I have just had a mestectomy to my right breast after DCIS diagnosis. I also had DCIS in the left breast Nov 13 so this has been a double blow.
My results came back this week and I cannot believe it but there was a 1cm tumour hiding in the centre. The sentinel node was diseased but the 2nd node wasn’t.
I have been advised to have 6 doses of chemo and herceptin. I have 3 sons (16,12,9) and I am so worried about them. This will be a huge blow to them as the word ‘chemo’ is SO scary. I haven’t yet told them the news.
Anyone out there that can hold my hand and give me the strength I need to get through this? I am 48 years old and a very positive character but am struggling to sleep or think straight.
Hi Rafi, you will find lots of support on here from people going through the same thing, I was a complete wreck when diagnosed on 13th February and would not have got through the last few weeks without this forum. I have got to have chemo and herceptin too. My cancer is also in my lymph nodes but ct scans show no spread elsewhere. I have four children and they have handled it quite well up to now but I still hate the thought of them seeing me go through chemo. I’m sure your children will be ok too, they seem to handle things better than us adults sometimes.
I am having my chemo first before surgery and start on 4th March. If you will be starting in March there is a ‘starting chemo in march 2015’ thread you can join to get more support. You will not be going through this alone, we can do it together. Hugs to you. Janey xxx
Hi I have had 4 chemos now, 3 fec and into docetaxel and pertuzumab and herceptin for 3. I had my first one of this 10 days ago and am feeling really tired still, but that is probably because I’m not sleeping with night sweats ever two hours. Depends on what drugs you are having? Chemo is doable but hard on you physically as well as mentally, I found I was very emotional after a few days of feeling awful and although very supportive husband and son to look attend it is the days of being alone which hit hard. I decided you have to give into the side effects and know that in a few days you will feel better and feel human again. Let me know what drugs you will be on and if the same I can see you through thneside effects. I have to have mastectomy yet so you can help me with that as I am scared stiff of it. Your sons if they are like mine will look stuff up on Internet so may as well tell,them most of it anyway. Always remember you may not have the same as anyone else and hair loss may not happen to you, it has me but a wig and head gear has made that ok really. The other side effects will be manageable with help which you will need, theworstbthing is the extreme fatigue which accumulates with each chemo but there are times in the cycle when you can plan stuff to do and be normal for a week or so in between them. Hope this helps a bit but ask me whatever you like and I’ll try and help. Have you had reconstruction at all? Best wishes to you xx
Hi Rafi, my heart goes out to you as this experience is so scary and all thought consuming. I was diagnosed with DCIS last Sep. I had breast conserving surgery and I have just completed my 5th cycle of FEC. I have 1 more to go then radiotherapy and hormone treatment for 5 yrs. I have a husband and 2 children. Like you I considered myself as a very positive person but was terrified about how my kids would deal with this. My poor daughter’s 18th birthday was the day before my surgery. Everyone’s experience is different and every family is different but I thought sharing some of what we did may help or be of some comfort? I was very open with my children about all aspects of treatment, I offered the literature I’d been given if they wanted to read it (rather than access dubious information on the net!). We talked about the hair loss before it happened, joked about wigs together and tried to inject a lot of humour into this metamorphosis. The most important thing was getting past the word ‘chemo’ - seeing it for what it is, just a description of being treated with certain drugs. The emphasis was on the importance of these drugs working and naturally they would need to be harsh and therefore cause some nasty effects. Yes, I’ve felt nauseous, been tired and lost my hair but generally life at home has remained pretty stable and the kids are still caught up in their in their own stuff. This is a long journey as you have already experienced but you and your family WILL get through the chemo aspect in the same way you’ve clearly dealt with everything up to now. Hugs and lots of love to you xx
Thank you so much for responding. I have not yet sussed out what I am doing on these forums and I hadn’t realised anyone has repiled.
I feel very tearful reading all your lovely words of encouragment and I know you really understand how I feel
I am a very lucky lady who has the most incerdible network of friends and they have already started a rota for my mates to be on call should I feel alone or sick. They also want monthly nights out but no one can attend unless they wear a wig!
I am relieved to hear that family life can remian stable. That’s what I need. My big boy took the news terribly yeterday ( I was upbeat and positive) but I am so close to him. He wasn’t scared of the baldness but saddened that I have to do this. I decided not to tell the others just yet.
I still haven’t slept and once I do I wake up in a panic worrying aobut the next few months. I suppose once I’m on the chemo train it may become easier? Any help for wig suppliers too? There are so many to chose from.
Not sure where you are Rafi but in my area I got contact details and a voucher for an NHS wig as soon as I saw the oncologist (after my surgery). The organisation were absolutely fantastic and it’s an extremely good quality wig. In fact everyone who knows me can’t believe its a wig. I’ve bought a couple over the Internet since… HUGE mistake, they don’t fit properly and nowhere near the quality of my NHS wig which was individually cut and styled to my face by the supplier. I’m sorry you had the difficult task of telling your son, my 19yr old son was very tearful when I told him, so difficult to see your adult son in tears. He’s adjusted now and coping really well with the journey as I’m sure your son will too in his own time. You know your children best and know when and how much information to give. You’re doing great! Hugs xxx
My hair is synthetic but looks so incredibly real, my own hair never looked as good!! It’s hard to imagine not thinking about this 100% of the time but it does ease off. I found that once the chemo started I got into a pattern of the cycle and had days and sometimes a whole week where I felt more ‘normal’ and did ‘normal’ things like socialise! I’m less frightened now as almost at the end of the chemo bit but I have started to worry a little more about the long term. I think this is a natural response in processing the enormity of what’s happened as it’s felt like a whirlwind so far. It’s hard at times to remember life before all this…don’t know if that’s the same for you? There’s lots of invaluable advice and info regarding coping with chemo on this forum but it’s so different for everyone it may not be helpful to give you a list of things that helped me but if you want to ask anything along your journey please don’t hesitate. Rachel xxx
Hi everyone
I’m new to this thread but popped on to wish you all well with chemo. I’m half way through treatment at the moment having 4 fec and 4 t. Mrsrichy I was also dx with tn in October 14 and due to have my 3rd docetaxol on 13th March , i will have surgery after followed by rads, my treatment is at North staffs hospital in Stoke. xx
Hi everyone,
Just wanted to pop in and say there is always hope and a light at the end of that long tunnel !
I was diagnosed in september 2013, finished my six rounds of horrible chemo with two overnight stops and one week in hospital with nuetropenia, had two ops as i had lymph node involvement and 4.5 weeks of radiotherapy that finised in september. My surgeon declared me ok a week before christmas and my next visit for a check up is june ! Yes it was horrible, i was sick and had all of the yucky side effects but chemo is the worst bit and it does honestly get better my chemo was worth it my lump went from 4.5cm to 1.0 cm so it did its job ! I had beautiful bottom length hair before i started, was only bald for six months and i now have a thick head of different colour curly hair:) Im 41 now, i wont be able to have children l, im on tamoxifen for the next 10 years but im here and alive and starting to feel well again . I followed everything the hospital said, had a great diet, watched lots of funny films and tried to stay postiive through it, it feels surreal already and time has flown.
Hang in there ladies, have a count down for each part of your journey, celebrate at the end of each bit, be positive, dont be too hard on yourselves you can get through it
Best of luck and lovely wishes to you all
Kay x
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Rafi my kids are 9 and 12 and we sat them down and told them the week before my mastectomy. The 12 year old asked a few questions but the 9 year old took it in her stride. They have to know why you’re in hospital and what chemotherapy is so they know you are getting better but also understand when you’re tired or upset. School have also been brilliant. All their teachers know, again they can support the kids if we’re having a bad week.
I’ve been good capping, and although my hair is thin if you didn’t know me you wouldn’t guess I’ve had 10 doses of Chemo since October. Its worth asking about it.
my chemo was worth it my lump went from 4.5cm to 1.0 cm so it did its job ! I had beautiful bottom length hair before i started, was only bald for six months and i now have a thick head of different colour curly hair:) Im 41 now, i wont be able to have children l, im on tamoxifen for the next 10 years but im here and alive and starting to feel well again . I followed everything the hospital said, had a great diet, watched lots of funny films and tried to stay postiive through it, it feels surreal already and time has flown.