Forum Discussion
The Foxs Lady
I'm feeling very isolated as a TNBC in my area.
To my knowledge there is one other (a recent diagnosis who is now going head long into intensive treatment).
I have physically met three survivors.
I know that there are more out there but I find women with hormonal breast cancer have no concept of TNBC.
Looking forward to connecting with others...........
I was diagnosed grade 3 stage 3.
66 Replies
Hi ShereeJoy,
I wasn't offended at all by your prior posting, don't worry. Just feel for you that you have to go through it all.
I agree; I wished we could all take Herceptin or Tamoxifen and reduce our chances... but I also understand it that women on that who have side effects think that sucks; it does! Anyone with breast cancer has a chance of a recurrance... ours is just bigger :(
I will have a meeting with a genetic team in february; they only come up from Melbourne 4 times a year. I don't expect much from it, and even less reading the postings here.
Wished you were closer by, I could pop around and lend a helping hand... must be hard to miss your husband half of the time, juggle 2 young kids AND treatment. Hope you have lots of friends and family to help out. Big hug!- So sorry jacky if that came out wrong I totally agree even going through it once is "shit"!!! And with tnbc we all have a high chance of reoccurance... I was just unlucky twice lol but like jewel has said to and she took the words right out of my mouth! The sexual abusers, the drug addicts the smokers and heavy drinkers... All of which I don't do and here I am with cancer. I too have been told brca 1 and 2 are not the only genetic cancers. Can't wait until they find the rest as this frustrates me the ladies who get to take hormones and herceptin blockers and complain about it... I only wish I had of had Something post treatment first time to give me a better chance of it not coming back! You are left High and dry post chemo and radiation and surgery for tnbc. This is why I personally raised $14000 and my team for "mothers day classic" raised $28000... I am desperate for more research in triple negative. We need it now before it is to late! :( I am hanging on for better days I want to grow older with my kids. I am only 38 with a 5 and a 7 year old son who this diagnosis has had to relocate to Brissy (1000 or more Km's from home) and hubby is commuting to see us on a 2 week on, 2 week off basis because of our business (a Newsagency) that we are struggling to keep afloat ATM
Hi Janey, I'm with you: I didn't cause my cancer! Maybe polution and our highly refined foods play a role, but not how I manage my stress or whether I had a happy childhood or not. I am NOT to blame. What I have in my own hand is how I cope with the diagnoses and the treatment, and I'm doing my best. That's where my responsibility lies.
I would love to catch up! I am in Albury/Wodonga (NSW/VIC border), where are you? Hope not too far away... Is there any way to contact one another without writing our (email) addresses on an open internet page? I'm new to this.
Good luck with your last chemo tomorrow; will you still need radiation after? Love to hear from you again.Janey, I hear you, I've been through feeling responsible and guilty for getting cancer through not taking better care of myself. The truth is we all have stresses in our lives and sometimes circumstances are beyond our control, it is just how we react to those stressors that is the difference in what chemicals are released in our bodies. But we can only do what we can with what we know and what resources we have at the time...so, I try not to beat myself up about it any more. Sure I could have handled situations differently, definitely it would have been better if I had considered myself as important as all the other people in my life that put my needs as a priority. I think the diagnosis of triple negative makes us all ask the big question...WHY?? We can't blame it on hormones or receptors or genes, things that are out of our control so we start coming up with other hypotheses. I know people who abuse their bodies with drugs, alcohol, cigarettes, have dreadful diets or are anorexic and don't exercise and they haven't got breast cancer, so why do I? Maybe it's environmental factors? Perhaps it is related to childhood traumas or past lives, karma or unresolved emotions? I was told when I had genetic testing that even though I didn't have the BRCA1 or 2 genes, it didn't mean I didn't have another gene as they are quite sure there are several more that are yet to be discovered and my specimen will be stored and tested again when they do find those other genes. And as you say, Mother Nature is full of anomalies and irregularities. And here we are with TNBC...shit happens?? For me, with what I now know about health and nutrition, I am just trying to take care of myself better through a (mostly) healthy diet, fresh air, sunshine and moderate exercise but most of all spending as much time as I can doing the things that make me happy like spending times with family and friends, connecting with nature and spirit, singing, dancing, laughing and loving plus avoiding toxic relationships and situations as much as possible. I wish you and all the other ladies who are still on treatment all the best with the rest of your treatment and beyond. It's great that everyone is able to share their experiences and thoughts and how they are feeling. We are not alone. Take care of yourselves xx
- Jacky - I so hear you my friend. The stress theory irritates me a little because it always makes me feel if only I had have managed my life better....if only I hadn't done this or that. It makes me feel like I am somehow responsible for the manifestation of my cancer. I also have had some people tell me it's I undealt with childhood trauma (I didn't actually know I had had any) or that it's trapped anger. You know what .....I think that stuff is all crap. For me it's pure science. If I look at Mother Nature and she is full of anomalies and irregularities - and I think this with a combination of a saturation level of chemicals and genetic predisposition - and here we all are with TNBC. I also am the youngest at breastcancer groups and chemo - and I am 51. Where do you live? I would love to catch up for a coffee sometime. I am about to do my last chemo tomorrow.....
Hi ShereeJoy. I cannot imagine how hard that must be, having it hit again. Do you have to start treatment all over again??
I guess one of the things that make it so hard is that at the end of treatment (which in itself isn't nice to say the least) you don't know you're done, clear. The ongoing fear... and in your case it has come back. I'm so sorry. And I'm sorry for whinging about myself... :)
But thank you for the big hug! Big hug for you too, hope and pray it all goes well!- Big hugs jacky... I have been fighting tnbc for nearly 3 years now. Handled my first diagnosis so well .. But this advanced breast cancer business is tuff! Xx
Hmm, reading all the comments I feel stress as a precursos seems to become a common theme, also in my case. Or; is life often so stressful that it's almost unavoidable to have a stressful period prior to a diagnosis like this?
Apart from not meeting many TNBC patients, I also see that often I'm one of the younger ones at every treatment (even at 48!); the majority of oncology patients seem to be well in or over their 60. I must be a very bad person; I'm a bit jealous of anyone having had so many more years without this worry. I do realise though that I'm also lucky it hasn't struck much earlier.
3 years of stress after immigrating to Australia (and then getting Immigration to play havoc, being stuck in a job where bullying was part of the deal, and my husband having to re-sit all his medical exams 25yrs after he graduated) we were just starting to get ourselves sorted, and enjoying ourselves.
At the moment it feels like chemo is all I've ever done, and will be all I ever do from now on. The end of the tunnel is somewhere, but I can't see it at the moment. And it only leads to radiation... but at least that's only 6 weeks.
Sorry, am a bit sad at the moment.- Hi Linda... I've exactly the same diagnosis as you. Grade 3, stage 3, one lymph node cancerous. I had to ask the question... the oncologist punched in the numbers into the pc, along with size of tumors.... results were 75% chance of a five year survival, not too bad. I was told that with triple negative, if we can get past the five year mark, our chances of survival are better than hormone receptive cancers. Hope this has helped. Cheers Jo
Hi, I was diagnosed TN in May 2007, grade 3 stage 3, had lumpectomy, a wider excision then full mastectomy followed by chemo and radiation along with complementary therapies. I had to travel away and stay for the duration of radiotherapy. I've passed the magical 5 year milestone and try to remain positive but the reality is I still feel I live with uncertainty. I've had 2 reconstructions. I've also had genetic testing and don't have either of the known genes. I also agree that stress is a major contributing factor. I'm now 3/4 way through a Bachelor of Naturopathy so hope to help other people as well as myself to live healthy and well. I'm coordinator of my local BC Support Group. I'm happy to chat about my experience over these last 6 years. All the best x
