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Distant Recurrence in Brain

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parrynd1 View Drop Down
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    Posted: Mar 31 2018 at 5:37am
Hello TNBC community,

Just found out I have a small lesion w/swelling in the center of my brain and wanted to hear anyone else’s similar experience. Doctor put me on Dexemethasone to help with the swelling. I meet with a Neurologist this coming week to go over the next steps - whatever those are. I’m scared after seeing all the statistics and information out there regarding distant recurrence in the brain (or really anywhere). I don’t know how to comfort my fiancé or family so if anyone has advice from maybe that side as well I would appreciate it. Before anyone gets upset about this part I’ve always been the strong one. I handle things well and my fiancé and family (his family but they are like blood to me) get very upset. If I have a slight cold he will wake up all night with panic attacks (he has been working on this ptsd from the first experience), his mom will call and check up everyday for just the sniffles and ‘threaten’ to drive the 4-5hrs to make sure I’m ok, so you can imagine how devastating this news is and it helps me cope by being able to help the people I love. I just can’t seem to find the good this time even just for myself let lone those around me except for the fact that I do have these amazing people. I also can’t help but think how much I’m hurting them with this even though I had no control over it.

A little background info:
In 2016 I was diagnosed with stage IIIa (3a for short) TNBC when I was 27 and was approved for a study where I did 3 months of chemo - responded well with one tumor disappearing, lymph nodes normalizing, and main tumor shrinking from 4.5cm to 2.5, then did another 3 months of AC - didn’t respond well as rumor only shrunk .5cm, surgery, lymph nodes came back positive so went on to do another 3 months of Taxol/weekly Carboplatin, then 30 something radiation treatments which I just finished the week before Thanksgiving 2017. I’ve been having headaches for 2 weeks so I talked to my doctor who ordered an MRI, after waiting on insurance approval and the schedule to get in for the MRI it’s been about 2 months. I’ve also been feeling nauseous frequently, very tired no matter how much sleep I get, and my favorite is my lower left eyelid twitches several times a day. I’m also worried about some ‘scar tissue’ in the problem child breast, but haven’t been approved for imaging yet for that.

If anyone out there has gone or is going through this what were the next steps after discovery? What treatment options did you have? Prognosis? How are you coping?

I’m one quarter away, just 11 weeks, from finishing my thesis and getting my bachelors degree (something only me and soon my older brother will have achieved in our blood related family) and with high honors to boot...I’m hoping this is something that I might be able to handle while in school for, but don’t know anything about this surgery or recovery times or how they begin to treat it other than radiation. I left school for the first treatment, but I’m worried if I leave school this time I may miss out on being able to finish. Any information would help me grasp this situation and be better prepared for whatever the doctors say next week and beyond.

Sorry for the long post and thank you for reading through it.

Thanks for your help in advance and good luck, good thoughts and prayers to everyone else out there
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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 31 2018 at 11:51am
parrynd1,

I'm so sorry to hear about this new development.  There are usually two types of treatment - stereotactic radiotherapy (cyberknife) and whole brain radiation.  With just one small spot, you should be a candidate for the stereotactic procedure.

How do you decide if a patient should receive whole brain radiation?

The decision to recommend whole brain radiation therapy as opposed to stereotactic radiotherapy is really based on the number of lesions and size of lesions the brain. Traditionally and based on the studies in this field, 1 to 3 lesions are more appropriate for a stereotactic radio surgery approach and the line in the sand from a size criteria is a lesion that is less than 3 centimeters.  




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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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: Apr 01 2018 at 1:36pm
I don't know the answers about treatment for your mets, but I'm quite familiar with panic stricken in-laws. My mother in law especially, and my husband's two sisters get so distressed it stresses ME out. But worse is the stress it puts on my amazing husband. Thru my first trip through TNBC treatment I bent over backwards to downplay everything when around them, as well as friends that reacted like they did. I always wore a wig (hate them!), Didn't speak about how sick I was from chemo, etc. With my recurrence I just..... Let it go. I realized it was a burden I didn't need. I've always believed that honesty is the best policy in all things, so I needed to be honest with my disease and treatment and trust that it would be the best thing for everyone in the long term. And it was. The immediate panicked distress did improve as time - and my treatment process - wore on. We spent more time with them because being with them wasn't a burden of worrying about what we say, or how we say it. My cancer buddy - a friend that was diagnosed at the same time as me both times - Did The same thing with his family. We're both grateful that changing our way of thinking and communicating with our whole friends and family group ended up making our journey thru treatment better for everyone. I
I'm so sorry you are going thru this! I do hope you will get a second opinion on any treatment you choose to do. If you need suggestions for doctors that might be good for a second opinion let us know - lots of folks here have seen excellent specialists all over the country. My last bit of advice is this: when you need something and your insurance company is dragging their feet on approval - hound them mercilessly! Call every day, ask for supervisors, be relentless, keep them on the phone endlessly - I've found over and over that the squeaky wheel does get the grease! I write down every call, who Im talking to - play the cancer card, tell every one what you are going thru and how young you are! Its time consuming and no fun but I swear it can work. Often times time is of the essence with TNBC, Dont accept delays from the evil insurers!
Let us know how its going, we will all be thinking of you, 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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parrynd1 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote parrynd1 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 06 2018 at 10:47am
We met with the neurologist yesterday and found out that the tumor is thankfully not grown into any of the brain tissue, but is a part of a major blood vessel where it’s located. All my doctors are saying craniotomy 2 weeks from now as they want it removed right away (as do we) and targeted radiation afterwards...which I’ll take over while brain radiation!

Thank you for finding the articles you posted :)
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 parrynd1 Quote  Post ReplyReply Direct Link To This Post Posted: May 07 2018 at 5:53pm
Just wanted to update in case anyone else is facing a similar situation.

Surgery went great and the mass was completely removed! The doctor was worried about getting all of it since it was attached to a major blood vessel. Bad news - it is a confirmed tnbc recurrence and a CT scan showed a few spots in my lungs that are too small to biopsy. We have another CT scan scheduled to see if they are from me having the flu a few weeks before the first scan or if these nodes have changed at all.

As far as treatment I am scheduled for SRS (focused radiation at site of tumor) to clean up any cells left and brain scans every 3 months. Depending on the lung nodes chemo may also need to be done.

One cool thing is that they are sending my tumor to have expanded genetic testing done to see what treatments will work best against it. This isn’t gene testing for the stuff I was born with, but specific to this tumor and it’s genetic makeup. My oncologist said it covers a few hundred different aspects of the tumor on top of a previous panel we did that tested around 50 as part of a clinical trial. For us in the TNBC community arming yourself with as much knowledge about your specific situation is key to gaining control and beating this cancer. I did dose dense Neoadjuvant chemo and didn’t have a good response so after surgery I completed a taxol/carboplatin plan for anyone curious.

On a random note brain surgery really wasn’t so bad. The incision never really hurt, but I did have headaches and shooting pain if I didn’t rest my eyes enough (tumor was by the vision part of my brain which has affected that part of recovery). I was only in the hospital 3 days and didn’t feel like I needed the strong pain meds after day 3 of being home so I just took Tylenol. Also take it easy...it is brain surgery even if it feels like it wasn’t as bad as you thought.

Prayers and positivity for everyone out there!
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 katie420 Quote  Post ReplyReply Direct Link To This Post Posted: May 13 2018 at 12:06pm
hi parynd hoping and praying for you as i m going through the same thing as you are going.Sending big hugs.

Edited by katie420 - May 13 2018 at 12:07pm
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parrynd1 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote parrynd1 Quote  Post ReplyReply Direct Link To This Post Posted: May 13 2018 at 3:07pm
Katie, thank you I will also send some your way...every bit helps.
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 parrynd1 Quote  Post ReplyReply Direct Link To This Post Posted: May 25 2018 at 4:45am
Update

Radiation starts in 1 week on June 4th doing 3 rounds of SRS. We found out that my lung CT showed growth in one node, the other disappeared and a new one has popped up. They are too small to biopsy. My mammogram Monday showed 2 masses in my left breast (where the cancer was originally) that the radiologist put at a 4 on the bi-rad scale. Biopsy of those will be June 1st. If it is TNBC she said they won’t operate. Is this normal? The brain tumor is gone, there are 2 .6mm nodes in my lung and 2 lumps in my right breast. I’m still not sure if I understand why you wouldn’t remove the breast tumors (we are assuming) while I’m healthy enough before chemo. Has anyone else experienced this?

We are devastated. The onc is telling us that after radiation I will have to be on chemo for the rest of my life. She said I was now considered uncurable and the goal now is control of the disease. Eventually they will run out of chemo to use. I didn’t respond well to AC the first time and they think I didn’t respond well to the Carbo/taxol (after surgery so couldn’t tell) since I’ve had a recurrence so soon. Chemo-resistant is now part of my vocabulary. I may also be resistant to radiation which I guess is a thing that can happen due to recurrence within 4 months of radiation.

I was told if I’m responding ok to chemo I may live 3 more years. Max would be 5 but that’s mostly people who are chemo sensitive. If anyone has any success story in a similar situation I could sure use it. Doctor is trying to find an immunotherapy trial I qualify for. In the meantime I have a PET scan scheduled to investigate other pains I’ve noticed this week.

How do you tell your family? How do you cram 50 more years of living into 3, part of which, I will probably be sick for. My fiancé is coming to terms with us never being able to start a family (due to scans every 3 months), but now me being gone all together. I don’t know how to help either of us deal with this. It feels like every week the news gets worse and worse and we are on this downward out of control spiral.

The lumps in my breast (I have breast conservation surgery not mastectomy) I noticed around the end of Nov ‘17 and my onc did an exam and said not to worry, Feb ‘18 rad onc followup also did an exam and wasn’t worried, she ordered the brain scan at this appointment for the headache I had for last 2 weeks, March another follow up with onc, exam, not worried. I contacted them through the hospitals MyChart app (they always get back within a few hours with email/call it’s a great tool for patients) a few weeks later expressing great concern over these lumps, that I had pain there, and was told my doctor wasn’t worried about them and if it was still bothering me in 2 weeks to move up my mammogram. I tried but they couldn’t schedule me sooner. I feel like this may have killed me, but I’m not sure if I’m just looking for someone to blame. I know I am responsible because I didn’t push it as hard, but I can’t help but also be upset with my doctor. This is their specialty. Is this upset feeling misplaced?

One bit of good is i’m recovering from the brain surgery well and I graduate in just a few more weeks. Maybe work on my thesis/homework will be a good distraction.

Edited by parrynd1 - May 25 2018 at 5:17am
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 Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: May 25 2018 at 11:10am
I am so sorry this is happening to you! I don't recall seeing if you've sought a second opinion? You need to get into another institution with a doctor specializing in TNBC, it seems like you'd be a candidate for clinical trials at this point. did she talk to you about immunotherapy?
have you reached out to Steve here on this site? He is our TNBC guardian angel, a patient advocate that has helped many of us. He got me an appointment with an amazing doctor at MD Anderson when I had a recurrence in 2016 (it changed my treatment plan which very well may have saved my life) you can private message him here at SagePatientAdvocate .
You are too young to not fight, let's get you into an amazing doctor and find a new treatment plan!
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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parrynd1 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote parrynd1 Quote  Post ReplyReply Direct Link To This Post Posted: May 25 2018 at 11:55am
Thank you Kelly,

I sent a message off so here’s to hoping. My doctor does specialize in breast cancer and is looking for an immunotherapy trial for me. I just don’t understand why they would want to leave the breast tumors in and not even consider surgery. My brain met was one very small lesion not even grown into the brain tissue, surgery was able to remove the entire mass, the nodes in my lungs are .6mm (we are all assuming they are TNBC given everything else and they did grow from my last CT scan last month) too small to even biopsy, but the 2 breast tumors at 3+cm each.

Do you mind if I asked what treatment you did and where? How are you doing today?

I’m at UCSD and have felt like my doctors were very competent up until now literally trusting them with my life. Anyways thank you for your advice and referral.
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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