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

Deeay
Member
14 years ago
So sorry Julia and Caroline to hear of your battles with the dreaded TNBC. All we can do is put our faith in the Oncologists who treat us. I feel under treated too. I can't have radiotherapy a second time so after my chemo finishes at the end of October, I'm 'on my own.' I worry about it coming back, how working will affect my chances and wonder how I can monitor my health. I guess the best advice is to think about life, not cancer, and to take one day at a time. Make the most of each day. It's all easier said than done. At least here, you know that others know exactly how you feel. So all I can say, is don't give up the good fight, because there are new trials and new drugs on the horizon for TNBC. Julia, have you asked if you can be part of a trial? I asked my Dr and he said only people who have secondaries from TNBC, so you might qualify.
J1nette
Member
14 years ago
Hi Julia Oh man what a rough time ( to say the least ,eh ). I'm tnbc 1/3/11 n just coming to the end of radiation so I haven't got any wise advise for u . During my chemo I've meet others who were having ongoing chemo ( 10 yrs ! ) . One lovely lady is doing a course part time . I guess it depends on how the chemo affects u . Keep up the good fight . It's crappy though eh! In our prays
carolinem
Member
14 years ago
Hi, the second round of radio was in the area that had not had radio first time - first time was just the breast - second time to armpit and shoulder area. They cannot do two lots of radtio to same area. Given the surgery has not removed the nodes in should collarbone area that showed up in pet scan the consensus seems to be that my cancer is treatment resistant and they would prefer to keept he taxane chemotherpay up their sleeve shoulod something else pop up - so the PET CT is probbably necessary for me - also seems possible that breast cancer marker CA153 may be an early indicator for me if curren tblood test result returns to my earlier levels - if it doesnt then it isn't - if it does then we will do that every three months and if it jumps then a PET CT is indicated it seems. Anyway getting on with life - off to get hair trimmed. Have a good day. Caroline
Deeay
Member
14 years ago
Hi Caroline, You poor thing! I sympathise because the most frustrating thing about triple negative BC is the lack of followup after initial treatment. I'm surprised you were able to have radiotherapy the second time. I've been told I can't, and to just have Chemo. Is there a reason why they are not giving you Chemo this time? I had AC the first time and also Radiotherapy. This time I'm having Docetaxol (Taxotere) and Carbolplatin x 6 but no Radiotherapy. I've also considered having a hysterectomy but I think I've heard this is more for ER + people. I also had a lumpectomy in the left breast first time around and when the second lump appeared in the same breast (same place!) I elected to have both breasts removed too. Did the PET scan show tumors in the central chest area nodes? Can they do radio on these? One day at a time. That's what I'm trying to do. It's hard. So hard sometimes. Where abouts are you Caroline? I'm in Sydney. Is there a good support group you can go to? Let us know how you go. Thinking of you, Diane
carolinem
Member
14 years ago
I was first diagnosed with triple neative breast cancer in December 2009. A small lump in my left breast - lumpectomy and Sentinel node biopsy that showed lymph nodes clear. 4 rounds of AC chemo then 25 radio treatments after chemo completed.

June 2011 I developed a lump in my left armpit - sure enough - cancer - axillary node clearance of left armpit - followed by rad iation to axilla and shoulder area as a PET CT showed something under the left collarbone - assumption at the time was that it was an inflammatory response to surgery....

But - late July I found another lump in my left breast - sure enough - more cancer - mastectomy of left completed 9th September - plus I elected to have the right also removed. Surgeon also went digging and removed the high nodes up under the collarbone that showed up in the CT PET scan

Now - pathology seems to suggest that all of this is related to each other.

Assumption seems to be that do nothin else at this stage - so tI guess this is good and bad - appointment with oncologist to understand more next week.

Just have to get on with life and enjoy my family and friends.

I am interested in the comments about hysterectomies though?? What is the connection or reason?

Caroline
carolinem
Member
14 years ago
I was first diagnosed with triple neative breast cancer in December 2009. A small lump in my left breast - lumpectomy and Sentinel node biopsy that showed lymph nodes clear. 4 rounds of AC chemo then 25 radio treatments after chemo completed.

June 2011 I developed a lump in my left armpit - sure enough - cancer - axillary node clearance of left armpit - followed by rad iation to axilla and shoulder area as a PET CT showed something under the left collarbone - assumption at the time was that it was an inflammatory response to surgery....

But - late July I found another lump in my left breast - sure enough - more cancer - mastectomy of left completed 9th September - plus I elected to have the right also removed. Surgeon also went digging and removed the high nodes up under the collarbone that showed up in the CT PET scan

Now - pathology seems to suggest that all of this is related to each other.

Assumption seems to be that do nothin else at this stage - so tI guess this is good and bad - appointment with oncologist to understand more next week.

Just have to get on with life and enjoy my family and friends.

I am interested in the comments about hysterectomies though?? What is the connection or reason?

Caroline
Merilla
Member
15 years ago
Hi J1nette, I cant find my info on Rayderm but if you google it shouldnt be hard to find, I found it very helpful & took away the intense burning. I will keep looking though as I still have the oil but just cant find the other info...
J1nette
Member
15 years ago
Hi Dee

What did u decide to do? Thinking of you !
J1nette
Member
15 years ago
Hows it going Jacqui ?

OK out with the info on Rayderm ! How are u finding it ?? Where can we get this ?? I,m off to Sydney early August for radiation ( 33 ) at RPA . Anyone want to meet up ??
tt
Member
15 years ago
Hi,

I must have been diagnosed at a similar time - April last year. I had a lumpectomy with axillary clearance, 6 months chemo, 6 weeks radio. Now trying to get on with life. I am considering a full hysterectomy in a few months. When did you have this and how was the surgery? I'm also in Perth - maybe we could chat?

Tanya

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