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New Primary in other breast 9 years Later

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    Posted: Mar 25 2018 at 10:18am
Hello everyone
I thought I would start a new topic here since my new diagnosis last month. I do not want to scare any women, or families, newly diagnosed by posting too much of this kind of stuff other places on the forum.
Some old time friends here already know the detail of my new diagnosis but I will repeat what I know so far.
It has been 9 years, almost to the day , since my first diagnosis of TN. I have been a patient at Vanderbilt in Nashville, TN since 2012 for followup care. We moved from South Florida to North Carolina then and i decided to go to Vanderbilt because my husbands family lives there.
During my annual exam in February the mammogram showed micro calcifications of about 18 mm. Biopsy the next day, phone a few days later confirming malignant and TN again. Mastectomy last week and chemo to start soon although i do not have an exact date yet. My MRI was reviewed by 2 radiologist teams, one at Vanderbilt and the other at Mayo in Jacksonville, FL. (My cousin is a radiologist there). She recommended mastectomy. Thank goodness she did because I received my final pathology report Friday and they also found a 4 CM DCIS. It would have been awful to have only done a lumpectomy and still had this other, larger place, unseen by the MRI or any of the doctors!

I love this site and actively participated for many years. Here I am again needing support as I travel this way again.

Love to you all,

Blair (cheeks)

Edited by cheeks - Mar 25 2018 at 10:23am
Lump found 11/08
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Mar 25 2018 at 12:48pm
Blair,

Sweet friend I'm heartbroken you are dealing with a new diagnosis.  You know we are here to support you as you face this beast again.  Sometimes you have to go with your gut and make those important decisions.  Having the mastectomy was the right choice for you and I'm so glad you made that decision.  

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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Post Options Post Options   Thanks (0) Thanks(0)   Quote cheeks Quote  Post ReplyReply Direct Link To This Post Posted: Mar 25 2018 at 5:55pm
Thank you Donna, for being a friend, a sounding board, a question answerer, for so many years for me.

I appreciate your friendship and everything you do.

Love,

Blair
Lump found 11/08
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Mar 25 2018 at 8:56pm
You've got this Blair! I'm proof that you'll pop out the other end of this nightmare just fine! I had my check up on Friday with my oncologist, my blood work is pristine, all seems dandy, she's very pleased. I think they should put us in a study - what's with the 9 year recurrence? Hmmmm...
What chemo are you going to do?
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cheeks Quote  Post ReplyReply Direct Link To This Post Posted: Mar 25 2018 at 10:19pm
Hi Kelly,
Yes, I agree, they should study us for sure!
Before surgery she said, if nodes are okay I will do Taxatere and Cytoxin again. No adrimycin (sp) had lifetime last time. If nodes were not clear it would have been Taxol again which she hated to use because of the neuropathy but she would if she had to and Carboplantin. I do not know if this unseen DCIS will change that plan. Probably not. I would like them to see if it is TN too, just in case, but my luck it is also TN!
Who knows we might be distantly related   
I feel good about things and really think i will be okay. 9 years NED has me feeling pretty positive.

I will keep you up to date after my appointment on Wednesday

Thanks for the encouragement!

Blair

Edited by cheeks - Mar 25 2018 at 10:22pm
Lump found 11/08
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.
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cheeks View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cheeks Quote  Post ReplyReply Direct Link To This Post Posted: Mar 30 2018 at 1:32pm
I had a good visit with my surgeon Wednesday. Drain was not quite ready to come out but i went back today and they removed it!
I will See my oncologist Tuesday afternoon.

Love, Blair
Lump found 11/08
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Mar 30 2018 at 6:26pm
Yay! I hate those drains with the heat of a 1000 suns. The doctors treated me like a unicorn, but they did say that having this brand new cancer years later is better than having a recurrence of the same cancer....so we've got that! I'll take you as a relative, I've got no female blood relations. My brother traced us back on both sides and we are Very American - back to 1740 on mom's side and 1770 on dads. My husbands family all just did the genetic thing and he has quite a bit of Neanderthal in him. I don't think they had the mutations, the Neanderthals? :)
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cheeks Quote  Post ReplyReply Direct Link To This Post Posted: Apr 10 2018 at 10:56pm
Hi Kelly,

It has been interesting and fun doing the genetic genealogy. My mothers mom was adopted so a mystery to solve.

We have been home since last Wednesday evening. Chemo starts this coming Tuesday, April 17th so we will head back to Nashville on Monday.

Staying with family didn't work at all so we had our RV brought over to a nearby place on a lake near Nashville. It was a lot of fun and relaxing. That's is what we will do from now on.

Mother in law, who by the way, had breast cancer and both breasts removed in 1978, the year we married was extremely difficult to stay with. The day after I had surgery my husband wanted to wash my hair in the kitchen sink before helping me get dressed for the day... it was a no go... why couldn't I wash it in the tub, the bathroom sink,...SO, she made me an appointment at her hairdresser for a wash and blow dry and had to accompany us there. I've known this woman for 42 years, she's always been difficult but this and some other things were just more than I could tolerate right now. We don't need the extra stress of trying to please her even though she invited us to stay with her.

I'm looking forward to getting this ball rolling but have felt a little emotional today. All things considered I'm happy and have a WONDERFUL supportive husband by my side.

Hope all is well with everyone.

Love,

Blair


Edited by cheeks - Apr 10 2018 at 10:58pm
Lump found 11/08
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Apr 11 2018 at 2:05am
I swear we are twins, wonderful supportive husband - check! Difficult demanding mother in law - triple check! I cannot think of many things worse than staying at her house while doing chemo A lil spot by the lake in springtime sounds lovely! What chemo are you doing again? I'm sorry I cannot remember. I hope the genetic testing comes back clear. Enjoy this upcoming spring weekend, revel in it if you can. Avoid the MIL, you deserve this weekend to do whatever trips your trigger.
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cheeks Quote  Post ReplyReply Direct Link To This Post Posted: Apr 11 2018 at 11:30am
Definitely avoiding the MIL!
I am having Taxatere and Cytoxin (again). I am hoping she might change the Cytoxin. I blame it for the Interstitial Cystitis i have suffered ever since, but my previous oncologist did not think so. Maybe a coincidence

Blair

Edited by cheeks - Apr 11 2018 at 11:31am
Lump found 11/08
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Apr 11 2018 at 12:57pm
Have they considered Carboplatin? My local doc thought I should do Carboplatin and taxotere, my MDA 2nd opinion doc said why not taxol? It worked well for you last time. So I went with that and got full response. It made me quite sick but I don't regret it. Most folks here seem to tolerate carb quite well, I had an exceptionally bad response to it, but I made it thru with no delays and it worked.
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Apr 11 2018 at 12:58pm
I didn't have to do Neulasta shots at all, I was happy about that.
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cheeks Quote  Post ReplyReply Direct Link To This Post Posted: Apr 11 2018 at 1:43pm
Kelly,

If my nodes were positive she would have used Taxol again but really did not want to with a greater risk of neuropathy. I am already at risk due to diabetes and 12 weekly Taxol the first time.
She also would have used Carbo but feels without positive nodes that Cytoxin would be good again.
My mom had Taxol and Carbo for her late Stage 3 Ovaian cancer in 2011. She had an excellent response and is still alive and well.
I have sent her a message about the Cytoxin so i will just have to wait and see what she has to say... i forgot to mention my concern at our meeting
Lump found 11/08
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Apr 17 2018 at 10:18am
You are on my mind today Sister Blair, sending you calming and peaceful thoughts on your first chemo day today. I had the weirdest deja vu going back into chemo, but also found it less scary once I was an "old hand" at the whole process. You're one step closer to this being behind you! Let us know how it goes, and how you're feeling this week
Kelly
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cheeks Quote  Post ReplyReply Direct Link To This Post Posted: Apr 17 2018 at 11:25am
Thank you Kelly.
Sitting here waiting and about to get started.
Lump found 11/08
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Apr 17 2018 at 7:46pm
Blair,

Hope your session went well and you're resting comfortably.

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 cheeks Quote  Post ReplyReply Direct Link To This Post Posted: Apr 19 2018 at 4:57pm
Hi Donna and Kelly,

Chemo went well, no reactions, no nausea. On body Neulasta was interesting and so far, no bone pain. I do need to remember to pack Imodium and A&D ointment Same as last time, chemo does not seem to constipate me.
I have just been very tired and sleepy. A little irritable and legs were swollen that first night. They are giving me lots of extra fluids during chemo to help flush it out so it does not make my bladder worse than it already is from last time. So far, so good. We are driving home at the moment.
My next chemo is May 8th.

Love to all,

Blair
Lump found 11/08
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cheeks Quote  Post ReplyReply Direct Link To This Post Posted: Apr 22 2018 at 5:37pm
So a new experience this time. Thrush. Started Friday evening noticing my tongue was really sore even though I had been swishing with baking soda and salt.Yesterday I noticed my tongue was white so I called Vanderbilt. They told me to go to urgent care...They close at 4 on Saturday so we went to the ER. After 4 hours, bloodwork etc. They gave me an oral lozenge because any pharmacies within an hour of us were closed and sent me on my way. 30 minutes later I am throwing up and terrible diarrhea! Apparently the lozenge can do that to some people.
Today We got an oral swish and spit that has done much better. Thank goodness, I hate seeing my husband cleaning up my throw up and poop!

Lump found 11/08
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Apr 22 2018 at 8:09pm
They gave you a med for thrush, right after chemo, that causes diarrhea and vomiting????? Good Lord!!
I swished my mouth with Biotene several times a day through chemo regimens and never had a mouth sore. It helped me with the icky chemo taste as well. I ordered it on Amazon this last time.
I'd send a message to your oncologist about this ordeal, see if she has suggestions on how to prepare for after hours care going forward. It's almost a given that stuff is going to happen, and usually not M-F 9am-5pm!
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cheeks Quote  Post ReplyReply Direct Link To This Post Posted: Apr 22 2018 at 8:45pm
Yes they did !
I've been rinsing religiously like last time with Biotene and salt\ baking soda water and still got thrush.
I've sent a message to my nurse. I followed what they told me about calling the clinic after hours. A doctor called me back and told me to go to urgent care here. Urgent care closed right before we got down the mountain at 4 pm. So we had to go to the ER.
When we talked to The ER again they finally admitted this could happen with some people. This doctor on shift The second time was so arrogant and such a sh*thead! It is just The chemo, blah, blah. Finally admitted it was The lozenge.
The streets roll up at 6 around here so anything else was an hour away.
I think if this happens again I'll call one of my neighbors. They are all nurses, retired chemo nurse, life flight and hospice nurses.

Lump found 11/08
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.
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