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
Hi Shereejoy
Yes it does! I didn't have radiotherapy. the side effects to the Tax sound the same to what I experienced and I still get the aches but nothing like during the chemo.
Hope you are coping with it all
Catherine xox
- My story sounds so similar to yours Catherine... Only I had 13 positive nodes :(
- My story sounds so similar to yours Catherine... Only I had 13 positive nodes :(
- Michael, You seem to have your head around things and I admire you for that. I wish you well. You certainly give good advice re 'gut instinct' . That's all we have when ends! All the best, Diane
- Michael, You seem to have your head around things and I admire you for that. I wish you well. You certainly give good advice re 'gut instinct' . That's all we have when ends! All the best, Diane
Micheal, thankyou for sharing such an emotional story. The whole TNBC scares the heck out of me. I dont see the harm in genetic testing. Being a woman, I think I would prefer to know if Im genetically more prone to cancers, that way I can keep a closer check on things.
Hope you and your daughters get the answers and find a specialist who cares enough to listen.
xo Christie
Hi Deeay,
Yes the kids are coping alright, keeping them busy. I still break down every morning and late afternoon usually. Nights are ok, get about 6 hours sleep. Michelle worked casual night shift so it is like she is at work. We were married for 17 years, it has been very hard to accept.
Ironically I found the celebrant that married us in the funeral celebrant section and she spoke at the funeral service. She still had our wedding photos after all that time in her album. Beautiful lady, hates being part of the funeral and wedding "business" now, opposed to being a community service when she started 20 years ago.
Michelle had shortness of breath and a chesty cough, two symptoms of Lymphangitis carcinomatosa which took her life. Puffer and antibiotics did little. I tell myself that Michelle is in a better place now, out of pain because she had such an aggressive type of cancer. Cancer in the lungs is supposably hard to detect until it spreads. Do you take action against the doctors?. I do not know. Nothing will bring Michelle back, she would have suffered extensive chemotherapy for the rest of her short life expectancy.
Doctors are only human, relying on books and experience like any other craft and they do get it wrong, so we need to seek other opinions when we get that gut feeling that something is wrong. Life is too precious and death affects many.
Our oncologist told us that some have survive 20 years with metastatic breast cancer. That was the last thing he told us before things got bad. Only surviving 3 weeks after being told that, really hurts. In a way I am glad Michelle did not know though. But of course I do harbour a lot of regret.
So many women have been told they only have a short prognosis and live many years. Talking to the exceptionally inspirational women in the Soiree group from cancer council left me with heartfelt, unconditional admiration for the strength they possess.
I'm glad you have almost completed your treatment. It is great to pass another milestone. Michelle was so happy and always counting down the days on the calender. The look good, feel better program run by the cancer council was an uplifting experience for her also.
Advancements are made every day in research and the government are finally allocating funds for vital services, so things do look promising for the near future.
Take care and stay safe.
Thanks Liz, I also have a 15 year old son, my wife was only 42.
My wife's cancer suprised everone because of it's aggressiveness. I always thought that there was only one type of breast cancer. What suprised me is how little is known about treatment for TNBC. We just have to pray that money is going into research and not 'employees benefits' when it comes to charities annual statements.
Michael I'm so sorry to hear about your terrible experience. In the end you can probably trust no one, except your own gut instinct.
Hope things go well for your daughters.
Liz
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.
