Triple Negative BC
Hi All.
Anyone else out there with a triple negative BC diagnosis? I have started a group for anyone interested in joining and sharing their stories?
Hope to hear from you soon, xo Christie.
Forum Discussion
83 Replies
I would like to tell of my wife's terrible experience with her triple negative breast cancer (TNBC) and the lack of knowledge and communication with her "Support team".
Michelle was diagnosed with Stage 2 breast cancer on the 16 Nov. 2010. She had a 14mm lump in her left breast.
She had a lumpectomy and had 17 lymph nodes removed from her armpit, some cells where inoperable as they were so close to the skin on her chest. Chemo followed with AC and Taxol.
Radiation was the next step for 6 weeks, during which they found cancer cells near her left shoulder blade which were treated. Immediately following Michelle underwent scans which found she had no cancer cells present in soft tissue but found small specks in her lowern spine. We still didn't realise this was really bad, this was 5 August 2011.
I said to the radioligist. " that does not sound as bad as I though". He said " Yes, but she will need continuing ongoing treatment ".
Michelle started to have pain in her lower spine so she underwent another 2 weeks of radiotherapy which fixed the problem. She also had pain in one of her teeth. She went to our local dentist who said she is a 'sick girl' and could not find anything, but charged her $60 anyway for a clean?. We heard from a nurse that we have access to $5000 worth of dentistry, which our GP confirmed. That was good to know?. She went to another dentist who fixed the problem. Michelle was so happy she cried.
Michelle was starting to get a lump on her neck around the start of Sept. , which the oncologist said to wait for chemo which she was to start again on 28 Sept. ?.
On 5 September we went to our GP because Michelle had shortness of breath and a bad cough for which he prescribed a puffer and anti-biotics. There was whopping cough goiong around at the time and flu. This made things slightly better for a while before things got worse. You get that gut feeling that the cancer has spread, but you think the doctor knows best. I took her to Wyong emergency on the morning of 17 Sept. because Michelle's breathing had got worse. I still know we should have gone sooner. But I don't know that it would have helped given that the cancer was always spreading so quickly after treatment. Her oncologist told the doctor to transfer Michelle to Gosford Hospital around 11pm Saturday. I asked nurses when the oncologist was coming. They informed me that 'they don't come in on weekends?'.
Michelle passed away around all the family at 5.52 am on Monday morning.
There are many other aspects to this story but it is too emotionally painful for me to write.
I just want people to know of our experience and to get second opinions and do research on internet, which is where most of our information came from. Call the cancer council and leave a message with their service if they cannot answer.
My daughter 21 went to her doctor to ask about gene testing. Their reply was, " Do you want to know. It could change your outlook on life". Is this bad consultation.
My other daughter 18 called the community health line in a broucher. They told her," your probably too young to get a mamogram". We are getting her tested.
Our oncologist sometimes did not recieve messages from his receptionist?.
I feel now that we were suppose to be cancer experts ourselves.
Tell yourself, who do you believe along your journey with breast cancer. Who would your trust to have your life in their hands, because in the end we could trust very few. Make sure you ask all the questions and write down every step. Take care and be aggresive in your pursuit for answers.
Oh Kerrim you poor bugger. Hopefully you fair better for round 2. Bad enough dealing with the chemo effects let alone bcoming neutropenic.
I have finished 3 rounds of FEC and heading off for round 4 which will be docetaxel.Hoping it all goes well. A bit scared of the changing chemo meds.
Sheree YAY you are nearly finished! Will be nice to be home and staying put with your family!
xo Christie.
TAC is named after the initials of the chemotherapy drugs used, which are:
- docetaxel, which is commonly known as Taxotere®
- doxorubicin, which was originally called Adriamycin®
- cyclophosphamide.
I couldn't believe there was so many treatment, how do the Dr decided which ones to do. I was so worried how I was going to go with my first treatment. My fear were right and now I know to trust myself. I didn't feel well at all 3 days after my first round by day 9 I was so ill, that I woke my hubby up at 4 am and said take me to hospital. I was put in for nearly a week. I went neutropenic. The Dr keeped asking of I had the needle the next day, which I did, the day clinic did it. So no wonder I felt bad , no white or red cell in my system and I had an infection somewhere. Not hard when everyone I tried to stay away from had the flu. So trying to get myself all pumped to go and do round 2. I was ready to say no more, dont care. But I know I have to do it. Dr said they will reduce my strenght. So fingers cross. Still no port put in so I wonder how mant times to be jabbed this time. It took 3 Dr and 5 times to get blood the other day. Sorry for my rant and thank you for all being there. Hope you are all doing great and hope you treatments are getting better. xx
Hi Christie,
Thanks for the tips with inner health plus capsules. I'm having the same issues as you.
Will be doing round 5 of FEC next week, but so far so good. The only prob was that l almost fainted whilst the nurses were trying to take blood during last chemo. I was dehydrated, so it took them a long time to take blood. It just all got to my head. Hopefully won't go through that again.
Yeah just two more to go!!!!
Liz :)
Hi all.
I have been MIA for a while! Kids and life keeping me VERY busy! Any way I have completed round 3 half way now! No more nasty FEC chemo, my poor arm veins are like elastic bands that are streched to breaking point. Extending my arm is very hard now, but I persist with the pain and keep streching the arm and much as I can.
So far the worst effects for me have been the digestive upsets. My tummy does not sit well. I have been taking inner health plus capsules to try and replace the good stuff and they do really work! They are awesome for conteracting thrush also without having to use medications!
Next round will be docetaxel, can any one shed any info on how they felt on this drug??
xo Christie.
Hi all.
I have been MIA for a while! Kids and life keeping me VERY busy! Any way I have completed round 3 half way now! No more nasty FEC chemo, my poor arm veins are like elastic bands that are streched to breaking point. Extending my arm is very hard now, but I persist with the pain and keep streching the arm and much as I can.
So far the worst effects for me have been the digestive upsets. My tummy does not sit well. I have been taking inner health plus capsules to try and replace the good stuff and they do really work! They are awesome for conteracting thrush also without having to use medications!
Next round will be docetaxel, can any one shed any info on how they felt on this drug??
xo Christie.
I doing better then I thought so far, feeling a lite headed and belly a little funny, keeping with the small plain meals and no diet coke :( feeling a more drain easliy. But being totally spoilet by hubby xxx Will see how the rest of the week goes. hope every one is doing ok with the rounds
Hi Kerrim,
I know how you feel having being diagnosed on 6-6-11 myself I didn't think the test were ever going to stop they sounded scarey but in reality they weren't really it's just all the prep & waiting that gets to you the most. I have my 2nd round of Taxetere this Thursday but I have to say I was soooo scared before my 1st chemo I just wanted to run a mile but after a couple of calm me down pills the chemo could not have gone smother, no reaction to the chemo at all much to my relief and my side effects were really minimal....we shall see how lucky I am after round 2. I'll keep you posted :-)
Good luck with everything, Brightest blessings, Susan xxx
Hi, i was just diagnosis with Triple Neg BC, I had a lumpsectompy and start chemo on the 29/08/11. Was glad to find this site as it is hard to get my head around the treatments and all that you have to go through to hopefully be cured
HI Christie, Wow...that is one quick way to lose your hair there one second and gone the next :-0 I think I shall have a wee cry about mine too as it is very thick and just how I've wanted it for ages and then I get diagnosed. I'm having the genetic testing done because my mum was diagnosed at age 52 with BC and unfortunately had spread throughout her body she made it until I was pregnant with my twins and past away peacefully with all of us there with her at 57. She was the 1st one that we knew of with it but last night I recieved a phone call from my other aunt to tell me that my mums sister was diagnosed 3 years ago now with BC "close family ties hey" :-D. I want to give my 6 kids a chance to be tested should it come back positive which I think It just might, anyway I'll find out soon enough! Now my treatment.......I am have 4 rounds of TC and then 6 weeks of radiation for 5 days of each of those weeks and hopefully thats it. I was pleased to find out that Taxatere is a natural form of treatment as well its from the Pacific Yew Bark tree which kind of made me relax abit more knowing that it wasn't something synthetic. I know It must sound odd me saying that but I just found it a little more comforting know they were poisioning me with a natural product! haha....So i'm day 7 after chemo today so I have a few more days with my thick hair and as soon as I see it's starting to thin I shall wiz it all off! I'm feeling quite ok and I hope that round 2 on the 25th of August goes just as smoothly....I'm willing it to :-) Anyway Stay positive and calm,
With brightest blessings Susan xxx
