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cazza36
Member
since
27-06-2013
48
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3
Hugs
21-01-2016
12:52
2 Hugs
Hi Sarah, I was diagnosed with secondaries in my liver (today - well its after midnight - so yesterday now i guess). i think its not quite sunk in yet - im just doing practical coping things right now (who to call, ordering new headscarves etc). I obv cant answer any questions about length of time etc as ive no clue myself - but i can tell you what my oncologist told me: It's incurable BUT you are not dying. there are many different treatment options and if one doesnt work they try another. there are so many things available. her plan for me is: 3 cycles of paclitaxel chemo, then scan to see if it has worked, then if it has 3 more cycles - then hopefully return to work. so obviously she thinks i have time. hope this helps (((hugs))) from one newbie to another x
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21-01-2016
12:42
Hi Stephanie, Thank you so much for your lovely reply. Oh sounds like paclitaxel might be ok. Its wonderful that its working! Hope it does for me too. When were you diagnosed with liver mets? My aunt is also having paclitaxel for liver mets. She was diagnosed in april 2012 with bone mets but only lately with liver mets. shes coped ok with it but it makes her very tired. unfortunately for her its not shrinking the liver mets - but nor have they grown so they are deciding in the next couple of weeks if she has to change. she has it weekly also - every week - no breaks. they are going to try me on 3 weekly because im "healthy". other than the tamoxifen ive not been on treatment since may 2013 so my liver is otherwise strong - but they said if my body doesnt cope with it i'll also be going on weekly - but i dont give a **bleep** as long as it works. i know its not curable now - but i am going to stick around as long as at all possible for my son. (he was 7 when i was diagnosed with primaries) So lovely to hear from you (((hugs)))
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20-01-2016
11:31
Hi all, My name is Caroline Today i was diagnosed with liver mets. I turned 40 eight days ago. Happy birthday! You have stage 4 cancer! I was diagnosed with primaries in august 2012 aged 36 and had mastectomy, chemo, radio, tamoxifen, preventative mastectomy (with double reconstruction), oophorectomy and hysterectomy. doesnt seem to have worked too well unfortunately - but at least i gave it my best - which i'm ready to do again. I start Paclitaxel on tues 2/2/16. Bring it on coz i have a 10 year old son to live as long as i can for. So thats me. Please introduce yourselves coz i want to reach out to others in my position. Oh and if you have been on Paclitaxel can you let me know how youre getting on. xxx
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19-03-2015
12:40
Thanks everyone. I think that I'm going to have to save up. I was planning to save a deposit for a house - but this is more important. My arm is steadily getting worse so I don't think I have an option.
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15-03-2015
10:22
Hi ladies. Those of you who have had this surgery recently - did you go privately? I had heard it had lost its NHS funding. My lymphoedema is getting worse, painful and as for getting clothes - nightmare!
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16-10-2013
12:18
Hi, Yes i knew it was too. But i'm not on here every day so have just seen your post. This was shared on facebook and i thought it was really good http://mbcn.org/developing-awareness/category/13-things-everyone-should-know-about-metastatic-breast-cancer/ My Aunt was diagnosed with bone mets in april 2012 and i was diagnosed with primary breast cancer in august 2012. The two are so different!
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01-10-2013
12:17
My friend's dad said to me: You look great - when are you going to stop sponging off the rest of us and get back to work? I HOPE he was joking. Im not sure he was. I had not long finished radiotherapy and was living on painkillers due to pain caused by chemotherapy, radiotherapy. tamoxifen and menopause (thank you chemo). Looking after my 7 year old was exhausting me. I had no energy and just muttered about having fatigue and needing some preventative surgery.
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29-08-2013
08:41
Sandy, You have to pay for your tattoo? Where do you live? I had my Mx in Bristol where i was told that the breast nurse did the tattooing, and now i live in Belfast and its one of the doctors who does the tattooing. are there any charities who could help you?
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27-08-2013
11:38
Hi Suzie, Because it is contained within the ducts there is no need to check the lymph nodes as it cant have spread there so please don't worry about that. My Mum had DCIS and had a lumpectomy and radiotherapy. 3 years later she had DCIS again in the same breast so had a mastectomy this time. i personally believe you did right having a mastectomy. The fear of it coming back is something we can all relate to. you never want to hear those words again - but every lump or bump sends our head into a complete tizz! taking the tamoxifen and attending for regular mammograms for the other breast is the best way to quiet the worry of recurrance Hope this helps in some way xxx
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27-08-2013
02:34
Hi Beverley, I also had a left mastectomy on September 2012 but I had an expander fitted at the same time. Its a little painful at first because it is behind the muscle (same as the permanent implant will be) but its fine - I was allowed to drive after 3 weeks. When the expander is expanded it hurts again for about a week. I had to have mine drained because my wound hadn't healed - but that isn't normal. I am seeing my surgeon mid September about having a second mastectomy (due to a strong family history) and reconstruction. - so am soon to have the thing expanded again - we can stretch together 🙂 I'm not sure I want the bud made for the nipple reconstruction because I don't want it showing through clothes - but I do want the tattoo so I am not reminded of this every time I take a shower - it will at least look normal. I will ask the surgeon if this is possible. keep posting what you decide and how it is and I will too xxx (I had my mastectomy in Bristol and am now living in Belfast - so not in Nottinghamshire I'm afraid)
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26-08-2013
06:47
Thanks for you comments Revcat - lovely reply 🙂 i LOVE it - NEDness 🙂 I was calling it "clear for now" but i prefer NED 🙂
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26-08-2013
06:38
Hi Lola, YES! I definitely had that problem. I couldn't get out of bed in the morning. My back and legs were so painful. I had FEC-T and the T was harsh!!! I found the opposite though - I was slightly better when I loosened up. Now 6 months on I still have sore knees and tendons but my back is fine. I am fine apart from stairs 1st thing in the morning, walking after I sit down for a while, and dancing (I'm a dancer lol). My oncologist thinks its the early menopause that is causing the pains now and not the tamoxifen or chemo. I would suggest that if it doesn't start improving soon you should speak to your oncologist. They will have come across this loads and will know if you need a scan. Hope that helps xxx
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26-08-2013
12:30
On the 20th August 2012 I was diagnosed with breast cancer aged 36. I do have a strong family history - but all over the age of 50, and I have had lumps before which turned out to be cysts - so I hadn't expected the diagnosis at all! I am a single Mum as my marriage had broken down in 2010, and was living in England so I had to move back to N Ireland and in with my parents for support during treatment, and I had to sell my home as my sick pay would run out before treatment finished. I am a dancer and after surgery was unable to do this for months(still can't much because of pain). Cancer changed everything! Then of course there was the hair loss, mastectomy, pains, nausea, depression.... For a long time if felt like I couldn't come through this - but I did. Then in July 2013 I found a lump in my neck and I thought that it was back, thankfully it wasn't. My CT scan came back all clear, I got the results on the eve of the anniversary of my diagnosis. Relief doesn't come close to describing what I felt. Surprisingly I didn't feel like celebrating - I just cried and then got some much-needed sleep. I now feel like I am starting to get back on my feet. I've got a new apartment which I have done up, and I am looking to the future with a new zest for life and a new perspective. I still have to have another mastectomy and reconstruction, and I have to take tamoxifen - but I feel like I've done it - I am now a survivor. That doesn't mean I wont still panic with every lump, bump or test BUT for now I am winning. I am so grateful to all my family and friends who helped me through, and I am grateful for the new friends and support groups I have met along the way. What I'm trying to say is - if you have just been diagnosed or are going through treatment - it will come to an end and life will go on. There is light at the end of the tunnel - no matter how far away it might seem xxx
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26-08-2013
12:02
can you get different colours? all my hair has grown back except my eyebrows which have only partially grown back and i still have to draw in 6 months later. I don't want too dark though x
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24-08-2013
12:51
Hi Lucy, It does sound like her anti nausea medication isnt strong enough. i would contact the oncology helpline with reguards to her diabetes too - i'm sure they have come across type 1 diabetes and chemo before and will be able to advise her best. I threw up and was dizzy for about 24 hours after my first chemo - but although i felt very ill after the rest i was never physically sick again and as far as i know my anti-emetics werent changed - so maybe its just the shock to the system of the first one. not sure if this helps or reassured - but i wish her all the best with her treatment. caroline x
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23-08-2013
10:41
Hi Jaydun, I have been really lucky in that my surgery has been brilliant. Where i ran into problems was when i had an infection at nighttime during chemo. The out of hours service told me to come to the clinic for a certain time - then made me sit in a corridor with other patients - mostly coughing and infectious for over an hour, then when i saw the doctor she gave me an antibiotic and told me to take paracetamol. when i explained why i shouldnt she seemed totally unaware. I would have thought that an out of hours doctor should have been trained in the basics
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23-08-2013
12:12
Yes its a tricky one! With aquaintances i would be brief but honest. with friends and relatives i told them exactly how i was - if they didnt want to know then they shouldnt have asked. 99% of them were genuinely interested. the other 1% - well maybe its just too scary for them that one of their peers has cancer (mid 30s). Say only what you are comfortable about saying to who you are comfortable saying it to. its ok to say something like "not great but id rather to not talk about it" Its your journey, its exhausting - so you chose how much and who you tell xxx
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23-08-2013
12:00
Just to let you all know - I got my results and its all clear! The lump was a distended vein and my organs are all clear 🙂 Thanks for all your wishes xxx
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