Need advice

Hi forum members

I have copied this post from Lozzi as I think it is more suitable here.

Hi All,
I think I’m in the right place - but who can tell. Frequent visitor to numerous forum sites but never joined as I’ve usually found information from reading the various entries. Anyway, I’m now indesperate need of some advice please.

My Sister phoned me earlier this evening to let me know how her check-up had gone at the hospital today - she was first diagnosed with breast cancer in 1999 and had a lumpectomy performed on her left breast. The cancer had spread to her lymph nodes. She had a long haul of chemo followed by radiotherapy and spent 5 years on Tamoxifen. In 2006 she found a tumour under her right armpit which was too large to operate on. This was given some very hefty chemo to shrink it but by which time had spread to her right breast and lymph nodes. She had both breast and numerous lymph nodes removed in October 2006, again followed by some really vicious chemo. This was that strong and making her that ill that her consultant decided to halt the treatment as it would have probably killed my Sister. She has very severe lymphodoema in her right arm and a lesser case in her left arm. She has been unable to receive any treatment for the right arm arm as yet due to infection. She has been going to the doctors for the last 3 weeks with a pain in her ribs - the doctor thought she may have cracked a rib due to bad coughing and sneezing fits. Well anyway, to get back to my comments at the start of my message - on her visit to the hospital today she has again been diagnosed with cancer. She has had a scan and they have found a tumour behind her ribs roughly the size of an egg. The consultant has told her that it is in-operable and they are going to try to shrink/stunt growth with chemo given through tablets. This is the only way they can administer chemo due to the fact that her veins are shot from all the past chemo she has had. They have taken her off the Arimidex that she has been taking for the last 12 months. Whilst we always knew that the cancer would eventually come back, we never expected it to be so soon - especially with all the chemo she has endured. We even got as far as her consultant telling her on her last visit to him in Dec 06 that all the cancer had finally gone.

The thing is that now we don’t know what to expect. We’ve (my Sister and I) gotten by in the past by doing research, asking questions, etc. etc. and supporting each other every step of the way. We are extremely close and have fought the cancer together (my only regret is that I couldn’t have taken away some of her pain) and have always been positive despite our immediate family falling to pieces at the news. I just don’t know where we go from here.

She is waiting to go for a full body scan to determine if the cancer has spread elsewhere. Meanwhile I need some help please. Can anyone give any info or advice as to what to expect, what other treatments may be worthwhile, anything that we can get our teeth into to fight this thing. They have put any treatment for her lymphodoema on hold as they say it is not necessary!!! Does that mean she hasn’t got long to live or that the problem is now un-treatable due to the new cancer??? Her consultant has said that the long term forecast is not good - what the hell does that mean??? I currently have a close friend who is entering the latter stages of pancreatic cancer and she was told she had between 3-6 months to live at the end of October 07. Is this what they mean??

Any help or advice would be greatly appreciated and please accept my apologies for going on for so long.
Many thanks in anticipation to all you brave, wonderful people out there.

Love Lozzi.
x x x x

Dear Lozzi,

I don’t have enough knowledge about treatments to help you out here, all I can say is I hope however this turns out, your sister and you cope as well as you’ve done so far! All my best wishes for the both of you and the rest of your family,

love from AnnaBell

Hi Lozzi,

so sorry to hear all the problems your sister is having. It is wonderful that she has such a supportive sister in you. There are many different types of chem around and I was a bit surprised to read that they are going for an oral one because of the problems with her veins! One of the oral ones is xeloda (capecitabine) and there are a lot of success stories on the forums about it. But she can have a hickman line or a portacath put in so that they do not need to use her veins. This is worth asking about - they can also take blood samples that way too. Re your question about prognosis - I know we sometimes want the medics to be honest with us BUT they dont always know. Some who appear to have a very good prognosis can progress very quickly, whilst others with a very poor prognosis do incredibly well. I was told at the outset that mine was not good and that was 18 years ago. I have had several recurrences and have had secondaries for past 5 years but am still keeping very well - so don’t give up hope.


Hi Lozzi

I was going to post exactly the same thing as Dawn has said about the chemo - I’m quite surprised they’ve said she can only have it in tablet form because of her veins. This was my case and I’ve had a portacath for the past 3.5 years which (I think) is better than a hickman or picc line as there’s not the same problem of infection with it because it’s totally under the skin.

Sorry to hear what a hard time both you and your sister are having and I hope things do get better soon, even if only in clarity of some of the questions you’ve asked.

Does your sister have access to a breast care nurse or Macmillan Nurse as they might well be able to answer some of your questions as well. I would have thought, if they think the prognosis isn’t good that your sister would have been referred to a Macmillan Nurse.

Take care.


Hi All,

Just a quick update and a big bunch of hugs and thankyou’s to you all for your replies. I printed them all off and took them with me when I visited my Sister at the weekend. What a boost they gave her. My brother-in-law also read them and I think it gave him a much needed lift and helped him realise that we can still be positive and still fight this thing to the bitter end. My Sister went for a chest x-ray and liver scan yesterday (fingers crossed) and we have an appointment to see her consultant next Friday (22nd). It will be the longest week of our lives. The good thing is that since my Sister stopped taking the Arimadex, her joint pains have vanished. She suffers from rheumatoid arthritis anyway so the drugs were making her life unbearable. At the moment she’s like a little spring chicken!!! It’s wonderful to see. We also picked up a couple of pointers from your emails that we have noted and will be asking her consultant about when we see him.

Hope you have all had a lovely valentines day and are in good spirits.

If anyone needs an ear or a shoulder - I’m always available.

Take care all and I’ll be in touch with any news as soon as we have any.

Love to all,


x x x x