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New Diagnosis, researching options

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tjpecknh View Drop Down
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    Posted: Dec 18 2020 at 8:27am
Hi. I was diagnosed with TNBC just a couple weeks ago though routine mammogram. I am healthy and 53. The tumor is about 5-7mm and there does not seem to be any spread to lymph nodes or other areas of either breast in a recent MRI. 

I met with a surgeon Wednesday and then a plastic surgeon. I am awaiting genetic test results that I hope to have by 12/24 and will make my treatment decision easier as if I have a genetic predisposition I will get a double mastectomy with immediate reconstruction. The struggle I have is in the options without the genetics. 

My maternal grandmother had BC in 1946 at the age of 41 so of course I have no idea what that was but she lived to be 96 and very healthy.

My mother had DCIS stage 0 at 70 (five years ago) and had lumpectomy and radiation and is doing fine but that's a very different cancer.

My husband passed away from anal cancer 18 months ago and while I recognize that area of radiation would have very different issues it had negative outcomes. I worry about having radiation right over my heart. I am a marathon swimming so all treatment options concern me with my ability to swim for hours (although read about Sarah Thomas a TNBC patient who recently broke the world record by swimming across the English Channel 4 times after treatment and reconstruction).

So, if I don't have the genetics that indicate I am at more risk do I still get a double mastectomy and reconstruction? I've read many articles and papers someone posted on this topic and it really has me waffling on the decision I thought I would make either way. I was going to meet with a radiologist to ask some questions but cancelled that for a multitude of reason, the least of which being that my mother went to her and the DR (although very good at what she does) appears to be on the spectrum and wasn't able to give my mother the information she needed to make a decision so she had to go elsewhere for a second opinion. I do have the name of another radiologist but if I don't have the genes I don't need to talk to a radiologist (I also would not have had the results when the original appointment was scheduled).

I hope I'm not all over the map here. My brain sure is. Any insight with these options. How much time would I be out of commission with a double mastectomy and reconstruction. I work remotely and my day job is easy to take time off but I also teach college courses at night and can't determine if I would be able to do that this spring or not. 

Thanks for reading and any insight would be very helpful. 

Terri
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kirby View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Dec 18 2020 at 9:01am
Terri, The 24th isn't that far off to wait if you feel you need that answer. Unfortunately so many of the decisions are such a personal matter along with how comfortable you are. What would your tx be without the genetic testing? 

I had tx 20 years ago. I didn't have genetic testing until 2 years later. It wasn't offered beforehand at that point. I was 45 years old. My mother had just passed at age 64 from ovarian cancer. I had basic genetic testing and it was negative. I had extensive genetic testing thru the King study in maybe 2010. It was negative for everything. My sister ended up being dx with er+ breast cancer in 2012. No one else in my extended family had ever been dx with either breast or ovarian cancer. 

I am a runner. Not far, but do run daily, 2-5 miles. At the time also, Dr's couldn't give advice as to what the effects would be for running or working out. I am missing the bottom part of my lung due to radiation. Dr said it was inconsequential. I was able to run after chemo but stopped towards the end of radiation to resume once it was over. 

My run partner was dx 2 years ago with stage 2 her2 so endured quite a bit more of treatment. Certainly far more than I had.[ my tx was much less than what is given today for TN]

 She chose lumpectomy for the convenience of recovery. Her first dr had suggested mastectomy but she felt like he chose that more for his convenience. She ran all thru tx except for the 3-5 days of chemo. 

I was still raising children so didn't have energy to run when I went thru chemo. My run partner, in her mid 50's at dx, was finished raising kids so perhaps had more energy. 

Your cancer is still very small. 

I believe Donna 123 answered someone else's question within the last few months about the outcome difference between mastectomy and lumpectomy. I am sure someone with more technical knowledge will weigh in. 

Both my run partner and myself worked all thru tx. 

I don't know if this answered any of your questions. I hope it helps. 
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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tjpecknh View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tjpecknh Quote  Post ReplyReply Direct Link To This Post Posted: Dec 18 2020 at 5:39pm
Thanks Kirby, 

I know everyone will come up with a different decision and it does help to read others experiences and thought process. I believe if I test positive I will have a double mastectomy with immediate reconstruction. It's the decisions I'd make if I don't have the gene that I'm stuck on. If I was sure I'd make the same decision either way I could schedule surgery now and not wait to get results then decide. 

Your comments about your lung are scary! This tumor, although very small, is right over my heart so that freaks me out. I have an appointment with a radiologist but not until 1/7. If she isn't able to help my concerns about my heart then I'd go with more drastic surgery and really sooner is better if I need to take all this recovery time. 

My surgeon feels waiting for those results is a good idea too. It was reading some of the materials posted here about radiation and lumpectomy having some better results that had me questioning things more.

Thanks for your feedback.

Terri
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Post Options Post Options   Thanks (0) Thanks(0)   Quote snugltz Quote  Post ReplyReply Direct Link To This Post Posted: Dec 19 2020 at 1:36am
tjpecknh

my cancer was also right over my heart.  And I have several fairly serious heart issues. Mitral valvue prolapse, atrial fib and atrial flutter.  Im on two different heart meds.I had a lumpectomy only.  This was over 10 years ago and I know things have changed.  But I had 2 months every day of radiation.  They were very careful with the radiation.  But the doctor would not allow me to have the red devil part of the chemo.  I have forgotten what it is called.  It used to be one of three chemos they used.  
1 cm, 0/2 neg nodes, lumpectomy 6/16/10, cytoxin/taxotere 4x every three weeks, rad start 11/8 33X
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Dec 19 2020 at 7:26pm
Dear Terri,

I would suggest you have a discussion with your Breast Medical Oncologist (BMO) after you have your testing results. Hopefully, the BMO is an expert in TNBC and whatever genetic mutation you may have. Want to make sure all factors are considered before you do the surgery. 

Good luck to you!!!

warmly,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (1) Thanks(1)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Dec 19 2020 at 8:15pm
Terri, I am sorry my comments on my lung seemed scary. I didn't mean for it to come off that way. The reason I brought it up is that perhaps it truly has been inconsequential.....I haven't missed it a bit and certainly can run and exercise like I did before.
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Penny Quote  Post ReplyReply Direct Link To This Post Posted: Dec 20 2020 at 6:28pm
Hi Terri,

I had about the same size tumor and right over my heart as well.  I went back and forth on mastectomy's versus lumpectomy.  I decided on the lumpectomy with radiation.  I did have the genetic testing after my lumpectomy figuring I can always go back in and have the double mastectomy if needed.  The testing came out negative.  I am four years out from diagnosis and just saw my medical oncologist for my annual check up.  All clear.  

I am glad I took the conservative approach.  I am an athlete as well and worried about the radiation directly over my heart muscle.  They are very very careful on the beam that shoots across the breast on the left side.  They have very strict protocol on breathing and hold techniques to make sure the RAD strike is accurate.  I have had no issues since my treatment ended. 

I read your post and know your mind is spinning right now.  There are a lot of decisions to make but know you don't have to rush to make them.  I felt panicked that I had to "hurry through every decision".  You don't.  

Find your team that you trust and work through the process.  For me, once I began treatment, I relaxed a bit knowing I was walking down the path.  Day by day.  This forum kept me really balanced.  I check this site every week to offer encouragement or just read about other survivors and how they are all doing.  We are all in this together. 

Here's hoping you get the answers you need this week so you can take your first step.  We are all here for you.  I like the saying "Let your Faith be stronger than your fear".  

Penny  

DX IDC, TNBC 12/7/16 (age 55), Stage 1a Grade 2, .6cm, 0/1 nodes, Lumpectomy & node dissection 12/22/16, BRCA1&2 negative 1/23/17 Chemo TC. Chemo completed 3/28/17. 30 RADs completed 6/6/17.

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Post Options Post Options   Thanks (1) Thanks(1)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Dec 21 2020 at 7:57am
Hi Terri,

Hope you get your genetic test results this week so it will help you make your surgery decision.  Without the genetic factor, many times it comes down to a personal choice.  I know you are concerned about radiation.  I had a bilateral mastectomy 11 years ago with implants placed under the pectoral muscle.  I don't know if this is still the reconstruction practice or if the plastic surgeon has other options.  I still don't care for the feel of the implants under the muscle when you stretch or try to exercise.  I used to be able to throw a softball very far.  Since surgery, the strength in my arms are not the same.  I exercise and lift weights but don't have the same strength, range of motion as before surgery.  I'd ask your surgeon how mastectomy surgery will affect your swimming vs lumpectomy/radiation.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote tjpecknh Quote  Post ReplyReply Direct Link To This Post Posted: Dec 27 2020 at 8:34am
This is very helpful. Thank you! In addition to these questions I started wondering why no on his mentioning chemo. The surgeon said if there was cancer in the lymph node then I could do chemo but not if there wasn't. I am beginning to wonder if his assumptions are based on breast cancer as a whole and not specifically TNBC. Don't get me wrong, I'd LOVE to skip chemo but not sure that's called for here. As  result I have an appointment with a medical oncologist later this week at the same hospital I am currently at and a second option at Dana Faber a week later. Once I do all of this I will make my final decisions. I should hear on the gene tomorrow. I now think I may go lumpectomy and radiation if I do not have the gene and see when/how/if chemo plays into that whole thing. Meanwhile I have a "side job" as a college professor. I actually teach 12 credits and while 3 are formally online the other 9, due to Covid can be all online but they are real time. I need to have a better sense of my treatment plan so I can determine if I should sign my contract for the semester or not. It's a lot of money and not too hard on the work end as I teach so much of this course so I think a lumpectomy and radiation wouldn't hold me back a mastectomy and chemo would.   

YUP, brain is spinning.

Thanks for your insight and feedback.

Terri
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Dec 27 2020 at 11:00am
Dear Terri,

My basic take on things is that you should try to get your care at a top cancer center, if economically feasible. 

Dana Farber is one of the country's leading cancer centers. I am glad you will be going there to get a second opinion. I would also ask the Dana Farber medical oncologist for a referral to a radiation oncologist at Dana Farber and a Breast Surgical Oncologist there as well. The location of your tumor makes radiation therapy challenging and you should talk with a radiation oncologist expert, in my unprofessional opinion.

Also, I would ask Dana Farber for a referral to one of their certified genetic counselors. 16 years ago when my daughter was dx with TNBC she had genetic testing and the tests, those days, focused, solely on the BRCA mutation. Many other deleterious mutations have been discovered in the last decade and hopefully your testing includes those genes?

Good luck regarding your genetic testing results. Again, please try to speak to a Certified Genetic Counselor at Dana Farber about your results if you can get into see one quickly.

If a quick consult is not possible I work closely with a Certified Genetic Counselor in Chicago; he can do a remote consult (cost $250...may or may not be covered by insurance) and he can help you understand the results. Hopefully, he is not on vacation.

The other resource that might be important is a cancer legal rights attorney who founded a non-profit that may be able to help you regarding employment issues, There are no charges to talk with her and I could try to arrange that. There may be some way you can get a leave of absence for the upcoming term and be able to go back to your job post-treatment. My mother worked full-time after her mastectomy and during radiation therapy. It was a herculean effort on her part. You may be right that you can do a lumpectomy and 5.5 weeks of radiation therapy but it will be an ordeal in my opinion. 
The radiation therapy is normally very fatiguing and the fatigue which seem to be cumulative, often, doesn't stop when your sessions stop. The therapy often causes fatigue for several months after you complete it as it is still actively working to kill the cancer cells.

If you are up for it I would be happy to do a Zoom call with you and explain to you how I might be useful to you. There will be no charges from SAGE Patient Advocates or myself, personally, but I am not a medical professional, so I will not give you medical advice. Hopefully, I can be a good resource for you information-wise.

Please send me a PM with your contact information. I will send you my phone number.
Alternatively you can write to me at contact@sagepatientadvocates.info 

Good luck with everything. We are all rooting for you.

warmly,

Steve







Edited by SagePatientAdvocates - Dec 27 2020 at 11:01am
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (1) Thanks(1)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Dec 27 2020 at 12:30pm
Hi Terri,

So glad you are getting another opinion at Dana Farber.  It's always a good idea to get a couple of opinions from different facilities, especially if one is part of the NCCN network. 

There is a grey area for chemo when the tumor is very small.  Usually the cutoff is 0.5 cm or less and based on risk criteria.  Please take a look at page 54, Guide #11 of the NCCN Guidelines for patients.  In fact, you may want to read through the entire document as it is very informative for newly diagnosed patients.


Donna


DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Chessie Quote  Post ReplyReply Direct Link To This Post Posted: Dec 27 2020 at 5:48pm
Thank you, Donna, for posting the Guideline document.  
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Dec 27 2020 at 6:15pm
Dear Donna,

I second the emotion.

Thank you for being you,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mom&grandma Quote  Post ReplyReply Direct Link To This Post Posted: Jan 04 2021 at 4:41pm
hi Donna, 

I am so happy to see you r still on this site helping people. You Steve and a few others were so helpful when my daughter started on her TNBC journey. You helped her in 2009-2010.

Thank you again!
Bonnie, mom of Heather, age 32, Dx on 9/1/09 TN IDC Stage 1, 1.4 c, lumpectomy, 10/8/09, DD AC & T, 3/9/10 bilateral mastectomy and immediate reconstruction, BRCA 1/2-
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jan 04 2021 at 6:04pm
Dear Bonnie,

Wishing you and your loved ones a Happy New Year.

Sooooo nice to hear from you.

Be well/safe.

warmly,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 05 2021 at 7:55am
Hi Bonnie,

So good to hear from you!  Hope you and Heather are doing well.

Hugs,
Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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