IDC and High-grade/extensive DCIS, both left breast, ER+, PR+, HER2-, Stage 2A, Grade 3+, Waiting on

vickiek811

I was diagnosed in October with invasive ductal carcinoma and high-grade extensive DCIS, Grade 3+, Stage 2A, "unfavorable" Ki67.  I chose a lumpectomy and had the surgery on 11/14/14.  Originally, the treatment plan was going to be radiation (30 rounds) and Tamoxifen (Hormone therapy) for the first five years, then a different hormone therapy the following five years.  My medical oncologist stated he was kind of stumped because having clear lymph nodes, chemo is not always the best option.  He went ahead with the oncotyping to check for chemo's ability to work, and if so, which chemo will work best.  It will also show the possible recurrent rate.  He said with my mother's previous Stage 4 ovarian cancer (30 year survivor this past May), chemo may not be totally out of the question.  I will find out the test results and the treatment plan on 12/11/14.  Has anyone else been faced with this same dilemma?  Is it wise to request chemo even if the oncotyping comes back that chemo will not be effective?  I want to cover myself with every option possible, but also do not want to dump toxic chemicals in my body if they really will not help.  I am very anxious to find out what the doctor is going to recommend.  Any advice and previous experience is greatly appreciated.  Thanks!  Vickie

Desmonds1

Hi Vickie
i am the same Er+,

Hi Vickie

i am the same Er+, pr+ and her2- but stage four so I had chemo(finished in August)-

it sounds like your head is in the right place and wait for test results- chemo is not exactly like going to GNC (lol)-

thanks for sharing your Moms inspiring story.

wishing you well!

Susan

Puffin2014

oncotype

Did your oncologist explain how they score the oncotype test? Mine didn't at first, just said it was scored from zero to 100, low score chemo not effective and not indicated, high score definitely chemo, in between "we'll discuss it". In my mind I divided the scores into thirds, like 33, 66 and in between. Wrong. Low score means 10 or under, high score means 30 and above. I was 27, not much discussing, had chemo July, Aug, and Sep of this year. I also had lumpectomy so had radiation in Oct, qualified for the Canadian model of only 3 weeks (postmenopausal, small tumor, clean nodes, estrogen +), have now been on Arimidex for almost a month. From what I've read from what others have posted, most do the chemo if their scores are 22 and above. See what your score is, talk to your onc and see what he recommends.

I had cytoxin and taxotere, no problems with nausea or vomiting (they have great premeds for that now), of course had other side effects but found ways to deal with them.

Keep us posted, we're all here for you.

vickiek811

Puffin2014 said:

oncotype

Did your oncologist explain how they score the oncotype test? Mine didn't at first, just said it was scored from zero to 100, low score chemo not effective and not indicated, high score definitely chemo, in between "we'll discuss it". In my mind I divided the scores into thirds, like 33, 66 and in between. Wrong. Low score means 10 or under, high score means 30 and above. I was 27, not much discussing, had chemo July, Aug, and Sep of this year. I also had lumpectomy so had radiation in Oct, qualified for the Canadian model of only 3 weeks (postmenopausal, small tumor, clean nodes, estrogen +), have now been on Arimidex for almost a month. From what I've read from what others have posted, most do the chemo if their scores are 22 and above. See what your score is, talk to your onc and see what he recommends.

I had cytoxin and taxotere, no problems with nausea or vomiting (they have great premeds for that now), of course had other side effects but found ways to deal with them.

Keep us posted, we're all here for you.

Yes, the oncologist explained

Yes, the oncologist explained that the lower the score the least likely he would recommend chemo at all.  I guess what he is concerned about is the family history, the size of the tumors, that there were two tumors, and the invasive one was widespread.  The DCIS tumor reportedly grew super fast from time of biopsy to removal.  All these together scare the heck out of me to NOT make the wrong decision, if a decision is up to me.  I want to do whatever will help me.  I work full-time in mental health, a single-parent (luckily my youngest is the only one still living at home and he is almost 18, works and heading to college in the fall), good support from my family, friends, and co-workers.  However, if it will be a decision made partly on my behalf, I want to make the right decision.  Monday, I have to go in for a second endoscopy with the GI oncologist as they were concerned with cancer cells in the digestive tract.  I have other health conditions, so she is erring on the side of caution and if there is no cancer in the GI then I will be referred to our local Mayo Clinic for follow up care.  If I need radiation (and no chemo), they will schedule me for 30 rounds and start me on the Tamoxifen.  I actually think the radiation scares me more than possible chemo right now.  With one of my other health issues, I have severe nerve damage and the thought of 2nd degree burns scares me.  The radiation oncologist gave me a full huge bottle of Aloe gel and told me to use that to start with and he will advance me to something else, if I need it.  I am 3 weeks and 2 days post op.  My apppointment with the oncologist is on Thursday, 12/11, so I am beginning to feel the anxiety.  My cancer center is linked up with a hospital that uploads all test results into a system that the patient can log onto and retrieve them.  There are times I have received my results before going to see the doctor.  I did that with the PET scan and read on the report that there is a small spiculated nodule in the right lung.  The oncologist mentioned it the last time I was in to see him and he said it is too small to biopsy, it may be cancer, but right now he chooses the wait and watch model for it.  I guess if there is huge concern, and if the oncotype score is high enough, chemo could possibly help with that, too.  It is all very confusing and I hate speculating, hate waiting, but medicine is such a waiting game,,,, much better than in the past, though.  Thank you so much for your response. 

New Flower

vickiek811 said:

Yes, the oncologist explained

Yes, the oncologist explained that the lower the score the least likely he would recommend chemo at all.  I guess what he is concerned about is the family history, the size of the tumors, that there were two tumors, and the invasive one was widespread.  The DCIS tumor reportedly grew super fast from time of biopsy to removal.  All these together scare the heck out of me to NOT make the wrong decision, if a decision is up to me.  I want to do whatever will help me.  I work full-time in mental health, a single-parent (luckily my youngest is the only one still living at home and he is almost 18, works and heading to college in the fall), good support from my family, friends, and co-workers.  However, if it will be a decision made partly on my behalf, I want to make the right decision.  Monday, I have to go in for a second endoscopy with the GI oncologist as they were concerned with cancer cells in the digestive tract.  I have other health conditions, so she is erring on the side of caution and if there is no cancer in the GI then I will be referred to our local Mayo Clinic for follow up care.  If I need radiation (and no chemo), they will schedule me for 30 rounds and start me on the Tamoxifen.  I actually think the radiation scares me more than possible chemo right now.  With one of my other health issues, I have severe nerve damage and the thought of 2nd degree burns scares me.  The radiation oncologist gave me a full huge bottle of Aloe gel and told me to use that to start with and he will advance me to something else, if I need it.  I am 3 weeks and 2 days post op.  My apppointment with the oncologist is on Thursday, 12/11, so I am beginning to feel the anxiety.  My cancer center is linked up with a hospital that uploads all test results into a system that the patient can log onto and retrieve them.  There are times I have received my results before going to see the doctor.  I did that with the PET scan and read on the report that there is a small spiculated nodule in the right lung.  The oncologist mentioned it the last time I was in to see him and he said it is too small to biopsy, it may be cancer, but right now he chooses the wait and watch model for it.  I guess if there is huge concern, and if the oncotype score is high enough, chemo could possibly help with that, too.  It is all very confusing and I hate speculating, hate waiting, but medicine is such a waiting game,,,, much better than in the past, though.  Thank you so much for your response. 

Hi Vickie

Have you done genetic testing? I some patients ovarian and breast cancers are related and controlled by the same genes. Often family history is considered a high risk. Good luck with onco type  test

radiation therapy is important to prevent local recurrence, it usually recommended with lumpectomy 

we will be waiting for results and treatment plan with you

vickiek811

New Flower said:

Hi Vickie

Have you done genetic testing? I some patients ovarian and breast cancers are related and controlled by the same genes. Often family history is considered a high risk. Good luck with onco type  test

radiation therapy is important to prevent local recurrence, it usually recommended with lumpectomy 

we will be waiting for results and treatment plan with you

My surgical oncologist

My surgical oncologist recommended I have genetic testing, but when they called to schedule with me, they told me the consultation fee in and of itself was $600.  The test was going to be even more than that.  I refused to go because according to the genetic scheduler, my health insurance will not cover it.  I am a divorced parent working off of a social worker's salary and most of time now is on FMLA.  When I saw my medical oncologist a couple of weeks ago, he told me he does want me to have it done.  I called my Nurse Navigator and asked her to check with the Foundation to see if there is any money available to help me (I'm with MD Anderson).  I am waiting to hear from financial assistance right now.  I do want the genetic testing, one reason why the M.O was indecisive about not excluding chemo even though my lymph nodes came out clear.  I, also, at the same time as my breast cancer diagnosis, had a pre-cancerous pap test and have been referred for further testing by a gyn on 12/22.  It all is becoming quite concering.  I definitely will be having radiation, but when I have it will depend on what the M.O. decides about the chemo.  I'll update on Thursday.  Thanks for your response

Puffin2014

vickiek811 said:

My surgical oncologist

My surgical oncologist recommended I have genetic testing, but when they called to schedule with me, they told me the consultation fee in and of itself was $600.  The test was going to be even more than that.  I refused to go because according to the genetic scheduler, my health insurance will not cover it.  I am a divorced parent working off of a social worker's salary and most of time now is on FMLA.  When I saw my medical oncologist a couple of weeks ago, he told me he does want me to have it done.  I called my Nurse Navigator and asked her to check with the Foundation to see if there is any money available to help me (I'm with MD Anderson).  I am waiting to hear from financial assistance right now.  I do want the genetic testing, one reason why the M.O was indecisive about not excluding chemo even though my lymph nodes came out clear.  I, also, at the same time as my breast cancer diagnosis, had a pre-cancerous pap test and have been referred for further testing by a gyn on 12/22.  It all is becoming quite concering.  I definitely will be having radiation, but when I have it will depend on what the M.O. decides about the chemo.  I'll update on Thursday.  Thanks for your response

oncotype

when I was waiting for my oncotype results I prayed that the score would be definitive and not in the grey area. 27 wasn't exactly what I was hoping for, but at least it was definitive, and now I know I've done everything possible to stop the cancer.

As for the radiation, everyone is different and not everyone blisters. My skin got just slightly pink, I had little trouble with fatigue, did have a very tender nipple and got occasional zinger pains through my breast, but overall found radiation to be manageable.

If you haven't checked out breastcancer.org be sure you check that site out too, my oncologist recommended it. The discussion forums there are divided by topic, so you can follow just the ones that pertain to you. I followed the lumpectomy one for awhile, then the July chemo, then the fall rads, and am now active in the Arimidex and the Hair Hair Hair ones. Just be sure and mark any you like as favorites so it's easy to find them again as they have so many.

Let us know what you find out on Thursday.

vickiek811

Puffin2014 said:

oncotype

when I was waiting for my oncotype results I prayed that the score would be definitive and not in the grey area. 27 wasn't exactly what I was hoping for, but at least it was definitive, and now I know I've done everything possible to stop the cancer.

As for the radiation, everyone is different and not everyone blisters. My skin got just slightly pink, I had little trouble with fatigue, did have a very tender nipple and got occasional zinger pains through my breast, but overall found radiation to be manageable.

If you haven't checked out breastcancer.org be sure you check that site out too, my oncologist recommended it. The discussion forums there are divided by topic, so you can follow just the ones that pertain to you. I followed the lumpectomy one for awhile, then the July chemo, then the fall rads, and am now active in the Arimidex and the Hair Hair Hair ones. Just be sure and mark any you like as favorites so it's easy to find them again as they have so many.

Let us know what you find out on Thursday.

Thank you for your response,

Thank you for your response, Puffin2014.  I, too, am hoping for a lower score from the oncotyping.  But then, I also want to make sure I get the best treatment possible as recommended.  I've read so many articles about a high recurrence of my type of breast cancer when only the lumpectomy was done.  Now, my decision worries me.  I am also worried because of the spot found in the lung and hip bone. I heard when the score is in the mid-range, the oncologists typically leave it up to the patient on what they want to do.  I'm worried I will fall into the category since I am ER+, PR+, and HER2-.  I'm not good at making decisions, especially where the outcome is very indecisive.  It would be hard for me to force myself into chemo because of the side effects, but if the doctor recommended it, or I was guaranteed the best outcome, the dicision would be a no-brainer.  Guess I will just wait until Thursday.

I had the endoscopy today and I am very sore and exhausted.  I tried to work several hours after it -- not a good idea.  She did not see cancer cells of the intestines or stomach, but she found a cyst in the pancreas.  It has been sent off to pathology.  She said she took "a lot" of biopsies and if they all come back negative, she will refer me onto Mayo Clinic because then it leans toward morphine-use damage.

Those sharp pains you mention, I also started to get this past weekend.  My surgeon told me it was the nerves growing back.  They are quite painful and feel like lightning bolts going through.

Thank you for the link to breastcancer.org.  I had previously joined an on-line forum (WhatNext) and it broke it down by topic.  I thought it was not as supportive as here, more negative messages about what my medical team has recommended.  That caused more anxiety and depression because I fully trust my team.  I have not found that here.  There is much more compassion on this forum.  I will check out the one you recommend, thank you.

Today, I see my Neurologist who I have had for years for my other health condition.  I have lots of updates for her.  I'll post a follow up after Thursday, meet with medical oncologist at 2:00pm Arizona time.

Thank you for your response.  Vickie

Puffin2014

vickiek811 said:

Thank you for your response,

Thank you for your response, Puffin2014.  I, too, am hoping for a lower score from the oncotyping.  But then, I also want to make sure I get the best treatment possible as recommended.  I've read so many articles about a high recurrence of my type of breast cancer when only the lumpectomy was done.  Now, my decision worries me.  I am also worried because of the spot found in the lung and hip bone. I heard when the score is in the mid-range, the oncologists typically leave it up to the patient on what they want to do.  I'm worried I will fall into the category since I am ER+, PR+, and HER2-.  I'm not good at making decisions, especially where the outcome is very indecisive.  It would be hard for me to force myself into chemo because of the side effects, but if the doctor recommended it, or I was guaranteed the best outcome, the dicision would be a no-brainer.  Guess I will just wait until Thursday.

I had the endoscopy today and I am very sore and exhausted.  I tried to work several hours after it -- not a good idea.  She did not see cancer cells of the intestines or stomach, but she found a cyst in the pancreas.  It has been sent off to pathology.  She said she took "a lot" of biopsies and if they all come back negative, she will refer me onto Mayo Clinic because then it leans toward morphine-use damage.

Those sharp pains you mention, I also started to get this past weekend.  My surgeon told me it was the nerves growing back.  They are quite painful and feel like lightning bolts going through.

Thank you for the link to breastcancer.org.  I had previously joined an on-line forum (WhatNext) and it broke it down by topic.  I thought it was not as supportive as here, more negative messages about what my medical team has recommended.  That caused more anxiety and depression because I fully trust my team.  I have not found that here.  There is much more compassion on this forum.  I will check out the one you recommend, thank you.

Today, I see my Neurologist who I have had for years for my other health condition.  I have lots of updates for her.  I'll post a follow up after Thursday, meet with medical oncologist at 2:00pm Arizona time.

Thank you for your response.  Vickie

oncotype prayers

I hadn't really prayed for a low score. Although I hoped for a low score I'd prayed for a score that I didn't have to make a decision in the grey area. Guess God answered my prayer with a score high enough that it was obvious what I needed to do. Whatever decision you make decide not to look back with regrets but just decide it was the best decision you were able to make at the time for you.

taysho

Hi Vickie, I am pretty much

Hi Vickie, I am pretty much in the same boat as you ER+ PR+ Her- grade 3 stage 2 IDC. I was 27 at diagnosis with no family history and this wasn't a game I wanted to play so I chose to have a double mastectomy on 11-19-14 My oncologist said from the beginning that I should do chemo... I go Monday to have labs and will hopefully start the end of next week. They took lymphnodes from both sides and found less than 10 cancerous cells, so I'm still considered node negative. I know how crazy this all is, I am glad that my team of doctors were pro chemo from the beginning so the few cells in the lymph nodes didn't really change the plan for me. I know this doesn't help a whole lot, but I found comfort in knowing I'm not alone!

Best of luck!

Tayla

jamiesurleplage

vickiek811 said:

My surgical oncologist

My surgical oncologist recommended I have genetic testing, but when they called to schedule with me, they told me the consultation fee in and of itself was $600.  The test was going to be even more than that.  I refused to go because according to the genetic scheduler, my health insurance will not cover it.  I am a divorced parent working off of a social worker's salary and most of time now is on FMLA.  When I saw my medical oncologist a couple of weeks ago, he told me he does want me to have it done.  I called my Nurse Navigator and asked her to check with the Foundation to see if there is any money available to help me (I'm with MD Anderson).  I am waiting to hear from financial assistance right now.  I do want the genetic testing, one reason why the M.O was indecisive about not excluding chemo even though my lymph nodes came out clear.  I, also, at the same time as my breast cancer diagnosis, had a pre-cancerous pap test and have been referred for further testing by a gyn on 12/22.  It all is becoming quite concering.  I definitely will be having radiation, but when I have it will depend on what the M.O. decides about the chemo.  I'll update on Thursday.  Thanks for your response

Genetic Testing

That's ridiculous to charge $600 for the consultation fee.  Have you called your insurance about the testing and they have told you for sure they do not pay for it?  My insurance covered all but $170 of the test.  I was able to get mine covered because I met certain criteria.  One is family history, but the other is your age at diagnoses.  I'm 45 and would have qualified based on my age alone without going over my family history.  I've been going to UCLA out here in Los Angeles for my treatment and they have a geneticist onsite that helped me.  They submitted my blood work to a company called Myriad and Myriad would have made payment arrangements for me, if needed.  It's definitely worth looking into.  Despite the history on my father's side of the family where a couple of my direct ancestors died from cancer before 50, my BRCA test came back negative.

vickiek811

jamiesurleplage said:

Genetic Testing

That's ridiculous to charge $600 for the consultation fee.  Have you called your insurance about the testing and they have told you for sure they do not pay for it?  My insurance covered all but $170 of the test.  I was able to get mine covered because I met certain criteria.  One is family history, but the other is your age at diagnoses.  I'm 45 and would have qualified based on my age alone without going over my family history.  I've been going to UCLA out here in Los Angeles for my treatment and they have a geneticist onsite that helped me.  They submitted my blood work to a company called Myriad and Myriad would have made payment arrangements for me, if needed.  It's definitely worth looking into.  Despite the history on my father's side of the family where a couple of my direct ancestors died from cancer before 50, my BRCA test came back negative.

Thank you for your reply.

Thank you for your reply.  That's very interesting and I will follow up with the insurance company.  I am with MD Anderson and their geneticists are through their main campus in phoenix (not Houston, TX).  When they called to schedule me, I specifically asked them if my insurance company will cover it (my deductibel and co-insurance have been met and I no longer have any co-pays).  They told me BCBS of AZ does not cover anything.  I found it hard to believe, but it was when I was first getting started with everything and I took it at face value.  Now, the medical oncologist would like to go ahead and do it.  The only family member with a history of cancer is my mother (a direct relationship obviously) and she had ovarian so there is a close link to the breast cancer.  I really would like to have it done, but not for all that money.  They have not called to re-schedule with me and the financial assistance person also has not called me to discuss it yet.  I will attempt to contact her again after I meet with the oncologist on Thursday.  When I asked them about payment options, they told me all they could do was give me a 20% decrease on the full amount, but it had to be paid in its entirety at time of appointment.  Nope!  I am a single parent on a social worker's salary and cannot even come up with that kind of money.  I just paid off my high-deductible for the year and a new starts in January.  You'd think these tests would be covered at a drop of a needle because it will help with early detection, leading to early diagnosis (or no diagnosis if preventive medicine is intervened soon enough).  Thanks for your information and I will definitely follow up with BCBS and the financial assistance person at MDA.

vickiek811

Puffin2014 said:

oncotype prayers

I hadn't really prayed for a low score. Although I hoped for a low score I'd prayed for a score that I didn't have to make a decision in the grey area. Guess God answered my prayer with a score high enough that it was obvious what I needed to do. Whatever decision you make decide not to look back with regrets but just decide it was the best decision you were able to make at the time for you.

I am hoping for a score that

I am hoping for a score that I will not have to make a crazy, on-the-spot decision.  I want the score to more or less point me in the direction that will tell me what I need to do.  I am hoping the medical oncologist will take yesterday's results from the endoscopy into consideration.  The GI doctor found a small spot in the pancreas and she took a ton of biopsies.  There was already a small spot detected in the right lung and on the right iliac wing (right hip bone).  All of these small spots are considered suspicious, but too small to biopsy.  If the MO chooses chemo because these have also been detected, I would be willing to go with that decision.  I guess I cannot guess and will need to wait until Thursday, so that is what I will do.  Thank you for your response.

VickiSam

taysho said:

Hi Vickie, I am pretty much

Hi Vickie, I am pretty much in the same boat as you ER+ PR+ Her- grade 3 stage 2 IDC. I was 27 at diagnosis with no family history and this wasn't a game I wanted to play so I chose to have a double mastectomy on 11-19-14 My oncologist said from the beginning that I should do chemo... I go Monday to have labs and will hopefully start the end of next week. They took lymphnodes from both sides and found less than 10 cancerous cells, so I'm still considered node negative. I know how crazy this all is, I am glad that my team of doctors were pro chemo from the beginning so the few cells in the lymph nodes didn't really change the plan for me. I know this doesn't help a whole lot, but I found comfort in knowing I'm not alone!

Best of luck!

Tayla

Continued strength - and health for all you .. Lovely

Ladies -- continue to post, ask questions and we promise to lend support and information that has been gathered by many us that have fought this beast ...

 

Vicki Sam

GlowMore

vickiek811 said:

Thank you for your reply.

Thank you for your reply.  That's very interesting and I will follow up with the insurance company.  I am with MD Anderson and their geneticists are through their main campus in phoenix (not Houston, TX).  When they called to schedule me, I specifically asked them if my insurance company will cover it (my deductibel and co-insurance have been met and I no longer have any co-pays).  They told me BCBS of AZ does not cover anything.  I found it hard to believe, but it was when I was first getting started with everything and I took it at face value.  Now, the medical oncologist would like to go ahead and do it.  The only family member with a history of cancer is my mother (a direct relationship obviously) and she had ovarian so there is a close link to the breast cancer.  I really would like to have it done, but not for all that money.  They have not called to re-schedule with me and the financial assistance person also has not called me to discuss it yet.  I will attempt to contact her again after I meet with the oncologist on Thursday.  When I asked them about payment options, they told me all they could do was give me a 20% decrease on the full amount, but it had to be paid in its entirety at time of appointment.  Nope!  I am a single parent on a social worker's salary and cannot even come up with that kind of money.  I just paid off my high-deductible for the year and a new starts in January.  You'd think these tests would be covered at a drop of a needle because it will help with early detection, leading to early diagnosis (or no diagnosis if preventive medicine is intervened soon enough).  Thanks for your information and I will definitely follow up with BCBS and the financial assistance person at MDA.

I'm hoping

I'm hoping that a source of funding will turn up for you on this Vickie811 ...there are many many funds out there from what I have heard but have never really researched it.  I think you are wise however about the money because isn't this just a test to determine whether or not to do chemo?    With all the spots showing up though I would think that a course of chemo would be indicated right there without that other test myself. 

A lot of us worked right thru our chemo with only a few days off when we were too sick to work...but they have wonderful meds today to help control all the side effects.   I hope you will be able to just take this thing one day at  time...you sound very level headed and working at MDA you have to have many connections who can give you very good advice. 

Thank you so much for sharing your experiences so clearly.  I feel blessed to see people like you and Puffin on here who are so direct and sharp and who deal with this thing with such intelligence.  Prayers for strength to face the anxiety...which is so debilitating.  Hang in there.   Glo