I have recently been diagnosed with BC and had the op on the 20/12. WLE with lymph node removal.
Have had my first appt with the oncologist. He advised me that it was a 4cm , grade 2 tumor with 7/10 lymph nodes infected. He doesnt want to start my chemo until I have had a body scan to look for other tumors( I am very scared about this - am I going to be riddled with it ?)
Have been recommended for Chemo/Radiotherapy(5 weeks of) and then 5 yrs of drug treatment. I have also been asked if I want to go for the clinical trial chemo.
Just wondering if there was anyone out there who could give me ideas if this is normal? I know I am a wimp but i cant help it.
I cant decide what to do about the trail - is anyone on it already? Hows it going?. I kind of feel that I should do it - Help !
So much to say/ask. I also cant decide if I should go back to work after this week & before the treatment starts
Sorry you have had to join us - but you will get a ton of support on here from people who have been through just the same.
I was diagnosed on 1 Nov 07, following mammo/ultrasound and biopsy. Consultant advised me that it was 3cm lump, with likely node involvement. She gave me the choice of chemo to shrink the lump or a mastectomy, with mastectomy being her recommended option. I opted for the mastectomy and was then advised that prior to surgery and further treatment they would carry out bone/liver/lung scans. I was told that this was so that if there were any further cancercous areas they could refine my treatment plan to take account of everything - rather than having me in for an op and then discovering they needed to do anything else.
I went for scans on 8th and 9th November - MRI scan for bones, and liver ultrasound and conventional lung/chest xray - all of which thankfully came back clear. My surgery then took place on 13th Nov.
This was to be followed by 4 x chemo (which I am just about to finish), then 16 x rads sessions, 4 x more chemo and a hear of herception (as I was HER2+).
You aren’t a wimp - you’re just not in possession of all the facts at the moment. Believe me we have all been there. Once you have a clear idea of your treatment regime, and results from the body scan, you will feel a lot more in control. All of the treatment is do-able, as the other lovely ladies on here will tell you. Don’t get me wrong, there are ‘down’ days where you think you won’t cope, but these are more than outnumbered by the good days.
I’m not on any trial so can’t comment on that.
I was always adamant that I would continue to work during my chemo - this hasn’t happened - I was signed off sick after mastectomy and have not returned and am currently signed off for 6 months. Other people do work though - we all react differently - you just have to take it as it comes unfortunately!
You aren’t going mad - and you certainly aren’t boring us lol - please keep us posted as to how you get on with it all
Hi Tippy,
Sorry you’re here with us but ‘welcome’.
Where I live it’s not routine to do a scan before chemo. I’m wondering if the scan may be to set a baseline in case you do choose a clinical trial. Also, the chemo can be pretty darned effective and they probably want to know if there’s anything else going on cos they won’t be able to see it if they wait till treatment’s started!
Deciding whether to do a trial is a big decision and unfortunately you’re already having to swallow vast amounts of new information about your diagnosis and the implications. There must be some kind of pre-trial ‘counselling’ where they go through all the ins and outs and what-ifs, before you are expected to decide. Otherwise it would be immoral to expect you to make a choice. There is absolutely no way of knowing whether the trial will be an advantage. What you can be sure of is that your health will not be compromised if, for example, they realise that one group of patients is doing significantly better than the other (as happened with herceptin) when they would stop the trial and give everyone the ‘good’ treatment.
As for going to work, don’t think about what suits everyone at work, or your employer - think about what suits you. The great thing about this disease is that you can do what the heck you like, and nobody can argue! In fact everyone has bent over backwards to accommodate my choices (that’s called ‘playing the pink card’!).
I really hope you will soon get some answers. You can always phone your onc’s secretary with any questions, or a BC nurse. And that you will know what feels right for you, and make a decision you can feel at peace about.
All the very best
jacquie x
Thanks for your advice. Its nice to feel that there is someone out there to give me a bit of a boost.
The lady from the Clinincal trial called me yesterday to discusss my thoughts. Have been given a raft of stuff to read. I have read through it and in my typical style have asked for opions of everyone that will read it !. I think that I have made my decision and am going to go for it. After all its the only way that treatment for this will progress - well thats what I think.
Scan is now booked in for monday & i am feeling quite nervous about it. I am really hoping that they done find anything else, i dont know if i would handle that very well. At least results will be fast as I will see the oncologist the following day. Keep your fingers crossed for me.
Have been hassled a bit from work over the past few days about when I am coming back( its starting to stress me out !) they have insisted on coming to see me today although i really done want them to. Also they seem to think that i will just need an afternoon off to go to chemo & then I will be back at work. I am begining to feel really pressured. Its not as if I have an office job that I could just sit at the desk at!
Will keep everything crossed for you for Monday - hope all goes well.
Don’t let work pressure you - everyone is different. They should not be hassling you about when you are going to back for heavens sake. You have rights in all of this as well as them - make sure you read through the leaflets on here and at cancerbackup about work and your illness - ensure you are aware of your rights.
I big hurray from me as scan clear - what a huge weight of my mind. All steam ahead for chemo now which starts next week. I decided on the trial ( on arm 3 ) I am sure that its the right thing to do
Work are still being a pain. They made me go in this week and are expecting me back in a couple of months. still feeing quite pressured by them so may have to look into where i stand in full.
Hi tippy - that’s great news. As for the chemo - it isn’t particularly pleasant - but it is very do-able. There are loads of helpful threads on the Undergoing Treatment: Chemotherapy section for preparing yourself for this.
With regard to work - do not let them pressure you. Following a diagnosis of BC you have rights under the disability discrimination legislation - if you google this you will find out more, or use the excellent leaflets available form here re your diagnosis and work. The last thing you need at a time like this is any additional pressure being put on you.
I am posting a link to cancerbackup ‘Work and cancer’ page which contains helpful advice regarding your rights as an employee following a diagnosis of breast cancer. As Margaret has pointed out, you are covered by the DDA (Disabilty Discrimination Act) and this information is included which may help you to better understand your rights:
If you have any further issues or concerns please call our confidential helpline on 0808 800 6000 Mon-Fri 9am-5pm and Sat 9am-2pm for information and support.
Hi Tippy
I had a lumpectomy and full lymph node removal on 14 January. I was told before the op that I would have 5 weeks of radiotherapy afterwards. But now I am told I have to have a bone scan and CT scan followed by 6 months of chemotherapy and then the radiotherapy. I hope this is just a precaution but it came as a bit of a shock. I have also been advised not to go back to work before the chemo as if I get a cold or virus of any kind I will be unable to go ahead with the chemotherapy.
Don’t worry about work, the important thing now is your health. Look after number one, work will take care of itself.
Thanks for your support. I am going to have to look into the stuff on work, all they seem interested in is when I can get back. At lease I can find out where i stand & I may get in touch with the union if needs be.
Maugiff - sounds like you are on the same path as me. I have had the scans & am now on to the chemo followed by 5 weeks of radiotherapthy & then 5 yrs of drugs.
Hope things are going ok for you and your arms not too stiff. Mines not too bad now but I was really impatient to get it back to normal ( I am not very good at letting people do things for me). Let me know how you are getting on
I am in the process of putting together a Chemo kit based on all the advice from the site. I am hoping that I have got it all covered. May go & look at the wigs on Sat before my own hair starts to go. Does anyone know how long it takes for you hair to grow back on average. Obviously I am not talking about flowing locks, just regular short hair ?
Hi Tippy,
Just wanted to say how glad i am that your scans were clear - that’s brilliant news. Now you ‘just’ need to grit your teeth and get through the next few months… Glad you’re getting organised and have found the site helpful. I finished chemo at the end of Nov, and my eyebrows and eyelashes are back, my hair’s still less than a cm long, so I guess it’ll be another couple of months before I go out wigless.
Do take time finding a fabulous wig that you are really happy with, even if you have to buy your own. Absolutely a worthwhile investment in my opinion. You do have to push thru a confidence barrier the first few times you go out in it, so get a girlfriend to come with you and ‘walk you out the door’ if necessary! After that it just becomes second nature to jam it on your head, scrape a brush or fingers thru it and fly out the door.It’s so quick, I’ll quite miss the ease of it when my hair’s back.
All the very best for your treatment
Jacquie x
Don’t let work bully you. I work in the office of a school for the county council. I get 6 months full sick pay and 6 months 1/2 sick pay. I have worked there for 12 years. If necessary, go to the citizens advice bureau to see what your rights are. I have a friend who works for them, I will try to find out for you. What work do you do and how long have you been there?
Unfortunately, I am due to retire in 2009 at the age of 60 but as the pension is final salary I may have to stay on another year to make it up. I am making enquiries about this at the moment.
1st chemo was yesterday & not as bad as I thought. Although apparently my viens are rubbish & they want me to think of having a line put in.
Not feeling too sick yet ( all my fingers & toes are crossed) although found the red wee a bit strange. Stillforst one down so lets see how it goes.
Have been to look at a wig & have found one thats not too bad. Quite similar colour to my natural hair and just a bit longer. My sister thinks its not too bad so they have put it to one side for me in the meantime.
Was also wondering about scarfs etc. Rubbish at anything stylish so have considered a pre tied one & then a jersey one for the house.