Hi Ladies, I am a triple negative breast cancer survivor and am entering my 16th Month following diagnosis. I would be interested to chat to people who have had the same diagnosis to discuss how you have gotten on with life following diagnosis, as I am particulary scared at the moment that it is going to reoccur. I am undergoing shortly further preventative surgery however there is that every thought at the back of my mind that it might come back.

i am sure there will be other women on here who have had the same diagnosis, and will be able to give you information or support, so thank you for joining the club nobody wants to be a member of, but we are all glad its here, here we have our support right from our own house, I think with all bc diagnosis, once we have gone through all our treatment, and its finished, its a kind of anti climax, as now we are on our own with only checkups once a year, so we are all scared in case something comes back, and its not picked up, i think as time goes on, that fear just gets a bit less room in our minds, although i think everyone on here, would still be thinking its a possibility of re occurence. i have decided to keep putting it to the back of my mind, and live life, a lot of positives have come out of bc, and now i think of me time, and dont feel guilty about it anymore. some women use meditation, but remember we are all different, and i think we as individuals need to find the way that suit us, thats where this site comes in good yet again, different advice and options from a great bunch of women, and hopefully we can all pick up ideas we might not have otherwise thought of., Please keep in touch with us, by helping yourself, you can help others. Take Care Moira XX

Hi Cassie, I was also diagnosed with TNBC. My diagnosis was last Nov, 4 months ago, following the rapid growth of a lump in my left breast. I was diagnosed and had a mastectomy within 2 weeks. I was stunned and really found it hard to believe, I thought someone had made a mistake. I had no family history and have led a healthy life. When I was diagnosed, all I remember is the sombre face of the surgeon and the diagnosis, TNBC. I had no idea what that meant, when I regained my composure and did some research I was terrified. I have been through the usual ups and downs, wondering how I was going to have the strength to get through everything. My Partner and my family have been there with me the whole way and I am so grateful. I also see a councillor and had a long talk with her about this subject. The medical profession can offer no guarantees but do their best to rid the body of any cancer cells. It seems anyone diagnosed with cancer will always have that horrible thought in the back of their mind of reacurrence. I am so humbled when I hear of people who suffer the ravages of cancer treatment for years on end and willingly go back for treatment. I dont know if I could be so brave. The lack of follow up treatment for TNBC just adds to that fear. I am only half way through my treatment, but I feel much more positive now. I think being stressed and scared can only give the body less energy to repair itself and do the job it needs to do, so I am trying to enable that process. I hope you will be alright, keep in contact, Jacqui

Hi there ladies, I am also the same- was diagnosed with TNBC in November and had the lump and margin removed. The whole experience has just been a kind of blur with every part of the experience happening a million miles an hour. I have almost finished my chemo, 5 more to go and I am due to start my radio therapy in May but have just received the results of my BRAC test and got the news that I do have the BRAC 1 gene, so at this time I am making the big decision about Risk Reduction Surgery. Any opinions about what I should do are appreciated. Anyone had radio therapy? is it that bad an experience. Hop everyone is well. thanks Jeanette

thanks for posting your comments, and a bit of your story, This is so weird you ladies comming on here, (well not that wierd really lol) I watched a doco on tv the other night, a young english girl, who thought she was in this high risk, due to the brac gene, (i never knew about it before watching this), and the doco was about her options should she have it, she spoke to lots of ladies in the same position, it was so interesting, but lucky for her, at the end of the doco she had the test and she didnt have the gene, it was a good presentation though. i have had a lumpectomy, chemo, radio and am now on arimidex hormone for 5 years, and in my experience, radio is not to bad at all, a bit of redness (I made sure i used sorbolene cream, for washing and moisturising the breast area), and of course the tiredness, but once again this was no where near anything like the chemo tiredness, i found if i felt tired i lay down for 1/2 hour, then i was fine to go again, but always remember everyone is different, although the general opinions on here of radio have been the same as mine, with only a few having problems with it. good luck, and i hope you keep comming back here, as you see by helping yourself, you can help others, so thanks again for your comments. Regards Moira.

Hi Jeanette, through my treatment my Ongologist has subjected me to everything mediaclly possible, that is Operations, Chemo (mixture of all different sorts), plus radiation plus genetic testing for BRACA. I must admit I was able to take 8 months off work and just concentrate on getting better. If I felt tired I rested however I understand that everyone has different personal circumstances. Once I started my radiation treatment I actually started to get my energy back and I was able to do more. The chemo was definately worse than the radiation treatment. In relation to risk reducing surgeries I think we all have to look at this from a personal perspective. Speak with your family and friends however for me I have made the decision to have a full hysterectomy and also a double mastectomy. Although I am 16 months in the clear, unfortuantely as you know for Triple Negative there is no drug we can take to prevent reoccurance like the hormone recptive cancers. I have been tested for the BRACA gene however my tests came back as inconclusive however my ongologist has advised that he is treating me as though I am BRACA positive. Based on all of my treatments I have a 10% chance of it coming back however with the above mentioned surgeries it reduces this to about 7 - 8 %. I know this is only a marginal reduction, however it is a reduction all the same. Again it is personal preference and circumstances however I have opted for this surgery as I view it that anything I can do either personally or medically to prevent reoccurance I am going to do. I survived the first lot of treatment and I am sure will succeed again however why subject ourselves again if we do not have to. I know I would have had this surgery as a preventative prior to my diagnosis if I knew that I was high risk., although with no family history I wasn't even looking. Where abouts in Australia are you?

Triple Negative Experience | BCNA Online Network

43 Replies

carolinem
Member
14 years ago
Hi Jules, I think the researchers on curcumin were looking at peperine? to increase uptake of curcumin - they seem to think this is no longer relavent I think? There also seem to be some more bioavailable forms of curcumin now available - look for BCM-95 types. Cheers
jules
Member
14 years ago
Curcumin is the active ingredient in Tumeric.You can add it to juices but to get the uptake you have to have it with pepper or I think ginger.

Thats why I take it as a supplement.I use metagenics inflavonoid Intensive care.

I agree the findings on excersise are pretty definitive.One article I read suggested all hospitals will have gyms attached and doctors will actually prescribe excercise in years to come.I walk everyday and try to do Qigong.

To answer Carolinm I also take a good CoQ10(antioxident)B12 spray(I'm vegan) and flor essence(essiac) and apricot kernals.
As you know there are a million things out there with varying claims,I found you just have to see what resonates with you and stick to it.I think belief is half the battle.Two books I like are Ian Gawler's You can cure cancer and 9 steps for reversing or preventing cancer and other diseases Shivani Goodman
jules
Member
14 years ago
Curcumin is the active ingredient in Tumeric.You can add it to juices but to get the uptake you have to have it with pepper or I think ginger.

Thats why I take it as a supplement.I use metagenics inflavonoid Intensive care.

I agree the findings on excersise are pretty definitive.One article I read suggested all hospitals will have gyms attached and doctors will actually prescribe excercise in years to come.I walk everyday and try to do Qigong.

To answer Carolinm I also take a good CoQ10(antioxident)B12 spray(I'm vegan) and flor essence(essiac) and apricot kernals.
As you know there are a million things out there with varying claims,I found you just have to see what resonates with you and stick to it.I think belief is half the battle.Two books I like are Ian Gawler's You can cure cancer and 9 steps for reversing or preventing cancer and other diseases Shivani Goodman
Deeay
Member
14 years ago
Are these the same? I bought turmeric which is similar looking to ginger root. How can I use it apart from making curries? I was thinking of just adding it to my juicer with vegetables. Would this work, does anyone know? Another thing meant to be good for TNBC prevention is broccoli sprouts( baby broccoli). I've bought it in powder form but am yet to use it. How are you going Julia? Jules, you seem to have everything under control! I went to Quest for Life in Bundanoon which seems to have similar philosophy- eat lots of veggies, juices everyday, relaxation and mediation. Be kind to yourself, find joy in life. Body and mind are very related and the mind is very powerful for healing. I'm also exercising more. They say walking 5 times a week for 30min can reduce recurrence by up to 40%! No time to work huh! Staying healthy is time consuming....
carolinem
Member
14 years ago
Hi, thanks for the info - I'll check it out - how much curcumin do you take - which one do you use and how much? Do you take anything else? Thanks
jules
Member
14 years ago
Since staying at the Gawler Foundation we have become vegan,limit salt,sugar,alcohol and oil.We use flax seed oil for omega 3. Juices are a big recommendation.Meditation is a big focus also.This all sounds overwhelming but after ten days residential we didn't find it hard at all.If you want to look at the web site it's www.gawlerfoundation.org.

(I take curcumin too.)
jules
Member
14 years ago
Since staying at the Gawler Foundation we have become vegan,limit salt,sugar,alcohol and oil.We use flax seed oil for omega 3. Juices are a big recommendation.Meditation is a big focus also.This all sounds overwhelming but after ten days residential we didn't find it hard at all.If you want to look at the web site it's www.gawlerfoundation.org.

(I take curcumin too.)
carolinem
Member
14 years ago
Hi - what was the reason for the hysterectomy? This has not been suggested to me at all. Thanks
carolinem
Member
14 years ago
Hi Jules

What can you tell me about he Gawler foundation and what are they recommending?

I have increased my intake of fruit and veg (Green Juices, carrots, kale, cauli, broccoli etc, decreased meat and dairy - more high omega 3 - oily fish, flaxseed etc) and started taking curcumin supplement - see curcumin.net

This I have done in an attempt ot do something to help myself.

Thanks
jules
Member
14 years ago
Wow it's great to read of others with TNBC being out there!
I was first diagnosed 2009 at age 50.Lumpectomy, sentinal node then axcillary clearance.

Chemo FEC x 3 Taxetere x3.

Radiation treatment, all of which I tolerated quite well.

Recurrance 2010 which culminated in a left breast mastectomy.

This year lympth nodes under my right arm enlarged and a needle biobsy showed TNBC but my right breast was clear.Lots of other lymph nodes in my chest were highlighted too.(I think I'm the patient my wonderful oncologist loses sleep over) She put me on a new chemo protocol of gemcitabine and carboplatin given two weeks running then a weeks rest.It was all a bit of a rough ride but after 9 treatments my scans have come back clear!!!

I am off all treatment at present and can't beleive how good it is to feel OK again. I am also BRACA 1&2 negative.

I also go to the Gawler Foundation in the Yarra Valley and follow their diet and lifestyle advice, so here"s hoping!!

Best wishes and blessing to everyone out there struggling with this.

Jules