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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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