Dx with IDC stage 1. Lumpectomy and sentinel lymph node surgery

irisheyes14

Hello all.  Just reading through the various posts and find it very comforting to read all the positive comments on here.  After having a routine mammo,  I was dx with stage 1 IDC early October and am due to have a lumpectomy/sentinel lymph node surgery on Thursday this week. While I feel extremely lucky that it has been found at the early stage and is apparently slow growing (10 mm approx), I am still scared of the outcome and really have no idea what to expect/questions to ask etc.  I will need radiation treatment and 5 year hormone therepy as I am premenopausal.  Any advice would be greatly appreciated.

Puffin2014

welcome to the site

I had the same diagnosis, stage 1 IDC. Had my lumpectomy and 2 sentinel nodes removed in Jun 2014, and know what a scary time this is for you. It feels like everything is happening so fast. Try not to look too far ahead or it gets overwhelming. Take someone with you for your appointments, both for moral support and also another set of ears. It's hard to focus on what Dr is saying and they cover so much so fast. Ask Dr if it's OK to record your appointment so you can listen again at home. All my doctors were OK with me using the record on my ipod/phone. I'd have it all set up, and when they knocked on the door to come in I'd hit record and set it on the desk.

Knowledge is power, but be careful about jumping all over the internet, a lot of incorrect and scary stuff out there. Another website that my onc recommended was breastcancer.org and I have found it extremely helpful. Besides having excellent educational articles, their discussion forums are subdivided, so you can follow forums specifically for those who have had mastectomies, chemo, radiation, etc. I started with the lumpectomy forum, then moved to the chemo forum, then the radiation forum, and now am active on the Arimidex forum. Be sure and mark any forum you like as a favorite so it's easy to find again and easy to see when new responses have been added.

Your tumor is small, so was mine, but that doesn't guarantee that it's slow growing. Ask your surgeon if they're going to do the oncotype test if there's enough tissue to test. It tests how aggressive the tumor is which helps dr decide if chemo would be useful. It's scored 0-100, score of 10 or less means it's not aggressive and chemo not indicated, score of 30 and above is aggressive and chemo recommended, scores in the middle you need to decide what to do. My tumor was 10 mm, my oncotype score was 27 and I did chemo, not fun but doable. I had my radiation after my chemo.

Since surgery is scheduled for Thursday, focus on that for now. Find, or make, a pillow about 3" by 6". The incision for the sentinel lymph node biopsy can be very tender and it helps to have a little cushion under your armpit, also nice to cushion for the seat belt in the car. I didn't need much pain medicine after surgery, over the counter meds like tylenol were enough. Do you live alone, or will you have help after surgery? Motion is limited with that arm for awhile, if you can prepare a few meals ahead of time to freeze for microwaving later, that helps, and do whatever housecleaning that's needed before the surgery. Do what you can to stay healthy over the next few days - stay away from people with colds, get your sleep, stay active and walk, etc. I found it more comfortable to sleep in my recliner for a couple days after surgery.

As for the radiation, ask if you qualify for the 3 week Canadian model of treatment, where you get a little bigger dose each treatment but go every weekday for 3 weeks instead of 5 or 6 weeks. If your tumor is on your left breast, ask if they'll be doing any special techniques to protect your heart and lung on that side. If you don't need chemo, they'll wait a few weeks after you've healed from your surgery before starting the radiation.

As for the 5 years on that pill, most doctors wait until after radiation to start that, so deal with that later.

There's a great bunch of ladies on this forum and I'm sure you'll be hearing from others as well, let us know how you're doing.

irisheyes14

Puffin2014 said:

welcome to the site

I had the same diagnosis, stage 1 IDC. Had my lumpectomy and 2 sentinel nodes removed in Jun 2014, and know what a scary time this is for you. It feels like everything is happening so fast. Try not to look too far ahead or it gets overwhelming. Take someone with you for your appointments, both for moral support and also another set of ears. It's hard to focus on what Dr is saying and they cover so much so fast. Ask Dr if it's OK to record your appointment so you can listen again at home. All my doctors were OK with me using the record on my ipod/phone. I'd have it all set up, and when they knocked on the door to come in I'd hit record and set it on the desk.

Knowledge is power, but be careful about jumping all over the internet, a lot of incorrect and scary stuff out there. Another website that my onc recommended was breastcancer.org and I have found it extremely helpful. Besides having excellent educational articles, their discussion forums are subdivided, so you can follow forums specifically for those who have had mastectomies, chemo, radiation, etc. I started with the lumpectomy forum, then moved to the chemo forum, then the radiation forum, and now am active on the Arimidex forum. Be sure and mark any forum you like as a favorite so it's easy to find again and easy to see when new responses have been added.

Your tumor is small, so was mine, but that doesn't guarantee that it's slow growing. Ask your surgeon if they're going to do the oncotype test if there's enough tissue to test. It tests how aggressive the tumor is which helps dr decide if chemo would be useful. It's scored 0-100, score of 10 or less means it's not aggressive and chemo not indicated, score of 30 and above is aggressive and chemo recommended, scores in the middle you need to decide what to do. My tumor was 10 mm, my oncotype score was 27 and I did chemo, not fun but doable. I had my radiation after my chemo.

Since surgery is scheduled for Thursday, focus on that for now. Find, or make, a pillow about 3" by 6". The incision for the sentinel lymph node biopsy can be very tender and it helps to have a little cushion under your armpit, also nice to cushion for the seat belt in the car. I didn't need much pain medicine after surgery, over the counter meds like tylenol were enough. Do you live alone, or will you have help after surgery? Motion is limited with that arm for awhile, if you can prepare a few meals ahead of time to freeze for microwaving later, that helps, and do whatever housecleaning that's needed before the surgery. Do what you can to stay healthy over the next few days - stay away from people with colds, get your sleep, stay active and walk, etc. I found it more comfortable to sleep in my recliner for a couple days after surgery.

As for the radiation, ask if you qualify for the 3 week Canadian model of treatment, where you get a little bigger dose each treatment but go every weekday for 3 weeks instead of 5 or 6 weeks. If your tumor is on your left breast, ask if they'll be doing any special techniques to protect your heart and lung on that side. If you don't need chemo, they'll wait a few weeks after you've healed from your surgery before starting the radiation.

As for the 5 years on that pill, most doctors wait until after radiation to start that, so deal with that later.

There's a great bunch of ladies on this forum and I'm sure you'll be hearing from others as well, let us know how you're doing.

Thank you so much for this

Thank you so much for this valuable information.   The mini pillow and recording information will be added to my list.  From the biopsy, the Dr did say tumor was slow growing and chemo was unlikely but nothing is definite until my surgery is done so fingers crossed.  Thankfully I have family support at home and feel so sorry for any women who have to go through bc alone.  Thank you once again.

Lydia1234

Welcome!

I was diagnosed with DCIS stage 0 in September 2015 and had a lumpectomy and sentinel node biopsy a couple weeks ago.  I am doing great and healing well. I was very fortunate that my margins were clear and no cancer in the lymph nodes.  It is all new and scares the crap out of you.  So much to learn and think about.  It is very hard to not worry but try to stay busy.  I am so glad that I had my mammogram and mine was caught early.  I will be having radiation soon and then since I am post menopause I will be taking a drug for 5 years.  Mine was estrogen and progesterone positive.  Puffin gives good advice.  I found an ice pack on the area felt good to me after surgery. Hang in there! 

sbmly53

My Dx was similar to yours

it is a very scary time. Puffin gave great advice. I can only add that you keep a notebook for your questions and concerns to ask your providers. Also, my surgeon ordered a "happy pill" for me prior to surgery which included a wire guided mammo.

I had an Onco score that let me opt out of chemo. I had 33 radiation treatments and just completed 5 years of Arimidex and Aromasin. I am 6 years out from my dx and I am dancing with NED ( no evidence of disease). 

Let us know how you are when you can. 

 

Hugs,

 

sue

irisheyes14

sbmly53 said:

My Dx was similar to yours

it is a very scary time. Puffin gave great advice. I can only add that you keep a notebook for your questions and concerns to ask your providers. Also, my surgeon ordered a "happy pill" for me prior to surgery which included a wire guided mammo.

I had an Onco score that let me opt out of chemo. I had 33 radiation treatments and just completed 5 years of Arimidex and Aromasin. I am 6 years out from my dx and I am dancing with NED ( no evidence of disease). 

Let us know how you are when you can. 

 

Hugs,

 

sue

Thank you Sue.  Lovely to

Thank you Sue.  Lovely to hear positive outcomes. Will let you know how it went.

irisheyes14

Lydia1234 said:

Welcome!

I was diagnosed with DCIS stage 0 in September 2015 and had a lumpectomy and sentinel node biopsy a couple weeks ago.  I am doing great and healing well. I was very fortunate that my margins were clear and no cancer in the lymph nodes.  It is all new and scares the crap out of you.  So much to learn and think about.  It is very hard to not worry but try to stay busy.  I am so glad that I had my mammogram and mine was caught early.  I will be having radiation soon and then since I am post menopause I will be taking a drug for 5 years.  Mine was estrogen and progesterone positive.  Puffin gives good advice.  I found an ice pack on the area felt good to me after surgery. Hang in there! 

Thanks Lydia.  All the good

Thanks Lydia.  All the good advice will help me a lot and you're right, staying busy has kept me sane during the past couple of weeks. Hoping for same results as you.  

donnamarie68

just went through the same thing

I was dx with stage 1 breast cancer in july, had my lumpectomy in  Aug.Had to wait almost 6 weeks for radiation it took that long for fluid to be absorbed back into my body around the lumpectomy.Radiation was then a one week, twice a day, 6hr. apart treatment course were tubes where inserted through another incision and then 4 days later  I was put in a MRI machine to make sure tubes hadnt moved. The MRI was run on me every day twice a day before treatments. On day 5 they took out tubes and it was all over. I had a great team but did not know what to expect because was told everyone is different. The biopsy was the most painful for me but others say it wasnt so bad. Read all you can, dont be afaid to tell them if it hurts, no question is stupid its your body ask anything you want to. Because of the type of radiation I could not bath or shower for a month. That was a long month lol. I had lots of baby wipes and the sink to clean up in. God Bless and Good Luck

aisling8

donnamarie68 said:

just went through the same thing

I was dx with stage 1 breast cancer in july, had my lumpectomy in  Aug.Had to wait almost 6 weeks for radiation it took that long for fluid to be absorbed back into my body around the lumpectomy.Radiation was then a one week, twice a day, 6hr. apart treatment course were tubes where inserted through another incision and then 4 days later  I was put in a MRI machine to make sure tubes hadnt moved. The MRI was run on me every day twice a day before treatments. On day 5 they took out tubes and it was all over. I had a great team but did not know what to expect because was told everyone is different. The biopsy was the most painful for me but others say it wasnt so bad. Read all you can, dont be afaid to tell them if it hurts, no question is stupid its your body ask anything you want to. Because of the type of radiation I could not bath or shower for a month. That was a long month lol. I had lots of baby wipes and the sink to clean up in. God Bless and Good Luck

Hello

My lumpectomy and sentinel biopsy were five years ago. I, too, had surgery on a Thursday and because I didn't know what to expect I took the following week off from work. Honestly, I could have gone back Monday. I went on my morning walk the next day, went to a baby shower on Saturday. Never needed pain medication. I did develop a seroma under my arm which actually was more bothersome than either surgery site. I've read many horror stories about the injections for the sentinel node biopsy, but mine was another non-event as I hope yours will be. 

Radiation went fine. And I've just completed five years of Arimidex. My only real side effect from the Arimidex has been going from ostopenia to osteoporosis so because of that, the oncologist suggested I not continue another five years as many others are doing.

Because we're all so wildly different and react to things differently, your path may not be as smooth as mine has been so far, but I sure hope it is:)

Keep us posted.

xoxo

Victoria

irisheyes14

donnamarie68 said:

just went through the same thing

I was dx with stage 1 breast cancer in july, had my lumpectomy in  Aug.Had to wait almost 6 weeks for radiation it took that long for fluid to be absorbed back into my body around the lumpectomy.Radiation was then a one week, twice a day, 6hr. apart treatment course were tubes where inserted through another incision and then 4 days later  I was put in a MRI machine to make sure tubes hadnt moved. The MRI was run on me every day twice a day before treatments. On day 5 they took out tubes and it was all over. I had a great team but did not know what to expect because was told everyone is different. The biopsy was the most painful for me but others say it wasnt so bad. Read all you can, dont be afaid to tell them if it hurts, no question is stupid its your body ask anything you want to. Because of the type of radiation I could not bath or shower for a month. That was a long month lol. I had lots of baby wipes and the sink to clean up in. God Bless and Good Luck

Thanks so much Donnamarie.

Thanks so much Donnamarie.  Glad all went well for you.  That must have been a long month lol

irisheyes14

aisling8 said:

Hello

My lumpectomy and sentinel biopsy were five years ago. I, too, had surgery on a Thursday and because I didn't know what to expect I took the following week off from work. Honestly, I could have gone back Monday. I went on my morning walk the next day, went to a baby shower on Saturday. Never needed pain medication. I did develop a seroma under my arm which actually was more bothersome than either surgery site. I've read many horror stories about the injections for the sentinel node biopsy, but mine was another non-event as I hope yours will be. 

Radiation went fine. And I've just completed five years of Arimidex. My only real side effect from the Arimidex has been going from ostopenia to osteoporosis so because of that, the oncologist suggested I not continue another five years as many others are doing.

Because we're all so wildly different and react to things differently, your path may not be as smooth as mine has been so far, but I sure hope it is:)

Keep us posted.

xoxo

Victoria

Thanks Victoria.  Glad all

Thanks Victoria.  Glad all went very smooth for you.  So grateful for all the advice and good wishes on here.  Really makes you feel you're not alone on the journey and other people really understand.  Will keep you posted. 

irisheyes14

Post surgery.

Hi all.  Realeased from hospital today after having tumor and 1 sen node removed.  Unfortunately, I had bronchial problems during the anesthetic so had to stay in an extra night.  Just feeling a little tender under the arm but pain killers are keeping it at bay. Making the most of being waited on hand and foot today, no doubt things will be back to normal tomorrow!  Another week now to wait for results so hoping for clear margins and no node involvement.  Think the waiting part really is the worst. All the good advice on here during the past week has helped me greatly. 

Puffin2014

irisheyes14 said:

Post surgery.

Hi all.  Realeased from hospital today after having tumor and 1 sen node removed.  Unfortunately, I had bronchial problems during the anesthetic so had to stay in an extra night.  Just feeling a little tender under the arm but pain killers are keeping it at bay. Making the most of being waited on hand and foot today, no doubt things will be back to normal tomorrow!  Another week now to wait for results so hoping for clear margins and no node involvement.  Think the waiting part really is the worst. All the good advice on here during the past week has helped me greatly. 

sentinel node incision

Sorry you had respiratory problems after surgery but good that you're home now

Many ladies find that the sentinel node incision gives more discomfort than the breast incision - normal to feel lots of lumps along the incision. Mine felt like wet cardboard was underneath and it didn't move well when I moved. My surgeon said I could use either cold or warm packs, but just to be careful of the temp since that area would have decreased sensation. I found heat worked well for me, I had one of those long grain filled tubes that you microwave for neck pain. I'd start one end by my neck and wrap it down under my arm pit and around my breast when I rested in the recliner. It hit both of my incisions, and really felt good. A friend of mine had better luck with an ice pack. Try both. Also be prepared that it takes a long time for the aching to go away. Mine is still tender to touch at times and it's been over a year. Use a little pillow to support breast when you sleep, also pillow under seat belt in the car.

irisheyes14

Puffin2014 said:

sentinel node incision

Sorry you had respiratory problems after surgery but good that you're home now

Many ladies find that the sentinel node incision gives more discomfort than the breast incision - normal to feel lots of lumps along the incision. Mine felt like wet cardboard was underneath and it didn't move well when I moved. My surgeon said I could use either cold or warm packs, but just to be careful of the temp since that area would have decreased sensation. I found heat worked well for me, I had one of those long grain filled tubes that you microwave for neck pain. I'd start one end by my neck and wrap it down under my arm pit and around my breast when I rested in the recliner. It hit both of my incisions, and really felt good. A friend of mine had better luck with an ice pack. Try both. Also be prepared that it takes a long time for the aching to go away. Mine is still tender to touch at times and it's been over a year. Use a little pillow to support breast when you sleep, also pillow under seat belt in the car.

Thanks Puffin.  Your advice

Thanks Puffin.  Your advice is always very welcome.

 

irisheyes14

Oncotype test back

Hi All.  Just to touch base, I received my oncotype test result back today and it is 18.  Very happy and relieved that my Oncologyst said no chemo needed only need for  radiation and hormone therapy.  Just wondering if anyone else had a score of 18 and as it is boarderline, was chemo suggested?.

 Definitely agree with a lot of ladies on here who say the waiting on results is the most stressful time!  

Puffin2014

irisheyes14 said:

Oncotype test back

Hi All.  Just to touch base, I received my oncotype test result back today and it is 18.  Very happy and relieved that my Oncologyst said no chemo needed only need for  radiation and hormone therapy.  Just wondering if anyone else had a score of 18 and as it is boarderline, was chemo suggested?.

 Definitely agree with a lot of ladies on here who say the waiting on results is the most stressful time!  

thanks for posting

what good news about your onco score! Mine was 27 so no discussion at all about whether I needed chemo. From talking to ladies in my local support group, seems like chemo wasn't being suggested as something to think about until their scores were in the 23/24 range.

AmistadLakeGirl

Thankful

My lumpectomy was November 19th, they thought it was a Radial Scar....it actually was cancer....they got it all and clean margins, my lymph node biopsy came back clean  as well as my cat scans, but my Oncotype DX was a 26....tears fell that day....well several different days, but especially that day.  Chemo.....I thought I was just going to end up doing Radiation.  Now I am scheduling for a port-a-cath then start chemo Jan 5th.  I am 49 years old, wishing my mommy was still alive so I could crawl up in her lap and her tell me everything was going to be OK!!!  I have the sweetest, kindest, most loving husband that has been an Angel through this all!!  I will admit I am a little scared of what the chemo will do to me and how I will feel!!  But I am going to put on my Big Girl Panties and Fight Like a Girl!!!! 

God Bless you ladies and Merry Christmas

irisheyes14

AmistadLakeGirl said:

Thankful

My lumpectomy was November 19th, they thought it was a Radial Scar....it actually was cancer....they got it all and clean margins, my lymph node biopsy came back clean  as well as my cat scans, but my Oncotype DX was a 26....tears fell that day....well several different days, but especially that day.  Chemo.....I thought I was just going to end up doing Radiation.  Now I am scheduling for a port-a-cath then start chemo Jan 5th.  I am 49 years old, wishing my mommy was still alive so I could crawl up in her lap and her tell me everything was going to be OK!!!  I have the sweetest, kindest, most loving husband that has been an Angel through this all!!  I will admit I am a little scared of what the chemo will do to me and how I will feel!!  But I am going to put on my Big Girl Panties and Fight Like a Girl!!!! 

God Bless you ladies and Merry Christmas

Amistadlakegirl...  Hugs.

Amistadlakegirl...  Hugs.  I've also gone through that missing my mum stage since being diognosed.   I too was told mine was possibly a radial scar but when the results of the biopsy came back, it was a 1cm stage 1 tumor and two .5mm .  I've escaped chemo as my onco result came back at 18 and am due to see my doctor beginning of January to discuss radiation treatment.  Just waiting for MRI results at the moment.  There really is great support on here from lades who have been terrified of and gone through chemo and the vast majority say it was doable. All the support on here has helped me a lot and like you, I fully intend to Fight like a girl!!  I refer to it as the little C as don't want to give it the glory of calling it BIG  Good luck on the 5th and keep us posted. 

irisheyes14

Puffin2014 said:

thanks for posting

what good news about your onco score! Mine was 27 so no discussion at all about whether I needed chemo. From talking to ladies in my local support group, seems like chemo wasn't being suggested as something to think about until their scores were in the 23/24 range.

Yes, Puffin my oncologyst

Yes, Puffin my oncologyst also mentioned that anything under the 25 range was now questionable whether chemo would be of any benefit. Unfortunately that intermediate range is still a grey area and probably needs a lot more research. 

Just_lori6

irisheyes14 said:

Amistadlakegirl...  Hugs.

Amistadlakegirl...  Hugs.  I've also gone through that missing my mum stage since being diognosed.   I too was told mine was possibly a radial scar but when the results of the biopsy came back, it was a 1cm stage 1 tumor and two .5mm .  I've escaped chemo as my onco result came back at 18 and am due to see my doctor beginning of January to discuss radiation treatment.  Just waiting for MRI results at the moment.  There really is great support on here from lades who have been terrified of and gone through chemo and the vast majority say it was doable. All the support on here has helped me a lot and like you, I fully intend to Fight like a girl!!  I refer to it as the little C as don't want to give it the glory of calling it BIG  Good luck on the 5th and keep us posted. 

Hello

Hi, 

My cancer is different than yours but I am starting chemo today, sitting in the chair right now in fact. I was terrified but it is not bad. The nurse is very nice & has gone over all the side effects  (I will lose my hair) & has answered any questions me and my husband have had. She's offered me drinks & snacks (not hungry) & we are in a room with a recliner for me & 2 extra chairs for company. There is a tv and lots of movies to chose from. Long story short~ don't let yourself stress it, it's not too bad. I figure if losing my hair is what it takes to be cured I can handle it. My mother went on vacation when I was 16 leaving me and my twin. She never came back. She has contacted other family members so no she did not pass away in an accident. Just left us. I think all the time my parents are supposed to be here to help us kids get through stuff like this but it doesn't always go that way.

Best wishes & don't worry you'll be fine 8)

~Lori

mariways

AmistadLakeGirl said:

Thankful

My lumpectomy was November 19th, they thought it was a Radial Scar....it actually was cancer....they got it all and clean margins, my lymph node biopsy came back clean  as well as my cat scans, but my Oncotype DX was a 26....tears fell that day....well several different days, but especially that day.  Chemo.....I thought I was just going to end up doing Radiation.  Now I am scheduling for a port-a-cath then start chemo Jan 5th.  I am 49 years old, wishing my mommy was still alive so I could crawl up in her lap and her tell me everything was going to be OK!!!  I have the sweetest, kindest, most loving husband that has been an Angel through this all!!  I will admit I am a little scared of what the chemo will do to me and how I will feel!!  But I am going to put on my Big Girl Panties and Fight Like a Girl!!!! 

God Bless you ladies and Merry Christmas

xoxoxo

You go, girl! Hugs.