celebrated but with the BC cloud hanging overhead. My new plan is to get through treatment and live happily for a long, long time spoiling those babies.

bluepearl

I was grade 3, 8mm, ERPR+ Her2-. node negative, age 63.....stage one.......recommended no chemo...had mastectomy (second time around), no LVI.....always sort of bothered me but all water under the bridge now....take my anti-hormonal faithfully!!!

jetgal23

I just got my oncotype score last week - 21 - though I was surprised that I was upgraded to a Grade 3 (from grade 2).  Now I'm having the Mammaprint test done to get more info before deciding on chemo.  So I'm gathering as much info as I can.  I'm 52 and peri-menopausal so its still confusing as to what will happen next.  Had surgery (lumpectomy) June 12 but looks like I won't have any treatment until August.  I hope that's not too long to wait...

bluepearl

Jetgal23....8 weeks is stretching it.

JWoo

Hi all- thought I would join in since I fit. 

Muffins123, how is your mother?

Just had my check up, so far so good. Hoping it stays that way. 

How are all the rest of you doing? 

What tests do you have done when you go in for checkups?

Oh dear- it is almost 3am- time for sleep. Good night all!

Hope50

I am stage 1 grade 3 and fall in the middle on the oncotype test.  Had lumpectomy middle of July.  Trying to determine chemo.  I'm scared either way I go.

edwards750

Of course you are. Normal. What does your doctor advise? I bet chemo is on the table because of the grade of your tumor. It is more aggressive. You are early stage and that's good. There are lots of women who had chemo- there is a thread dedicated to chemo on this forum. Check it out. Good luck! 

Diane 

Jojobren

I had a double mastectomy with reconstruction May 23, 2014. I did get a really bad infection June 2014 and had to have the right expander bar removed.  My Oncotype score was 19, and my oncologist recommended 5 years of exemestane (aromasin). Other than the side effects of that, I'm doing fine and have a 9 to 10% chance if the breast cancer returning after 5 years on this drug. No radiation or chemotherapy required...thank God.  I am waiting now to hear when I will be having the right expander bar put back in. It should be within the next couple of weeks. Good luck to your Mom..she should be fine. 

SandyLovesLucy

Hope50, I'm stage 1, grade 3 but also HER2 positive and chemo is a definite for me.  It was really scary at first but now that I have a plan and learned as much as I can about my upcoming treatment I feel better.  Good luck working with your medical team to develop the plan that is right for you.  I'm sending hugs and wishing you the best!

Sandy

jetgal23

Hope50 and SanyLovesLucy - 

I finally got my Mammaprint score which puts me at high risk (my oncotype was 21).  So I'm having chemo starting Wednesday.  To recap, my lumpectomy was June 12, stage 1, grade 3, 7 nodes but all negative, ER/PR +, and HER2-.  Tumor was 1.6 cm.  Not happy about chemo but the prognosis is very good for me, so I'll bear it.  I'm self employed and do some consulting work and also work as a potter and sell at craft shows.  Not sure I will have the strength for some of the remaining shows in September and October.  I'm not going to try for holiday shows either because radiation will likely start in late October or early November and so I've heard it gets harder towards the end.  Fortunately I sell online and can do a lot of work at home...so this may the year that I do all of my work at home.  So hard to plan, but will read more on how others have fared with the same treatment (Taxofere and Cytaxin, may have spelled wrong) and will report how I do later this week.  Hang in there everyone!!

SandyLovesLucy

Hi Jetgal23.  Good luck as you start chemo.  May it all go smoothly with minimal side effects. I'm hoping to be right behind you and will be starting rads later, too. I am also self-employed.  That is good for the flexibility for which I'm grateful.  BUT, no work, no pay!  I was driving myself crazy trying to figure out how I'm going to do it but finally decided to lighten up and accept that it will all work out.  Hope you will consider posting some pix of you work.  I'm speaking as a pottery class drop-out! 

hugs,

Sandy

lisa2012

I was stage 1, grade 3 k167 40, oncotype 38, AND BRCA 1 pos. so I had chemo. Had a double mast because of the gene problem. I'm 2.5 years out from diagnosis. Doing Ok so far though the anti hormonal meds have made stiff and achey(all of them.)

Hope50

Thanks for the info and always the encouragement.  I meet with MO tomorrow to determine treatment. I'm scared. I was told 7 weeks radiation and hormone pill. It's the chemo that is unknown at the moment. I already have a very sensitive stomach.  I want to do whatever needs done so I can live a great fulfilling life.

uds17

Hi Hope50.

I rememeber what it was like before the decisions were made and, honestly, it's the hardest time.

I was IDC stage 1 (1.2cm), grade 3, ki-67 unfavorable, ER/PR positive, low oncotype. I also had a separate DCIS tumor (1.2cm, stage 2). Because of my age (47), the tumor grade, the multifocal tumors, and the fact that they weren't detected on mammogram or ultrasound (I had very dense breasts), we (my husband, oncologist, and I) decided to do chemo. For me, what it boiled down to is that if I have problems in the future, I want to be able to say to my kids that I did everything possible. Once I had a game plan I felt much better. Chemo sucks, for sure, but it was manageable. 

These decisions are very personal and no two people/cases of breast cancer are the same. Do whatever feels right to you (obviously with the guidance of your doctor). I wish you luck and strength. Feel free to message me if you'd like to chat.

xoxo