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Recurrence for the third time

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Soorya View Drop Down
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    Posted: Jun 11 2018 at 12:25pm
Hi All
This is e again with recurrence again

I completed my chemo on 27 Th of April.On 16th of May i noticed small lump near my mastectomy sight again.My ONC wanted to wait for 1 month.The size didn't change, but new lumps started to appear and seems to travel to other breast.
My surgeon today confirmed that my cancer returned and moved to another breast.

Now i am completely broken.I dont know what to do.My chemo is not working and i am getting this third time within 2 years

Any advice or examples like this.

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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: Jun 11 2018 at 6:47pm
Soorya,

I'm so sorry you are dealing with this again.  I'm not saying it could be, but you should rule out that it's not inflammatory breast cancer.  Here's a link to the thread/forum discussing this disease. 




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 gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 11 2018 at 9:02pm
My wife had cancer in her left breast in 2008, then she had (2) lumpectomies, it was Stage 2B with "lobular"

Then in 2016 she got another cancer in her other breast Stage 3A, metaplastic with squamous features.

She had a single masectomy in 2016, her Mom had bc (in her 70's) but since she has "dense breast tissue" this is the reason Kaiser missed her original diagnosis.

She is now under the care of Scripps Moore's Cancer Center where she is seeing Dr. Kurzrock, and they have done lots of genetic tests on her tissues after surgery, and found a mutation, a gene-mutation, for which they have an FDA-approved drug if she has another recurrance, so the point of my long post is maybe it's prudent to have a dbl-masectomy if the family history (my wife's does) and first cancer was "lobular" which is a "sneeky type of cell reproduction"

wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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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: Jun 12 2018 at 7:48am
Soorya,

Can you get a consult with Dr. Massimo Cristofanilli (Chicago, Illinois)?  He used to be at MD Anderson.


Other NCCN network locations:


Another thought - try contacting Steve via pm (sagepatientadvocates).  




Edited by 123Donna - Jun 12 2018 at 7:52am
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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Soorya View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Soorya Quote  Post ReplyReply Direct Link To This Post Posted: Jun 12 2018 at 10:27am
Hi Donna

Thanks for the info

My insurance is local to Ohio

Not sure if they will cover outside Ohio for second opinion

Any advice on this

Thanks

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Kellyless View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Jun 13 2018 at 12:25am
I'm so very sorry, I can imagine your terror and anxiety. I too thought what Donna thought - get checked for inflammatory bc. It is always misdiagnosed, so get pushy about it with your doctors.
Are you going to the Cleveland Clinic? They're a top rated Ohio facility that does a lot of TNBC research. I know I sound like a broken record, but you need multiple opinions for sure. It's especially important with us weird recurrence cases, since there's nothing textbook about our situations.
What can we do for you?
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 parrynd1 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 13 2018 at 7:43pm
If you are looking for a second opinion MD Anderson can help without having to be there in person for an appointment. I believe it is at no cost to you, but I think they need your doctor/treatment facility to send copies of your imaging and pathology to be better able to help/advise.

https://www.mdanderson.org/for-physicians/refer-a-patient/second-opinion-pathology.html
Dx TN IDC 9/016 Age 28, Stage 3c, Grade 3, 4.5cm, .7cm, 1/5 Nodes, BRCA -, KI-67 >90%, 6/6 I-Spy 2, 4/4 rounds DD A/C, Lumpectomy w/reduction, 3 nodes removed, weekly Taxol/Carb1/12
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 15 2018 at 12:04pm
Soorya,

I believe to rule out IBC, they have to do a punch test biopsy.  If you can't get a second opinion due to insurance issues, maybe ask your oncologist for this type of biopsy.  Like Kellyless said, we've seen so many women on this site who were not properly diagnosed with TN IBC until much later and after several recurrences.  

Another thought - try contacting Terry Arnold.  She's an 11 year Triple Negative IBC survivor and started a foundation to help women get the proper treatment.  She could guide you on how to get the correct testing to rule out IBC.  If you can't reach her, let me know.  I'm friends with her on FB.

Founder of The IBC Network Foundation and IBC Survivor

Terry Lynn Arnold was diagnosed with triple negative inflammatory breast cancer in her right breast in August 2007 and a left triple negative contralateral tumor soon after. She had six months of chemotherapy, a double mastectomy and daily radiation treatment for six weeks. The term remission is not applied to IBC patients, but she loves the term “no evidence of disease” (NED)  that is listed next to her name in her medical chart since she completed treatment in June 2008. At the time of her diagnoses she was shocked at how little information was available regarding IBC, and even more shocked at the lack of research and education for this orphaned form of breast cancer first written about in the 1800’s.

https://www.theibcnetwork.org/contact-the-ibc-network-foundation/


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 Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Jun 15 2018 at 5:39pm
I'm unclear on what you're saying the surgeon has suggested - but want to be sure he's not saying radiation first and then surgery on the radiated site? Having surgery on radiated tissue is a minefield of healing issues. I went thru hell when I had my mastectomy on the radiated side, which I now know is not uncommon.
I agree with Donna on getting the IBC biopsy ASAP. Time is critical with that disease, perhaps you could get Dr. Traina to agree to doing that when you see her? I would also be looking for a second opinion in addition to Dr. Traina. Your situation is unusual, you want as many educated opinions as you can get, as quickly as possible.
Having your pathology specimens redone at another facility is a great idea as well. Thats awesome that you can have MDA do that without having to make the trip to Houston. I had that done both times, it gave me great peace of mind! it only took a week to have them transferred between facilities and get them redone there.
Have they redone scans on you lately? I'd think a new round of tests, CAT, MRI, PET, bone - whatever you can get done. Since the dye didnt work I'd want testing some to see what axillary lymph nodes you have left, as well as the nodes under your breast bone... What are they called? The ones Donna had a recurrence in. They checked mine with the dye to make sure my cancerous breast didn't route to them. I even signed a waver before surgery authorizing a biopsy of them if they did.
I know this is a LOT, an overwhelming LOT, but your situation is unusual, your disease has acted unusually so I think doing everything you can now before you make these decisions is important. Just doing Xeloda for 6 months after what's happened feels..... I would want at least two other opinions before going that route.
Hang in there! If you have anxiety issues or sleeping issues talk to your doctor about it. Depression as well, don't let these treatable - and common! - problems affect your health while you are going thru this very, very difficult time.
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: Jun 15 2018 at 5:43pm
I'm unclear on what you're saying the surgeon has suggested - but want to be sure he's not saying radiation first and then surgery on the radiated site? Having surgery on radiated tissue is a minefield of healing issues. I went thru hell when I had my mastectomy on the radiated side, which I now know is not uncommon.
I agree with Donna on getting the IBC biopsy ASAP. Time is critical with that disease, perhaps you could get Dr. Traina to agree to doing that when you see her? I would also be looking for a second opinion in addition to Dr. Traina. Your situation is unusual, you want as many educated opinions as you can get, as quickly as possible.
Having your pathology specimens redone at another facility is a great idea as well. Thats awesome that you can have MDA do that without having to make the trip to Houston. I had that done both times, it gave me great peace of mind! it only took a week to have them transferred between facilities and get them redone there.
Have they redone scans on you lately? I'd think a new round of tests, CAT, MRI, PET, bone, ultrasound - whatever you can get done. Since the dye didnt work I'd want testing done to see what axillary lymph nodes you have left, as well as the nodes under your breast bone... What are they called? The ones Donna had a recurrence in. They checked mine with the dye to make sure my cancerous breast didn't route to them. I even signed a waver before surgery authorizing a biopsy of them if they did.
I know this is a LOT, an overwhelming LOT, but your situation is unusual, your disease has acted unusually so I think doing everything you can now before you make these decisions is important. Just doing Xeloda for 6 months after what's happened feels..... I would want at least two other opinions before going that route.
Hang in there! If you have anxiety issues or sleeping issues talk to your doctor about it. Depression as well, don't let these treatable - and common! - problems affect your health while you are going thru this very, very difficult time.
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 Soorya Quote  Post ReplyReply Direct Link To This Post Posted: Jun 19 2018 at 4:32pm
hi Everyone

I am still working on getting second opinion from MD anderson.

They ruled out surgery as they think it will not cure under laying problem

So Chemo and second time radiation is the options i have.My oncologist is checking for immunotheraphy. Will have some answers next week.

Kellyless,
I had my scans on 18 may and they are all clear.So hopefully, no change in that

Thank you all for all your support. I need it the most now.Is anybody heard of something like this happened before.Like cancer coming back once chemo stops.


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Soorya View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Soorya Quote  Post ReplyReply Direct Link To This Post Posted: Jun 21 2018 at 10:27am
Hi Everyone

I checked with MD Anderson and they are billing 18000 for second opinion

I cannot afford that and so going for cleveland clinic for second opinion

Not sure what will happen next

If any body has any ideas for second opinion please let me know
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 21 2018 at 12:17pm
Soorya,

I totally understand how financial issues can affect our treatment decisions.  If you haven't met your out of network maximum, the second opinion consult could be extremely costly.  When you go to the Clevelan Clinic, ask them to test for IBC.  I believe it is very difficult to diagnose and a punch test is the best way to rule it out.  Let us know what they say.

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 parrynd1 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 21 2018 at 1:28pm
Some insurances will cover a second opinion. I would suggest calling your insurance to check if they will if you haven’t already. It’s good to know either way.

Best of luck!
Dx TN IDC 9/016 Age 28, Stage 3c, Grade 3, 4.5cm, .7cm, 1/5 Nodes, BRCA -, KI-67 >90%, 6/6 I-Spy 2, 4/4 rounds DD A/C, Lumpectomy w/reduction, 3 nodes removed, weekly Taxol/Carb1/12
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