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Told the news I have secondary cancer.....devastated!!!!!

5 REPLIES 5
lucinda
Member

Re: Told the news I have secondary cancer.....devastated!!!!!

Sandra unless they have a crystal ball no-one can give a prognosis. I was dx with secondaries from day one, bc but no primary known sread to lymph nodes and exstensive bone mets, and I only went to gp with back pain which wa so bad I could not lie down or sleep. That was early 2009, I was dx with liver legions Dec 2010 and am now on capecitabine having been on hormone treatments, a trial drug and had several blasts of radiotherapy. I know my cancer is uncurable but I also know it is treatable,there are lots of treatments and I am not ready to admit defeat or use the word terminal.

I think your treatment has been very badly managed, your children should never have been told what they were- it is totally unproffessional and actually against all the guidelines.

As I said in a previous post I would personally be looking for a new oncolgist and seeking a second opinion about my treatment.You can just ask your gp to refer you to a hospit al and oncologist of your choice, the best think to do is go to a specialist cancer hospital and they will totally review your treatment plan. Take your children or family member with you and you will all know exactly what you are facing. I also think you should ask for councelling or go somewhere for support, do you have a maggies centre or something similar near you. I would also suggest you speak to someone on the bc helpline. Please ask someone for help.

 

L xx

 

 

Lulu34
Member

Re: Told the news I have secondary cancer.....devastated!!!!!

Sandra no wonder your devastated this sounds like a catalogue of disasters.... I think I have maybe spoken to you before on another thread as i recognise your story.


Its very very rare to get secondary breast cancer in your breast and it would normally have to go through our lymph nodes so if your nodes are clear its highly unlikely to be mets.

I think in your situation id be getting a new doc straight away!

I have had breast cancer in both breasts they were two primaries and not related to each other.

How ever since then iv had a recurrence and now have lung mets but thats just the luck of the draw.... If you have a new primary then treatment would be just as successful regardless of whether its your first cancer or a second primary.

As Vicki says secondary breast cancer (cancer that has spread to other parts of your body ) although incurable is still very treatable and there are ladies on here who have even been living with it for decades.

I think PALS is also a very good option.

Huge hugs xxx
Jo_BCC
Member

Re: Told the news I have secondary cancer.....devastated!!!!!

Hi Sandra51

 

I'm sorry to hear that you've had so much confusing information given to you and can understand your concerns here.  If you would like to give our helpline a ring and have a chat with one of the staff they'll be only too happy to tallk to you as they're here to support you through this.  Calls are free 0808 800 6000 lines open at 9am today through to 5pm (Mon-Fri) and Sat 10-2.

 

Take care,

Jo, Moderator

StickiVicki
Member

Re: Told the news I have secondary cancer.....devastated!!!!!

Woaw!  They seem to be very confused and I think the first thing that you need is to get a clear diagnosis.  If the cancer is in your other breast it may well be another primary, and therefore a second cancer rather than actually being Metastatic Breast Cancer (aka secondary, advanced, Stage IV).  Is there actually any cancer in your liver?  You seem to have several people telling you different things.  Even if the cancer is in your liver you can still live for years with this.  If there is cancer in your other breast you should ask for a biopsy to make sure that it has the same hormonal status as the original tumour.  Breast cancer can be sneaky and change its status.  This is important to make sure that you get the most effective treatment. 

 

You should also make sure that your onc knows that you need to know what is actually happening.  However, if you do this you should be prepared for the possibility of bad news, but what is happening at the moment must be very stressful because different people are being told different things.  If you don't feel up to this then get one of your children to find out for you and then be honest with you about the results.  The doctors need to be clearly communicating with you, which is something that they seem to be especially bad at.  They do feel that they should decide what you know, instead of asking the patient how much they would like to know.  Some  folks would no doubt be honest and say they don't want to know what is happening and are happy to live in denial (for want of a better term).  Make sure that you get clear answers.  If necessary write down questions and nominate someone to take notes.  This should be someone with a clear head, and maybe a friend would do this better than one of your children.  I do feel that you really need to do this because it is possible that you and your children have had a panicky reaction to what has been said.  We have all been there.  That OMG sensation when the possibility of cancer and a spread / recurrence; the brain goes a bit fuzzy and you can't take in what is being said properly, or you think you do and then you just aren't quite sure what the doctor said when the haze clears a bit.

 

Also abnormalities in your liver does not have to mean cancer.  You can have scarring from illnesses or accidents and unless they do a biopsy they will not really know until you have more scans which will probably be in a few months.

 

I would add that if you can't get clear information you can contact the PALS (Patient Advice and Liason Service) at your hospital and explain that you are confused by what you are being told and you urgently need to have a proper diagnosis.  Their contact details should be on the hospital website, and possibly in information that you have been given already.  PALS are there to help you.

 

Vicki xxx

SP0
Member

Re: Told the news I have secondary cancer.....devastated!!!!!

Hang in there Sandra, remember the positive stories you've read here - my multiple liver lesions shrunk right down with chemo.
Good luck. Sarah
Guest user
Not applicable

Told the news I have secondary cancer.....devastated!!!!!

I was told 2 weeks ago that I have secondary cancer in my right breast by my onc who is questioning it and saying its a new cancer....I was told by her it was a blood blister weeks ago and not to worry!!....also she told my son and daughter that I have months to live.... I was also told I had abnormalities on my liver.. 2 days after seeing her she phoned me to say my liver is clear!!... how can they give results without having all the information???..so now she is trying me on a new chemo regime.. GemCarbo which will hopefully control the spread... what I want to know now has the timescale she gave me changed now my liver is strong enough to fight??.. I have been told nothing... met with a marie curie doctor who told me that it is secondary breast cancer and that she doesnt see a woman who has got months to live sitting in front of her......up until today I and the family have been coping ok.. many tears... feeling positive for the first time since told............ but its really hit me tonight that this is happening... ive been reading the inspirational stories trying to get some idea.....but I really dont know how I feel... all I do know is that I am not ready to go anywhere just yet!!!!!...I start chemo on the 25th Sept praying that it will work xx thanks for letting me rant!!!