Absolutely furious!

tasha_111

Have just been researching my latest drama, went to the johns hopkins site to learn that chemo is NOT needed for DCIS as it is Non-invasive... So why the hell did I have to go through that **** when I had dcis?  I am spitting feathers here!!! 

Josie21

Hi

I am so sorry you have to deal with cancer again.   Three years before I had invasive lobular carcinoma I had DCIS in the opposite breast.  At no time did they discuss chemo with me.  What did they tell you at the time?  Please let us know.  I will add you to my prayer list.  

Sending hugs your way,

Ginny

Josie21

Josie21 said:

Hi

I am so sorry you have to deal with cancer again.   Three years before I had invasive lobular carcinoma I had DCIS in the opposite breast.  At no time did they discuss chemo with me.  What did they tell you at the time?  Please let us know.  I will add you to my prayer list.  

Sending hugs your way,

Ginny

Hi again

I just went on another site and asked if any women had chemo with DCIS and there were many women who did.  They said they received chemo because of the size and aggressiveness of the tumor.  I hope your oncologist explains why they did chemo next time you go.  I had no idea chemo helped DCIS.  

More hugs,

Ginny

cinnamonsmile

I would be mad as heck,too. I

I would be mad as heck,too. I can't believe they gave you chemo for DCIS. I have only read of one or two other women that had chemo for DCIS. It is not standard treatment. I can't believe your oncologist ordered it for you?? Are you absolutely you didn't have an ivasive component the first time? Maybe check your pathology report?

Chemo is NOT standard for DCIS and really shouldn't be applied. Chemo is for systemic treatments and DCIS is ONLY in the milk ducts. Since DCIS is ONLY in the milk ducts, chemo is not needed. Chemo for DCIS is definitely over treatment.

Anyway, if I were in your shoes, it would be hard for me to remain calm and not call up and let em have it.

I hope you can find some peace eventually.

Did they give you rads, too?

tasha_111

cinnamonsmile said:

I would be mad as heck,too. I

I would be mad as heck,too. I can't believe they gave you chemo for DCIS. I have only read of one or two other women that had chemo for DCIS. It is not standard treatment. I can't believe your oncologist ordered it for you?? Are you absolutely you didn't have an ivasive component the first time? Maybe check your pathology report?

Chemo is NOT standard for DCIS and really shouldn't be applied. Chemo is for systemic treatments and DCIS is ONLY in the milk ducts. Since DCIS is ONLY in the milk ducts, chemo is not needed. Chemo for DCIS is definitely over treatment.

Anyway, if I were in your shoes, it would be hard for me to remain calm and not call up and let em have it.

I hope you can find some peace eventually.

Did they give you rads, too?

Cinnamonsmile

I am going to sue that ****-head of an onco! Yup rads and surgery too... I hate that GIT!  hugs j xxxxxxxxx

 

disneyfan2008

I had DCIS and had lumpectomy

I had DCIS and had lumpectomy and radiation! That is the only experince I have-so not sure..I HOPE YOU get more imput here from others..

Denise

disneyfan2008

were any nodes involved?
 

were any nodes involved?

 

burcu123

tasha_111 said:

Cinnamonsmile

I am going to sue that ****-head of an onco! Yup rads and surgery too... I hate that GIT!  hugs j xxxxxxxxx

 

ask your oncologgist first

Ask your oncologist first ,may be there was something different in your situation.

We are all mad do not forget, it was not your surgeon, oncologist or radiation doctor that gave you cancer.

No one knows why you got it. It was not your fault either. Bad things happen to good people all the time. Your doctors tried to save your life, they are human too they may make mistakes, but you have a right to ask why you needed chemo. Your oncologist should be able to answer your questions.

CypressCynthia

Talk with your oncologist. 

Talk with your oncologist.  Was your DCIS an aggressive type? If you are not getting clear answers, get a second opinion.  I have gotten quite a few along my journey just to better understand my cancer and to make sure no stone is left unturned.

"If the DCIS is large, high-grade, and comedo type, for example, it is likely to be more aggressive, and your doctor may recommend more extensive treatment. The same holds true if you are under age 40, since younger age may increase the risk of recurrence".

http://www.breastcancer.org/symptoms/types/dcis/treatment

Lynn Smith

I didn't have chemo

I didnt have chemo or radiation with DCIS. The tumor was 1/2 centimeter.If your tumor was small and you have DCIS I don't know why you had chemo..My tumor was localized.My check margin surgery was good. I just take tamoxifin for 5 years.

Lynn Smith

Christmas Girl

CypressCynthia said:

Talk with your oncologist. 

Talk with your oncologist.  Was your DCIS an aggressive type? If you are not getting clear answers, get a second opinion.  I have gotten quite a few along my journey just to better understand my cancer and to make sure no stone is left unturned.

"If the DCIS is large, high-grade, and comedo type, for example, it is likely to be more aggressive, and your doctor may recommend more extensive treatment. The same holds true if you are under age 40, since younger age may increase the risk of recurrence".

http://www.breastcancer.org/symptoms/types/dcis/treatment

My 2nd BC DX...

... was also DCIS (completely different than 1st BC). Despite some of the information here - there are, indeed, some circumstances that bring chemo into the recommended treatment protocol. DCIS can be non-invasive -or- invasive. In addition to CC's info above - Invasive DCIS (in simple terms): it has 'broken through' the duct.

My 2nd time: mammo, ultrasound, biopsy, MRI, lumpectomy surgery & rads. Although the cancer was 'seen' to be 'very tiny & contained' via all the pre-surgery imaging tests - chemo was not taken off the table until post-surgery pathology reports showed clean margins.

Kind regards, Susan

New Flower

Second time around

We all are high risk because we already have had cancer. often second time is treated my aggressively 

talk to your doctor

cinnamonsmile

Christmas Girl said:

My 2nd BC DX...

... was also DCIS (completely different than 1st BC). Despite some of the information here - there are, indeed, some circumstances that bring chemo into the recommended treatment protocol. DCIS can be non-invasive -or- invasive. In addition to CC's info above - Invasive DCIS (in simple terms): it has 'broken through' the duct.

My 2nd time: mammo, ultrasound, biopsy, MRI, lumpectomy surgery & rads. Although the cancer was 'seen' to be 'very tiny & contained' via all the pre-surgery imaging tests - chemo was not taken off the table until post-surgery pathology reports showed clean margins.

Kind regards, Susan

Invasive DCIS is called IDC.

Invasive DCIS is called IDC. DCIS occurs ONLY within the milk ducts. Once it breaks out it is IDC, even if it is a micro invasion it is called DCIS w/micro invasion and is considered Stage 1.(http://books.google.com/books?id=eLfgMzfJEQ4C&pg=PT30&lpg=PT30&dq=dcis+with+microinvasion&source=bl&ots=ybUdhIGcA5&sig=8sTyDqKKBmIG--KgIh9fC6ANqDo&hl=en&sa=X&ei=NJS4Ubv1IKnD0AGm1oHADA&ved=0CEgQ6AEwAw#v=onepage&q&f=false)

Chemo might be a part of the equation with DCIS and IDC.It depends on the cancer facts for that particular person.

Can you give me a link to the information that says DCIS can be invasive? I am interested in reading about it. Thanks!!

tasha_111

Christmas Girl said:

My 2nd BC DX...

... was also DCIS (completely different than 1st BC). Despite some of the information here - there are, indeed, some circumstances that bring chemo into the recommended treatment protocol. DCIS can be non-invasive -or- invasive. In addition to CC's info above - Invasive DCIS (in simple terms): it has 'broken through' the duct.

My 2nd time: mammo, ultrasound, biopsy, MRI, lumpectomy surgery & rads. Although the cancer was 'seen' to be 'very tiny & contained' via all the pre-surgery imaging tests - chemo was not taken off the table until post-surgery pathology reports showed clean margins.

Kind regards, Susan

Dx... idc... vs dcis.

Ok, as you will all understand, I was well confused... it was invasive, as I had to have all lymph nodes removed.  Now I have my fingers crossed that ; this time, it has not mets to anywhere.  If localised they have recommended a radical bi-lateral mastectomy (eww and yuck and ouch), If mets, well, no further treatment. Have reached my radiation limit and chemo alone would not solve the problem.  Thanks all.  Tasha....... J xxx

 

CypressCynthia

tasha_111 said:

Dx... idc... vs dcis.

Ok, as you will all understand, I was well confused... it was invasive, as I had to have all lymph nodes removed.  Now I have my fingers crossed that ; this time, it has not mets to anywhere.  If localised they have recommended a radical bi-lateral mastectomy (eww and yuck and ouch), If mets, well, no further treatment. Have reached my radiation limit and chemo alone would not solve the problem.  Thanks all.  Tasha....... J xxx

 

Invasive Ductal Carcinoma is

Invasive Ductal Carcinoma is very different.  Definitely not DCIS. 

Do you know anything about the pathology?  Is your tumor estrogen receptor positive, her2neu positive or triple negative? 

There are many individualized treatments for this disease.  Many of us here have mets (I have had mets since 2005) and also had many other treatments.  Depending on the pathology, many of us can live quite some time with this disease.

P.S. I had Stage 3A IDC (4 nodes, large tumor) and had an 18 year remission after mastectomy, radiation, chemotherapy and tamoxifen.  I am fighting again, but not about to give up!  I strongly believe that my adherence to treatment has helped with my survival.

CypressCynthia

Pathology Report

Here is a link that may help you understand more about your pathology report:

http://ww5.komen.org/BreastCancer/ContentsofaPathologyReport.html

CypressCynthia

P.S. Do not worry about this

P.S. Do not worry about this mistake!  You are dealing with a lot and in shock!  Hang in there and please keep in touch.  Know we are here for you for support and to answer any questions that we can.  Gentle (((hugs))).

tasha_111

CypressCynthia said:

P.S. Do not worry about this

P.S. Do not worry about this mistake!  You are dealing with a lot and in shock!  Hang in there and please keep in touch.  Know we are here for you for support and to answer any questions that we can.  Gentle (((hugs))).

Cypress

Hi again.  Yes, did get dome info, her+ idc last time st2.  This time waiting for tests and staging, fingers crossed. At least this time I got it checked as soon as possible rather than 'sitting on it' for three years hoping it would go away on its own. (like I did last time).  Thanks for your help.  Jx