Chris C

Hi, 1st post to this site. Dx April 15. Breast cancer Stage1 grade 3. Operated on WLE, margins clear and lymph nodes clear. Triple negative. ( that's the bit that scares me most). 6 chemo and 20 radio. Only 1 really bad episode on chemo. Otherwise coped really well and feel absolutely fine now. Have go back to work and almost back at full time. So all good. Except my head which sometimes is totally screwed. Convinced it will come back. Tell myself I have to live for today. Never plan too far ahead just in case πŸ˜” Am rambling, so much to say.

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  • What is triple negative pls ??

  • Triple negative is an aggressive form of breast cancer, only approx 15 % of all cancers. It will not respond to the usual hormone medication given fir 5 years after treatment. They say it's more likely to come back which is why they give very aggressive treatment at the start. I have just been told that they are going to start giving triple negative patients bisphosphonates to prevent any changes to bone cells. It's very new.

  • Must be hard on you all this aggressive treatment and of course the side effects I remember my consultant saying I might have heart problems in 30years after radio therapy I laughed and said I,d be very happy to have heart trouble in 30 years because I,d be nearly 80 and STILL GOING πŸ™Œ apart from problems with my teeth and bones I,m doing OK.....ramble as much as you like get it out there so much better than stewing over it here for a chat anytime x

  • Thanks Hun. 30 years would do me very nicely too. It's good to talk. 😚

  • 30 years sounds good here's to them 🍷🍷i,m 60 in September how old ru ?

  • Hi, I'm 58 in May.

  • So we got a while before we can retire lol I find being at work helps I do 32 hrs in retail it gives me a reason to get up in the morning and of course I need the money I,ve been a bit off for the last year but not cos of my bc but because I lost my husband Xmas 2014 . its been hard adjusting to being on my own after 40yrs married but family and friends are good but not there all the time they got their own lives to lead when I get a bit down I stick some music on and dance around the kitchen

  • Sorry to hear that. Hope you have lots of family and friends around you. I work 34 hrs per week for central govt. My husband and kids (23 and 21) have been fab but everyone everywhere seems to think that it's all over now. Where we know it's never over is it. We just have to learn to live with the fear as best we can. Lovely to talk to you. Keep in touch 😘

  • No not over but on the back burner stay healthy stay happy here for a chat anytime x

  • Yip me too. I have the achy joints but that's my meds. Small price to pay so not complaining. Other than that, fighting fit and back at work x

  • Hi Chris, have you had any bone scans? I have not been offered anything. Your explanation of TBNC is excellent X πŸ’ž

  • No nothing at all. I did ask but was told no need. Considering paying privately maybe sometime in the future. Just for peace of mind.

  • I hear all the time of other patients obviously with the hormone medication that they have bone scans, I feel maybe we are just put on the back burner. Anyway onwards and upwards, keep in touch, good to chat x

  • I have a bone scan next month. Just because my meds are putting me into menopause and the risk of bone thinning.

    Positive with modern meds I will be fine. No osteoporosis in family so that's a help x

  • Hi Chris

    I was diagnosed with TNBC in July '15 & had a Mastectomy in August, Grade3/Stage3 but no lymph node involvement, however there was a lot of 'activity' in the Breast & multiple DCIS of the same type of TNBC so it was followed up with FEC/T Chemo though the Taxol was stopped after the first dose as it made me very ill, so l just had four in total.

    I'm also due to start Zolendronic Acid after to prevent recurrence in the bones. I'm already on weekly Alendronic Acid as I'm on long term steroids & they have caused Osteopenia in my lower back. I do however want to ask more questions before I start the Zolendronic Acid!

    Have you started it yet?

    My biggest joy at the moment is my eyelashes are back & almost fully grown!

    Best Wishes

    Angela

    PS I had a clear routine Mammogram in April

  • My eyelashes are back too and my eyebrows. Hair is coming along. Do will continue to where wigs. I start on the bisphosphonates in March. They think it will be 4 injections over 2 years. So every 6 months. No worries. My 1st mammogram is sometime in April and then the consultant results 18/5. Will be glad to get that over.

  • Apologies for predictive text. Should be wear wigs. Lol

  • My first mammogram is first week in March. Will be worrying but confident it will be fine. Oncologist gave me a thorough check in January after my treatments were finished. She was happy and discharged me from clinic x

  • It does wreck your head that is for sure. Well done though with getting on with life. All the best x

  • Sure does. I have come to the conclusion that it's the same for anyone with a serious illness. All you can do is live your life to the fullest. Enjoy each day. Cause worry gets you nowhere and what will be will be. In a way and on a very positive note we have been given a gift. It has made us value what we have and appreciate life more than we ever could before. And sorry if that's abit over the top and made anyone sick πŸ˜†

    Best wishes to everyone ❀️

  • You are absolutely correct. I had a bilateral mastectomy and lymph nodes removed six weeks ago. One side is very hard and I keep thinking it's back... It's hard not to think like that though. I was told two weeks ago that I am likely to need more chemo as the last chemo had not shrunk them enough and more lymph nodes tested positive so to ensure that no rogue cells have spread anywhere else they are possibly giving me three more sessions. I find out on Tuesday then radiotherapy... The joys xx

  • Fingers crossed for you x

  • Hope today went ok and you are alright. 😘

  • Hi there. Well I went in and had the needle aspiration. And told my nurse that I had you and others from this form with me in my pocket :) I then had an appointment with the Oncologist. Unfortunately results from the tissue they sent off from my mastectomy revealed a lot of cancer. There were more lymph nodes infected and it was confirmed without doubt as triple negative. As a result it is now more than likely that I now have cancer cells too small to be detected by scans travelling around my body. As a result I will be having four sessions of a very strong chemo, once every two weeks. I will then have my radiotherapy with a milder chemo running in tandem with it. I have to have another bone scan and a heart scan as one of the meds cause heart problems. I won't be on any meds after the chemo and radiotherapy as there is nothing that tackles triple negative cancer and all faith is put into the chemo. After all is over, I stand a 20-30% chance of it returning in the space of 5years. After that if it has not returned the chances of it doing so is slim. So it's a tad worse than I thought it would be, but I'm a fighter and intend to beat this. I'm having heart scan and pick line inserted on Thursday and also my appointment with radiologist on the same day. Chemo may be starting a week on Friday. I will beat this πŸ˜‰

  • I wish you well, keep positive, we are all here for you, as you said we are in your pocket. Sending you love πŸ’ž

  • Okay so you're going into battle 😬 I'm TNBC too and they are putting me on bisphosphonate injections to stop any bone cell changes. The odds are in your favour so be positive. I follow the Cancer Active site which has so much info and brings all the research into 1 place. Lot about immune system and what you can do to boost it. Similar to what's in the news.

  • Hi, I have recently been diagnosed grade 3 triple negative. I start my chemo on 3/3/16. I understand your fears for the future. I wish you good health for the future x

  • I honestly didn't find the chemo too bad at all. Make sure you drink gallons of water to flush it though your system. You won't feel bad the whole time. I was just 3/4-5 days each time. So that's at least 2 wks between when you should feel ok. I also took plenty of naps. 10 mins a couple of times a day. Take care Hun. ☺️

  • I know what you mean about head being screwed up! It's the hardest thing to live for today but it early days yet. It's not a year since your diagnosis and everything happens so quickly it like a whirlwind with no time to digest everything and take it on board. Every cough, ache and pain can send you into a 'what if' but like me you had no lymph node involvement so we must take that as very positive. Good luck and be kind yo yourself!

    I am now almost a year since final chemo. I had mastectomy then 15 sessions of radiotherapy. I am still feeling the physical effects of chemo ( well I think I am) my muscles and joints ache badly at times making me incredibly tired. Sleep is the only remedy and that can be allusive! I am 66 so don't know if that is a contributory factor. I am not an old person though! I have an active life, when fit and young outlook on life.

    Anyone else out there feel like me? Love to hear from you.

    Linda

  • Hi Linda, I think I just got lucky with the treatment. Apart from the 1st taxol I really sailed through it. And now to be honest I feel no different than before it all started. Except for the fear of course. I have changed my diet and have cut out all dairy and added sugar. And I cook everything from fresh. If I go out for a meal I have anything I fancy but not over the top. Seems to be working. My energy levels are pretty good. Having said that if I'm tired I could sleep on a clothesline as my Mum used to say but generally 5/6 hrs is my usual with maybe a 20 min nap when I get home from work. Sending good wishes to everyone 😘

  • Thank you for taking the trouble to reply. I agree staying positive is so important and living each day as if it's your last is a sound philosophy, if a bit over the top! But let's try it!

    Good luck and stay happy everyone!

  • Hi honeys I am 61, 9 years post diagnosis and treatment, keep dancing round the kitchen whenever the 'what ifs' get too bad. Your life does come back but of course there is no guarantee that cancer doesn't, and it can reappear quite a long time after the 'ten years clear' point. So just live your life to the max while you can. Love to all this Valentine's Day

  • I was operated on March then April for margin clearance. 6 chemo aswell and 19 radiotherapy. I am back working full time after my 4 week phased return. Feeling really well and trying to be positive. Found out Friday a friend has a second cancer so that made me feel down then the what ifs started going round in my head.

    Not letting it torture me. I got discharged from oncology clinic so now it's yearly mammograms for 5 years.

    WE WILL DO IT!!!!

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