I'm new - and scared

Fickelchook · November 2012

Hello ladies. I was diagnosed on August 7, 2012 with grade 3 TN IDC right against against my chest wall. I am 37 years old with 2 small children (5 & 2). I breastfed both kids for just under 2 years each. Very little family history (a cousin of my mom's) No BRCA 1/2 but the genetic councelor told me they are tracking down genes 3/4 and they think I have one of those. My midwife found my tumor during a yearly exam and I know it had not been there long, seemed to pop up overnight. It was 2.1 cm on the first mammo and ultrasound. Two weeks later we did another scan and it was 2.6 cm. When we found out it was triple negative, my surgeon and oncologist both recommended a study for TN which was 12 weekly doses of Taxol followed by AC every other week for 8 weeks. I've been through 10 weekly Taxols and last Tuesday we realized that it wasn't working when she did an external exam and got a measurement just under 5 cm. Yesterday I saw a plastic surgeon who pointed out that it has grown enough to be a visable bulge in my breast so there is no denying it's bigger. We met with the oncologist yestday afternoon and she said that I need to get into surgery ASAP. She called the surgeons while I was there to tell them they needed to get me in immediately. We hope to find out a schedule today - if it is before Thanksgiving we will wait for surgery but if it is after Thanksgiving she is going to give me a dose of AC today. That will also give us a chance to see if it responds to AC (hope, hope). My plan has been to get a bilateral mastectomy but that was a choice - I learned yesterday that I no longer qualify for a lumpectomy due to being resistant to chemo. I found these boards two days ago and have been reading. I don't know where to turn and am scared. It never occurred to me that chemo wouldn't work. What does that mean? My oncologist seemed unsure if other types of chemo would work or not. It's also twice as big as it was before so I'm scared that it has spread. I am getting another ultrasound tomorrow to check the lymph nodes and get an accurate measurement. My general surgeon is out of the office this week so my oncologist said I may not get an office visit but just see her pre-op. Everything is happening really fast and last week at this time I thought everything was fine. I feel like I'm going crazy. Any advice, help, words of wisdom, etc. are greatly appreciated.

Luah · November 2012

Fickel: Of course you are scared - and you are not going crazy! This disease can throw some horrifying developments our way and it's really stressful when waiting for scan results and treatment dates. It sounds like your onc is on top of things, and advocating for you, which is good. The study you were put on is a really interesting and important one that shows promise for TN patients generally; I'm so sorry it doesn't seem to be working for you. While your onc can't predict which chemo drugs might "work" on your tumour, there are several regimes to try. Often women will respond to taxol but not AC, and others respond to AC and not taxol -- and there are other 2nd line drugs as well. No matter when your surgery date comes up, it seems likely that more chemo is in the cards for you... and there are many options, one of which will be the ticket for you. Hugs and best wishes, keep us posted.

Luah · November 2012

Just to add, there is another thread here about neoadjuvent chemo and TN that you may want to check out: http://community.breastcancer.org/forum/72/topic/795289?page=1#idx_9 . Several ladies have posted there about level of response there, and for some, it seems only the surgical path report could give an accurate result (not an external exam or US), for reasons of dead/scar tissue etc.

edwards750 · November 2012

Bless your heart we all know about the fear factor and things do move quickly once you get the dreaded dx but what you also need to know is treatment plans have come a long way. My mother was dx in the late 80s and then the only treatment plan seemed to be mx. It is good your ONC is on top of things. She will be your go to person from now on. My original dx was stage 1 until the path report came back from the lumpectomy saying I had a micromet in the SN. Even my BS was surprised which isnt a good thing. Long story short my ONC ordered a Oncotype test to examine the biology of my cancer...it came back with a low score, smaller tumor and non aggressive cancer so you see what might first appear to be so ominous might be after all. Try really hard to be calm and rely on spouse, family and friends. Your support group, other than us, is really important. Remember too that bc was once thought to be a death sentence...it isnt anymore. diane

Fickelchook · November 2012

So I had the ultrasound yesterday - my suspicions were correct, there is a lot going on in there. The tumor has grown to 3.25 cm so it's bigger but not growing as fast as it was. Unfortunately we also found two additional "areas of concern" which had all the markers for tumors, but we aren't going to biopsy since I'm scheduled for surgery. They are on opposite sides of the original tumor - each is about 1.5 cm. They were very close but did not look to be attached. I have no idea what (if anything) this means for me but surgery is scheduled for the 29th so they are going to call me this morning to tell me when to come in for AC. I can't believe this is reality.

TifJ · November 2012

Fickelchook- Please come join us the "Calling all TNS" thread. We are all triple negative and have great ladies that are very knowledgeable with great advice. So sorry you are going through this.

Teka · November 2012

Fickelchook,

I am sorry! I'll keep you in my thoughts while chemo and surgery give you a more positive prognosis.

Luah · November 2012

Fickel: Sorry the ultrasound result wasn't better. But it's good they're on top of it. I am thinking they will want to get you in for the AC pronto, so your WBC has enough time to recover before surgery. Keep us posted.

Fickelchook · November 2012

Had the AC today, the oncologist wants another PET scan so she is fighting with insurance but is confident she will get it approved. I am feeling like CRAP. I will definitely look for the TN board - still navigating around here Thanks so much for being there for me!!!

Teka · November 2012

Have a restful weekend!

yellowdoglady · November 2012

Fickelchook,

Sometimes it is better to apologize later than to ask permission first. If you need it, do it, and explain the problem to the imaging center. They told me that if I was turned down after an appeal, I'd owe only what my insurance would have paid. On appeal, I was cleared for the scans needed to start chemo a week after I finished it. Waiting five months would have been the difference between life and death for me.

You must advocate for yourself, our friend.

Deniset717 · November 2012

Hi, I just saw your post and wanted to let you know that I was diagnosed with triple negative and brca negative this September. I am 40 with no history and the genetics testing is negative. I had a double mastectomy 3 weeks ago and start chemo next week. (I had a lumpectomy Oct 1st with a clear margin but more cells on the border of the area removed, so I decided to get the bilateteral). I was wondering about what your oncologist has said and what is happening for you now. My heart goes out to you and I know how scary it is but try to just take deep breaths and take it 1 step at a time and you will get through this. I have 2 children and and fabulous husband and they need me, so I will beat this! You will too! Stay positive and focused on beating it. Try to overcome your fear with determination. I hope to hear back from you soon.

I'm new - and scared

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