Triple Negative Breast Cancer

[Tessa61]

Hi All, This is my first time on any sort of forum. I would like to know if there is any one out there with the same type of breast cancer as me. I have Triple Negative Breast Cancer. I will be finishing my treatment on Wednesday this week. I am very happy it has been a rough 7 months, but I am also a little scared because there is no more treatment for me. I just have to look after myself and hope for the best. My cancer was under 2cm and node negative. Any one out there a Triple Negative survivor and what treatment did you have?. Although my Oncologist came highly recommended I thought maybe I should get a second opinion. I am very worried. Any advice welcome.

[cherrybird]

Hi, my sister has recently been diagnosed with triple negative breast cancer. She is up to her 2nd cycle of chemo. I don't remember the name of the drugs she's on sorry, one of them is red though and its made her hair fall out really quickly. Whatever it is, if you've had it to I admire your bravery. She got really sick in her last cycle, to keep going for the whole seven months is crazy and very brave. She had surgery on the roughl 3cm tumour and the scan after her surgery showed no visible cancer anywhere. Despite this, her surgeon reccommended 6 cycles of chemo and then a high number of radiation treatments to increase the odds of no recurrence. They reckon that after all that gruelling, super hard treatment, the cancer is not likley to come back for at least 20 years. It sounded to me like a juvenile criminal who gets a tough sentence to discourage them from re-offending. ;) Getting a second opinion is a good idea if you are concerned about anything at all to do with cancer. Two heads are better than one, not every oncologist approaches things the same way, you may need to find one who has the same approach as you would like to have and at the very least you can sleep a bit better having chased it up. Fear about finishing treatment and what happens after is very normal. Talk to you GP about how worried you are, maybe they know a counsellor who specialises in chronic illness you can chat to. The niggly thought about if the cancer will come back (if it's even gone away) and will treatment work in the future is a hard thing to live with, talking to someone about how to live a full and happy life in spite of that can really help keep it just a niggle and not an all consuming pain in the ass.

[willow]

Hi I was diagnosed with Triple Negative Breast cancer in March '09 and finished treatment in November '09. I had six cycles of chemo and six and a half weeks of radiation and I was very sick most of the time. I am pleased to talk with you as I also do not know anyone with this type of cancer. It can be very lonely and definetely scary not being able to talk with others in this situation. I eventually went to see a pyschologist as it was difficult dealing with the fear and uncertainty. I also decided to get a second opinion as I thought maybe my oncologist hadn't given me the right treatment. The second oncologist confirmed that all that could be done had been done. Soooo for now I just have to get on with trying to put the last year behind me and enjoy my life as much as I can on a day to day basis. And believe me it does get easier. It is important to look after yourself now that treatment is over - allow yourself to heal both mentally and physically. It takes time so don't stress if progress seems slow. There is a light at the end of the tunnel and life can again be good. Take care of yourself and keep in touch on this site - it is a great place to find support and understanding from so many lovely people who really do care. Kind regards, Willow

[Tessa61]

Hi, Thanks Cherrybird and Willow. It is really great to hear from someone in the same boat as me. I finished all my treatment today and it feels really weird. For seven months it's been all about the treatment and coping with kids, finances and side effects as I am a single mum of three teenagers. I am really tired and quite burnt but happy that that part is all over. I left the hospital with a big bag full of creams and dressings and went straight home for a lovely afternoon nap. I am off to my wonderful GP tomorrow for a long chat about the next stage of my journey. I am feeling a little scared. I know it is normal to feel uncertain etc at this stage but I have read that the risk of reoccurence is much higher with Triple Negative but my Oncologist said to me, the last time I saw him, that I would have to be very unlucky for this to worry me again. I feel a little conflicted. Obviously I want to believe that I will be OK. . There is something that I noticed, in both your cases 6 cycles of Chemo were or are being given. I only had 4 cycles of FEC. I wanted 6 but my Oncologist said that would be over doing it. Cherrybird, I had the red devil as well and my hair fell out 12 days after my first treatment and it is growing back very grey !! it was light brown before. Willow, what are you doing to look after yourself? Have you got any tips? I am trying to eat as healthy as possible and I am taking heaps of vitamins. When I feel stronger, I will start walking and yoga. I have been working full time all the way through my treatment, when my health permits, so I am tired ALOT! Also, did you have lots of side effects from the Chemo and how long did you take to recover? I still have problems 3 months out. I have bad Chemo brain, tummy problems and a really dry mouth as well as residual neuropathy. Once again, thanks ladies. It is nice to have someone to chat to. Cherrybird, I hope your sister is OK. tell her to hang in there and I wish her all the best. Kind regards Tessa61

[willow]

Hi Tessa61 I too have heard that this cancer has a high risk of recurrence but I try not to focus too much on this fact. I had the red chemo and lost all my hair too. (when it came back it was greyer and very very curly) I was very sick and had lots of gut problems and my mouth was ulcerated a lot of the time. I had thrush that was in my mouth and all the way down my throat into my gut. I was very tired pretty much all the time and lacked energy -the total exhaustion was really hard to deal with. I used to get the shakes if I even walked up the stairs some days. I couldn't sleep at night and cried a lot....I seemed to get just about any symptom possible. Stomach pain and pain pretty much all over my body. And the nausea was terrible causing me to stay on the anti nausea drugs for longer that normal after each cycle. My veins seized up and a couple even became infected. I had terrible headaches and used to have nightmares a lot. I finished chemo in August and can say that I really only started to feel a bit better in December (but only a bit) The exhausted feeling plagued me for months and I can even have that happen out of the blue now. I had very painful joints for months and still get a painful back and find getting up out of a chair still hurts. The pain in my ankles in the mornings seemed to take forever to pass and I can still get it a bit if I am overtired. I think my body regresses if I allow myself to get tired now - it tells me to get more rest. I have really started to notice a difference since May. So I suppose it has taken about nine months for me to be able to feel more normal again. Don't take this as gospel though. Everyone is different and everyone has different side affects. I was not able to work during my treatment - so already you have coped better than I did. I don't know why I had six cycles of treatment - did you have 33 radiation treatments? As far as points on looking after yourself - I don't really know - when I first finished treatment I was determined to change my lifestyle completely -but as so many say on this site, it is easy to slip into old habits. I try to eat well but I also enjoy myself. If fish and chips are on the menu or we feel like a pizza night I will have it. I also love cheesecake and chocolate and now I can eat it and enjoy it without feeling too guilty. But at the same time I do try not to eat too much. Today at work I was offered a box of smarties and I said yes...but I felt bad after I had eaten them. Really silly, I know it is ok to eat these things from to time. I also was told by someone I shouldn't drink alcohol - but I have had the odd glass of wine lately and I am sure that is ok as it helps to relax you. You need to find what you feel comfortable with but don't cut out all the good stuff.....you need to enjoy life too. I hope you are enjoying the freedom of no more treatment and being kind to yourself. Take care, Willow xo

[Jac999]

Hi Tessa 61, Willow and Cherrybird. Just thought I would let you know that I too have been diagnosed with Triple Negative Breast Cancer in January 2010. I had 4 rounds of Ac Chemotherapy also known as the Red Devil by many of us. I had a Radical Masectomy in April with full Lymph node removal and following this I had 12 rounds of Taxol. I have just completed 25 radiation treatments out of 30. Its a battle with the last few radiation treatments as my skin is not holding up too well. My surgeon, ocologists have said that I have a very good chance of keeping this cancer in remission and particularly if I can go 3 years without reoccurance and if this occurs then my chances are the same as any breast cancer patient. All of the medical specialists that I have seen have said that Triple Negative cancer usually responds very well to chemotherapy. From my understanding they treat this cancer very aggressively which gives extra insurance for non reoccurance. Lets hope....I wish you all good health and hope I get the chance to chat some more to you all.

[tinawu76]

Hi Jac999, Tessa 61, Willow and Cherrybird. I am one of the rare case. I was diagnosed with Triple Negative Breast Cancer in Dec 2011.I had Full Lymph node removal and also lump removal. Since Feb 2011, I had 3 rounds of FEC and 3 rounds of D. Now I am doing my Radiation Treatment. I will have 30 treatment as well. I have seen a physiologist from time to time to just release any form of stress. And also I have always worked throughout the whole treatment. I find if I am home, I always worry about my rare case. But obviously we are not alone. My surgeon and oncologist, strongly believe I am doing very well in terms of recovery. Let's hope we all good health. I am in Brisbane, if any of your guys need to have a personal chat. Email me. I am really happy to know I am not alone.

[willow]

Hi I hardly ever get on this site anymore so don't know when you wrote your msg. I am nearly three years post diagnosis and am feeling good. I used to worry all the time about a recurrence and about having Triple Negative cancer but these days I don't think about it nearly so much. I know quite a few people with breast cancer but none with TN. I will check here from time to time to see if you have sent a msg now that I know you are out there. 🙂 I hope you are doing ok now. The physcologist is a good idea - I saw one too and she really helped me to stay focused on what was important and to help me realise that I still had a lot of living to do. Good luck with your journey and if you feel the need to talk, ask questions or just vent, please write again. Take care, kind regards, Willow xo