Back form seeing oncoligist

Hi everyone
Thanks for all your help and advice yesterday, well i went to see the oncoligist today and unfortunately i do have to have cheno first followed by 5 weeks rads then hormone therapy. The oncoligist told me that i am hormone positive but not greatly (whatever that means) im also HER2 negative so wont have hecepton. Because my lump was grade 3 he said that chemo first was the best treatment option for me .Im very tearfull at the min suppose i was hopeing that i would just need rads and hormone therapt but there it is , ive also been asked if i would consider the TACT 2 trial or the standard FEC and realy dont know what to do its all a lot to take in isnt it if any of you ladies can help me with deciding it would be a great help ,they have given me info on both and i have untill weds 29th aug to decide as thats when my appointment is to meet the chemo nurses and to discuss my treatment and everything. They have said that the chemo could last up to 28 weeks depending on which one i go with , I know a lot of you ladies have more to deal with than me here and i dont know why today im feeling so sorry for myself i quess its just all finally catching up with me ,its only been 5 weeks since going to my gp with a lump and its been a rollercoaster ever since as im sure you all know. Im sure tomorrow ill buck myself up again and sorry for having a wobble . Thanks for all your help and support and my thoughts are with all of you on your own journeys.
Lots of hugs
Lindiloo x

hi lindiloo,
can understand completely how you feel, i felt exactly the same when i was told i had to have chemo, can’t really help you with regard to your decision about which chemo i had FEC and my side effects were not as bad as i expected, i don’t really know that much about the TACT 2 trial but i’m sure someone else will be able to help you.
i was very tearful and felt like i was in a deep hole when i was told i had to have chemo…infact i hit rock botom and ended up on Tamazepam…it did help though.
don’t apologise, you’ll have lots of ‘wobbles’ i still have them now…but we’re always here for you.
take care
karen x

Dear Lindiloo

Please feel free to contact our confidential helpline, our team of specialist nurses are able to offer you further support and information which may help you with your decision making regarding the treatments you have been offered.

The helpline number is 0808 800 6000 and it is open Monday to Friday 9am-5pm and Saturday 9am-2pm.

Kind regards

Jane
Moderator
Breast Cancer Care

Hi Lindiloo,
dont be worried about saying how you feel here. xxxxxxxx
We have all been through this and know exactly how you feel. Im sure we have all had similar days when we feel we cant take in any more and were overwhelmed with it all. And it absolutely normal to have bad days when all we can do and cry. But it does get better and you do find your inner strengths.

I decided to go for the TACT2 trial. I felt that I needed to be treated so lets get on with it. I had a talk with the trial nurse and felt it was a good option for me. Because the arm is randomised I might get the standard treatment or I might get a quicker option. All the drugs are established drugs that are in use and I felt that if I had this disease I might as well try and possibly help women in my situation in the future.
I got arm 4. And I feel it has helped me. The Epi is every two weeks ( the trial nurse gave me it so my apppointment was with her and I never had to wait about) with the Neulasta injection the day after the Epi and our district nurses came to my house the day after the Epi to give me my injection so I didnt have to go out and put myself at risk. They also came out and took my blood sample the day before the Epi was due. They were lovely about it and I cant praise them highly enough.
The Capecitabine is so much better as its no more intravienous (my veins are bad) and it doesnt affect my Diabetes. Not so many side effects at all (although I still feel very tired) .

If you decide to go on Tact2 you agree to give some extra blood for the trial. But you get more personal attention. Ive found my trial nurse very approachable and Ive been able to ask her more questions than I could the onc. And I`ve been able to ask her at any time not just at my appointment.

Dont be swayed by what I say. Make the decision which is right for you. A friend of mine went for the standard treatment as she said she felt safer.
We both feel we are getting treatment and we are going to get better. Positive attitude even though we both end up crying at times.

When you`re feeling down remember we are all here with you. And we know exactly how you are feeling.

Lots of hugs.
Margaret

Hi Lindiloo,
Yes, it feels like a real kick in the guts when they first tell you, probably surgery then rads and then they decide after looking at the lump you need chemo as well- that’s exactly what happened to me. I nearly told them to stuff the chemo but in the end the “what if” feeling and my family’s feelings swayed me. At first I rejected the trial, but after thinking about it and chatting on this site about it, I changed my mind, partly because the general consensus is you get a bit more personal attention from the research nurse and partly because all the drugs in the trial have are well known treatments already, its just a new treatment protocol that’s being trialled really. I was really pleased to see the research nurse in the chemo suite when I went for my first treatment. I was emotionally vey wobbly then, and it really helped.
I was on arm 3 of the trial, and had epirubicin once every three weeks, and now I’ve moved on to capecitabine. So I don’t have to have cannulas anymore, which is great.
However, you don’t get to choose which arm of the trial, it’s randomly assigned to you, so I won’t go on about the different drugs and effects- first you need to make your decision. Good luck, and remember talk to as many people as you need to,
I phoned the research nurse several times before making up my mind with all my questions.
Good luck
Jane

Hi Lindiloo,

finding out you have to have chemo can come as a bit of a blow, so its understandable that you are feeling upset right now. Sometimes it feels like they keep moving the goal posts doesn’t it? I remember when I found out I was HER2+! I had just got my head round to the fact that most of my treatment would be over by christmas, then found out I will be having Hercpetin for a year. So, now the ‘finishing line’ had been moved to Christmas 2008!!!

Anyway, enough of me wittering on! Chemo is very tough, both mentally and physically, but VERY doable!! Trust me, if I can do it then anyone can! I started my chemo in May and I am taking part in the TACT 2 trial. As Margaret has mentioned, what ‘arm’ of the trial you end up on is totally randomised, its done by a computer at the Royal Marsden. I am on arm 2, which I was actually very pleased about. I started with accelerated Epi and am now on standard CMF. Total duration should be 5 1/2 months. The ‘extra’ care you get whilst on the trial is fantastic and the follow-up is supposed to be equally good. The trial had been going on for quite some time now so I was happy to ‘sign up’ as I thought any ‘teething problems’ would be well and truly ironed out!

I wish you well for your forthcoming appts. Do let us know whether you decide to go for the TACT2 trial. Don’t forget, you can ‘opt out’ at any time if you decide to go for it then change your mind,

Take care,

Kelly
-x-

Hi
Like you I was offered Tact 2. I declined. The trial meant that I would have to travel further for my treatment and would probably last longer. I was swayed by the closeness of the hospital for standard treatment and the fact that I have just started a new job (3 months b4 diagnosis) and so wanted to limit the period of time I had to take off work. It seemed that although the trial was accelerated treatment that in totla it lasted longer. I don’t know if it was the right decision but it feels right for me. I have met the people who will give my chemo and am happy that they are there for me in any way I need, Don’t feel like I would be any better off with the staff if I accepted the trial. Know this doesn’t help just a different perspective! Good luck with the decision.

Thank you to all of you for all your support and advise, it realy does help to be able to come here and chat about how we are all copeing. Now i know about the chemo ive been searching around the internet for wigs( think i better be prepared in advance) ive been quite surprised at how nice some of them look if anyone has any sites to reccomend id appreciate it, the nurses told me about being able to get one on the nhs but as we are not on any benifits id still have to pay for one so ill proberly buy one privately. I am self employed (home help/carer) and ive been told i wont be able to work as i will be open to infections as i work for elderly people im realy going to miss my job and the people. Ive just realise ive not only lost my income but cant get any help with the extra costs of having breast cancer it seems very unfair but my husband works and everything is means tested, my hospital is 12 miles away and we dont have a car so the transport each visit cost a bit too. Well i have 99% decided to go on the TACT2 trial just gonna have a final chat with one of the nurses but i think to try and help future ladies like us it can only be a good thing .Your expierences have realy helped me in deciding what to do and i think you are all so inspiring and such lovely ladies i hope one day down the road ill be able to help other ladies who are new to BC. Thanks Karen,Margaret,Jane,Kellyand jewjew i hope you are all well and i know with the great positive attitudes you all have you will get through this horrible desease just fine.
God Bless, Lots of Hugs
Lindiloo.