Newbie

Posted by hkc9890 @hkc9890, Dec 12, 2020

I was diagnosed Wednesday before Thanksgiving, invasive ductal carcinoma, triple negative. Next Tuesday meet the multidisciplinary team. I am a Nurse, but no oncology experience and waiting to hear what’s in store. Anybody have the same diagnosis and have any advice while I’m waiting for the plan?

@hkc9890 – It is very scary to hear the diagnosis- even though the surgeon greeted me after the biopsy saying- Congratulations! You have breast cancer- we can treat that!
I was diagnosed 28 years ago- invasive ductal, no lymph nodes, double negative- before they added the other marker.
I was working as a pediatrician then, but felt like a deer in headlights.
I had a mastectomy and chemo. Reconstruction too.
Chemo was tough for me, but I succeeded getting full dose each time. They check your CBC before each infusion.
For the 6 months of treatment, I worked 2 weeks, off 2 weeks.
I didn’t have any BRCA genes and a negative family history. However, recently my daughter went through genetic testing after iffy mammogram. She has a CHEK2 mutation that increases her risk of breast cancer as well as other cancers. I’m getting tested now myself. I have another daughter and a son and I would want them to know as well.
I agree that you should ask a lot of questions along the way.

REPLY
@syska

Hi! My diagnosis is very similar to yours. Stage 1, grade 3 TNBC in 2015. Was caught early so decided on a lumpectomy. We didn’t think too much about genetic testing as I only knew of my Dad’s sister who had breast cancer twice at different times. Then I started contacting my Mom’s side of the family and found a lot of secondary BRCA2 involvement. Pancreatic cancer, ovarian cancer, prostate cancer….
So on my check up later we did the genetic testing and it came back BRCA2. I never had children or pregnancies and still had my ovaries and Fallopian tubes which never caused me any issues over the years but they had to go and that has started another long journey over the past 4. After all this I am a strong believer in genetic testing. However it is an expensive test and a personal decision. I won’t go into more details as it’s been a very long road but at this point I am doing well. I would be happy to share more but only if you’d like. Take one day at a time and ask lots of questions and read as much as you can about TNBC. The resource center at Mayo was a big help in finding a lot of info for me on trials and studies. Wishing you the best…. keep a positive attitude and have a blessed holiday!

Jump to this post

I agree with syska @syska that even though genetic testing is expensive, it is helpful for your diagnosis and knowledge to share with relatives. Mine was covered by insurance. Check with your facility about charges and ask your insurance company about coverage.

I have 3 sisters and including myself 3 out 4 have been diagnosed with breast cancer, all caught very early. My sister and me both did genetic testing (10 years apart) and neither showed any genetic cause. Odd, but I think it is probably some genetic trait that has not been found yet. Or may be environmentally. May never know.

Laurie

REPLY
@roch

I am glad you reached out to Connect to get advice and support.

Every person treatment plan is different, and the most stressful time for me was not knowing what was going to happen next.

I went thru my diagnosis and treatment few years ago. I was Stage 2, tumor in one breast and two positive lymph nodes. My sister just got diagnosis last month and I am trying to help her through the process. She had a suspicious area found during mammogram, had lumpectomy last week and has appt with radiation next week.

My treatment order was different, an AI (aromatase inhibitor) pill prior to surgery as part of research project, surgery (lumpectomy) , chemo (IV), radiation and then back on AI again.

As someone else suggested, go in with prepared list of questions. I went to my sister's appointment with her at Mayo. We let the provider explain everything and at end reviewed our prepared questions to make sure all of our questions were answered.

Here is few questions you may consider:

1. Are there any additional test required. If you have not had an MRI of breast, ask if it would be helpful to make sure there are no other locations the mammogram may of missed.
2. Have the exciting test checked the lymph nodes?
3. Do they suggest a meeting with a genetic specialist?
4. The order of treatment varies between patients, ask your team what treatments are planned and why the specific order.

Our thoughts are with you,

Laurie

Jump to this post

Laurie, thank you so much for the advice and your story. Prayers for your sister too. We had already discussed the MRI and the radiologist already investigated the lymph nodes in my axilla. I have been told the lymph nodes look great and they did not feel it necessary to do the breast MRI. I have been told we are going to start with up to 5 months of Chemo before surgery. I’d be lying, if I said I wasn’t nervous about not having surgery right away. I do know that I am at the best place in the world and am trusting this is the correct path for me.

REPLY
@syska

Hi! My diagnosis is very similar to yours. Stage 1, grade 3 TNBC in 2015. Was caught early so decided on a lumpectomy. We didn’t think too much about genetic testing as I only knew of my Dad’s sister who had breast cancer twice at different times. Then I started contacting my Mom’s side of the family and found a lot of secondary BRCA2 involvement. Pancreatic cancer, ovarian cancer, prostate cancer….
So on my check up later we did the genetic testing and it came back BRCA2. I never had children or pregnancies and still had my ovaries and Fallopian tubes which never caused me any issues over the years but they had to go and that has started another long journey over the past 4. After all this I am a strong believer in genetic testing. However it is an expensive test and a personal decision. I won’t go into more details as it’s been a very long road but at this point I am doing well. I would be happy to share more but only if you’d like. Take one day at a time and ask lots of questions and read as much as you can about TNBC. The resource center at Mayo was a big help in finding a lot of info for me on trials and studies. Wishing you the best…. keep a positive attitude and have a blessed holiday!

Jump to this post

Thank you so much for your story. I did already meet with genetics and decided on the STAT panel; so, testing 9 genes. I did not realize about the secondary cancers, but I will try not to worry about that until I have to. Thank you!

REPLY
@astaingegerdm

@hkc9890 – It is very scary to hear the diagnosis- even though the surgeon greeted me after the biopsy saying- Congratulations! You have breast cancer- we can treat that!
I was diagnosed 28 years ago- invasive ductal, no lymph nodes, double negative- before they added the other marker.
I was working as a pediatrician then, but felt like a deer in headlights.
I had a mastectomy and chemo. Reconstruction too.
Chemo was tough for me, but I succeeded getting full dose each time. They check your CBC before each infusion.
For the 6 months of treatment, I worked 2 weeks, off 2 weeks.
I didn’t have any BRCA genes and a negative family history. However, recently my daughter went through genetic testing after iffy mammogram. She has a CHEK2 mutation that increases her risk of breast cancer as well as other cancers. I’m getting tested now myself. I have another daughter and a son and I would want them to know as well.
I agree that you should ask a lot of questions along the way.

Jump to this post

Thank you so much for your story. I am finding a trend of how important it is to do genetic testing.

REPLY
@hkc9890

Laurie, thank you so much for the advice and your story. Prayers for your sister too. We had already discussed the MRI and the radiologist already investigated the lymph nodes in my axilla. I have been told the lymph nodes look great and they did not feel it necessary to do the breast MRI. I have been told we are going to start with up to 5 months of Chemo before surgery. I’d be lying, if I said I wasn’t nervous about not having surgery right away. I do know that I am at the best place in the world and am trusting this is the correct path for me.

Jump to this post

Good news about lymph nodes. My understanding of chemo before surgery is that is can reduce size of tumor and thus surgery can be less invasive.

As I said earlier, mine was part of a Mayo research project. It did show that a cancer antigen KI-67 decreased during pre-surgery treatment.

Five months may seem like a long time, but you will be surprised at how fast it went.

I used the 6 months prior to my surgery to improve my health. I wanted to be in best shape I could be prior to surgery. I exercised more, ate better, etc… Chemo may effect those options. Everyone reacts from chemo differently. I had very little side effects.

Laurie

REPLY
@roch

Good news about lymph nodes. My understanding of chemo before surgery is that is can reduce size of tumor and thus surgery can be less invasive.

As I said earlier, mine was part of a Mayo research project. It did show that a cancer antigen KI-67 decreased during pre-surgery treatment.

Five months may seem like a long time, but you will be surprised at how fast it went.

I used the 6 months prior to my surgery to improve my health. I wanted to be in best shape I could be prior to surgery. I exercised more, ate better, etc… Chemo may effect those options. Everyone reacts from chemo differently. I had very little side effects.

Laurie

Jump to this post

@roch, @hkc9890
Unfortunately, for me the chemo did not affect my tumor size of the first tumor and I had horrific side effects from chemo. Luckily for me, I insisted on MRI breast whereupon a second lesion was noted in the same breast at a different site which turned out to be an aggressive and rare neuroendocrine cancer (these usually do not show up in breast, but rather in stomach or intestines). Had this not been performed, my outcome would be so very different. So if anyone ever has any doubts whatsoever, push for further evaluation.

REPLY

Make sure to ask ALL types of healing for you, including natureopath. Make sure you ask what you can expect. My onco just asked if I had any questions. Of course I didnt, I had never had cancer before. Ask her if she will still support you if you cannot handle side effects of the drug. Make sure she is ok woth you trying all options. Mine was not and walked, leaving me to go thru my dr, who knows nothing about breast cancer and keeps telling me to call thecancer center. You need to be in charge.

REPLY
@jeaniebean

Make sure to ask ALL types of healing for you, including natureopath. Make sure you ask what you can expect. My onco just asked if I had any questions. Of course I didnt, I had never had cancer before. Ask her if she will still support you if you cannot handle side effects of the drug. Make sure she is ok woth you trying all options. Mine was not and walked, leaving me to go thru my dr, who knows nothing about breast cancer and keeps telling me to call thecancer center. You need to be in charge.

Jump to this post

Thank you for the advice. I was not really thinking about naturopathic. That is awesome. I will definitely think about that. Thank you for sharing your story.

REPLY
@hkc9890

Thank you for the advice. I was not really thinking about naturopathic. That is awesome. I will definitely think about that. Thank you for sharing your story.

Jump to this post

It is simply another option!

REPLY
@roch

I agree with syska @syska that even though genetic testing is expensive, it is helpful for your diagnosis and knowledge to share with relatives. Mine was covered by insurance. Check with your facility about charges and ask your insurance company about coverage.

I have 3 sisters and including myself 3 out 4 have been diagnosed with breast cancer, all caught very early. My sister and me both did genetic testing (10 years apart) and neither showed any genetic cause. Odd, but I think it is probably some genetic trait that has not been found yet. Or may be environmentally. May never know.

Laurie

Jump to this post

@roch @syska @hkc9890
Hi, Laurie.
I had genetic testing for breast cancer, colorectal cancer, and ovarian cancer (as they share many similar genes), and it was paid for by my insurance. The results were negative. My oncologist is of the opinion that my breast cancer was caused by taking hormone replacement therapy when going through menopause which is likely, considering that my pathology report showed high levels of estrogen and progesterone.

REPLY

Hi all! I have found these sites very informative and thought I would share my story. Firstly I am from Calgary Alberta Canada. Back March 14th of this year I was diagnosed with invasive ductal cancer of the right breast. I was 5 months shy of my regular mammogram. Because of covid everything thereafter was done by phone. I was given my diagnoses over the phone. I had my preop with the surgeon over the phone and was booked for surgery 31 days after diagnosis. My preference would have been to have a bilateral, I was 70 at the time. Because elective surgery was cancelled because of covid that would have been elective so couldn’t do it. I entered the hospital alone and I met the surgeon and anesthetist 5 minutes before being wheeled into surgery. The tumour was 2 cm stage 1 grade 3 with no lymph node involvement. All this was once again given to me over the phone. I have never seen the surgeon since. Met with the oncologist face to face and determined that they wouldn’t take my age as the determining factor for the next steps. Because of my need to do research I found the oncotype testing. When meeting my oncologist it was me that suggested we do this test to determine the next steps. He agreed and 2 weeks later found out that my score was 51 which determined that I was at a high risk of recurrence and that chemo would benefit me.

I am now just about 3 1/2 months from chemo. I am on an AI and My symptoms so far have not been extreme but monitoring the changes as it seems everyday there is something new. From this site I now know I need to determine what my risk factor is if I don’t take it and there are options I have also just booked an oncologist psychologist appt. I have taken everything in stride up to now. Have not been angry never said why me and haven’t shed a tear. I liken this experience to training for a race and raced and crossed the finish line and then ask the question Now What! Not sure if any of this makes sense but I am feeling like there is isolation with this darned covid but there is also isolation in a cancer diagnosis. Thank you everyone for sharing and thank you for listening.
Oma

REPLY
Please sign in or register to post a reply.
  Request Appointment