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?

Hello, @hkc9890 and welcome to Mayo Clinic Connect.

I am sorry to hear of your recent diagnosis that came the day before Thanksgiving. I would like to invite some of our Members who post about their experience with breast cancer to respond to your questions. Please meet @trixie1313 and @roch. They can undoubtedly direct you to others who have had a similar diagnosis.

I admire your desire to learn as much as you can before you hear the medical team's recommendation. While we wait for others to respond to your post if you care to share more, how was your breast cancer found? Did you find it yourself during self-examination or was it found with a mammogram?

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@hkc9890
How many nodes were involved? Did they erode into the lymphatics? Just because you're a nurse, you are now in the "club" that no one wishes to join! Please start writing down questions on a notepad that you think of between now and then so you can be sure to ask all your questions as when we're with the oncologists, it can be a whir of emotions. And if you can take someone else in with you, they may remember something that you don't. I was ER/PR positive but her2neu negative so for me it was chemo and then lumpectomy. Because I was worried about the other breast and asked for an MR breast which they did and found a second lesion. If you have ANY concerns, ask about that if, for anything else, peace of mind. I'm so glad that I did. After that it was on for another surgery at which time we went for partial mastectomies. My surgical oncologist explained that even with full mastectomies, they cannot remove all tissue and that you can still get breast cancer. Her other reason was that women that have full mastectomies can have lifelong neurological pain due to cutting through nerves. Following my second surgery, I underwent 30 radiation treatments because of the erosion into the lymphatics. What I want to have you understand is that even through all of this, each day is a blessing. There may be days of pain, but that will mostly go away. Following all of that, I was placed on aromatase inhibitors and went through two before finding the third choice one was with the least side effects for me. It's okay to ask "why me" and take time to get used to the idea of having cancer, but after that – take the bull by the horns and move forward. We're all here for you and pulling for your best outcome. All the best to you…Trixie

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I was diagnosed in 2018 with DCIS left breast and invasive ductal in right (2 tumors). ER/PR positive HER neg. Started Arimdex a week after diagnosis. Helped shrink the tumors a little. Underwent bilateral mastectomies with placement of tissue expanders 3 months after diagnosis followed by 5 weeks of radiation. One positive node. All went pretty well. Returned to work as an RN two weeks after my surgery. I never missed a day of week as had my radiation during my lunch break. My reconstructive surgeon wanted me to recover for six months post radiation. One week before that surgery had a freak accident and broke about every bone in my right arm that required major surgery and 6 months of rehab to get the arm and hand functioning again. Finally had my breast reconstruction. Am about 10 months out of surgery and so far am doing relatively well. Not thrilled with the side effects of the A1 but take one day at a time. When diagnosed immediately signed up with Mayo and this terrific group! Learned a lot and their stories and knowledge have gotten me through it. Will be forever grateful I found them.

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@hkc9890
Welcome to the group! You always can depend on Trixie's advice, btw. My only thought is this: no matter how cool and calm you may feel as a health care professional, you may want to bring someone with you to the meeting who takes good notes and is not intimidated by asking questions, or, if you don't have someone like that to accompany you, get permission to record the session. They throw a lot at you all at once, and don't necessarily provide complete written information or in a useful format; and the people with whom you meet may not necessarily be able to answer your questions (or will say that "everything is explained in the folder" given to you… it will not be) but s/he/theywill expect you to sign reams of paper authorizing the treatment plan… the mind reels. If you were given any verbal information in advance, start doing your research now. That may help with your list of questions.

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@hopeful33250

Hello, @hkc9890 and welcome to Mayo Clinic Connect.

I am sorry to hear of your recent diagnosis that came the day before Thanksgiving. I would like to invite some of our Members who post about their experience with breast cancer to respond to your questions. Please meet @trixie1313 and @roch. They can undoubtedly direct you to others who have had a similar diagnosis.

I admire your desire to learn as much as you can before you hear the medical team's recommendation. While we wait for others to respond to your post if you care to share more, how was your breast cancer found? Did you find it yourself during self-examination or was it found with a mammogram?

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Wow! Did not expect such quick responses. I went for my annual screening mammogram and it was found with that. Due to the pandemic, it had been 22 months since my previous mammogram.

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@trixie1313

@hkc9890
How many nodes were involved? Did they erode into the lymphatics? Just because you're a nurse, you are now in the "club" that no one wishes to join! Please start writing down questions on a notepad that you think of between now and then so you can be sure to ask all your questions as when we're with the oncologists, it can be a whir of emotions. And if you can take someone else in with you, they may remember something that you don't. I was ER/PR positive but her2neu negative so for me it was chemo and then lumpectomy. Because I was worried about the other breast and asked for an MR breast which they did and found a second lesion. If you have ANY concerns, ask about that if, for anything else, peace of mind. I'm so glad that I did. After that it was on for another surgery at which time we went for partial mastectomies. My surgical oncologist explained that even with full mastectomies, they cannot remove all tissue and that you can still get breast cancer. Her other reason was that women that have full mastectomies can have lifelong neurological pain due to cutting through nerves. Following my second surgery, I underwent 30 radiation treatments because of the erosion into the lymphatics. What I want to have you understand is that even through all of this, each day is a blessing. There may be days of pain, but that will mostly go away. Following all of that, I was placed on aromatase inhibitors and went through two before finding the third choice one was with the least side effects for me. It's okay to ask "why me" and take time to get used to the idea of having cancer, but after that – take the bull by the horns and move forward. We're all here for you and pulling for your best outcome. All the best to you…Trixie

Jump to this post

I have only had biopsy of the mass at this point. I still have to meet with the oncologist, surgeon, and radiation MD. My understanding is they will start with Chemo up to 5 months before surgery. I do not know anything about lymph node or lymphatic. They are calling it Stage 2 and grade 3. Thank you for the advice and encouragement.

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@dottieh

I was diagnosed in 2018 with DCIS left breast and invasive ductal in right (2 tumors). ER/PR positive HER neg. Started Arimdex a week after diagnosis. Helped shrink the tumors a little. Underwent bilateral mastectomies with placement of tissue expanders 3 months after diagnosis followed by 5 weeks of radiation. One positive node. All went pretty well. Returned to work as an RN two weeks after my surgery. I never missed a day of week as had my radiation during my lunch break. My reconstructive surgeon wanted me to recover for six months post radiation. One week before that surgery had a freak accident and broke about every bone in my right arm that required major surgery and 6 months of rehab to get the arm and hand functioning again. Finally had my breast reconstruction. Am about 10 months out of surgery and so far am doing relatively well. Not thrilled with the side effects of the A1 but take one day at a time. When diagnosed immediately signed up with Mayo and this terrific group! Learned a lot and their stories and knowledge have gotten me through it. Will be forever grateful I found them.

Jump to this post

Thank you for sharing your story. The cancer wasn’t enough, you had to throw in the accident for good measure? Just kidding, I hope you continue to improve and appreciate the information.

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@hkc9890

I have only had biopsy of the mass at this point. I still have to meet with the oncologist, surgeon, and radiation MD. My understanding is they will start with Chemo up to 5 months before surgery. I do not know anything about lymph node or lymphatic. They are calling it Stage 2 and grade 3. Thank you for the advice and encouragement.

Jump to this post

@hkc9890
That's good news, somewhat early stage. You have a lot to absorb so just take one day at a time. You've got this!

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@elizm

@hkc9890
Welcome to the group! You always can depend on Trixie's advice, btw. My only thought is this: no matter how cool and calm you may feel as a health care professional, you may want to bring someone with you to the meeting who takes good notes and is not intimidated by asking questions, or, if you don't have someone like that to accompany you, get permission to record the session. They throw a lot at you all at once, and don't necessarily provide complete written information or in a useful format; and the people with whom you meet may not necessarily be able to answer your questions (or will say that "everything is explained in the folder" given to you… it will not be) but s/he/theywill expect you to sign reams of paper authorizing the treatment plan… the mind reels. If you were given any verbal information in advance, start doing your research now. That may help with your list of questions.

Jump to this post

Thank you so much for the advice. I will definitely have someone with me and take notes.

REPLY
@dottieh

I was diagnosed in 2018 with DCIS left breast and invasive ductal in right (2 tumors). ER/PR positive HER neg. Started Arimdex a week after diagnosis. Helped shrink the tumors a little. Underwent bilateral mastectomies with placement of tissue expanders 3 months after diagnosis followed by 5 weeks of radiation. One positive node. All went pretty well. Returned to work as an RN two weeks after my surgery. I never missed a day of week as had my radiation during my lunch break. My reconstructive surgeon wanted me to recover for six months post radiation. One week before that surgery had a freak accident and broke about every bone in my right arm that required major surgery and 6 months of rehab to get the arm and hand functioning again. Finally had my breast reconstruction. Am about 10 months out of surgery and so far am doing relatively well. Not thrilled with the side effects of the A1 but take one day at a time. When diagnosed immediately signed up with Mayo and this terrific group! Learned a lot and their stories and knowledge have gotten me through it. Will be forever grateful I found them.

Jump to this post

@dottieh
You have been through so much and are a warrior woman….bless you!

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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

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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!

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