feeling let down

Hi Noodles

I am sorry to hear of your predicament. If it were me, I would swing into full lobbying mode and would demand chemo.

I would start very nicely but insistently with the BC nurse, the surgeon who advised the chemo, your GP and the oncologist. If no joy, ask GP to refer you for a second oncology opinion. You also need to find out what is wrong with your liver function and get this sorted -start on this with GP. If oncologist doesn't know about liver ask to be referred to a hepatic specialist. I fear that if you passively accept what you say has been said, that this will be the end of the matter. Make it clear that you want all the stops pulled out to get you fit for and treated with an appropriate chemo regimen for your triple negative BC.

No doubt there is a window of optimal efficacy for chemo, but I don't believe that there would be no effect after four weeks versus a few days earlier. (I and lots of others here had our chemo up front before surgery and got complete clearance of cancer from ruddy great BC lumps and previously positive nodes, so it can definitely work on more than just odd cells that strayed at surgery).

You need to get these people on your side and push for what you want and have already been told that you need. There likely  is a clinical guideline, which stipulates that Good practice is for the chemo to start within 4 weeks, but I don't believe that no exceptions can occur if a strong enough case is made. It would likely take the MDT to over-rule a Clinical Guideline and the reason for the variance would have to be documented.

You don't say what the McMillan helpline said or if you have family or friends who can help advocate for you. Also not sure whether maybe some of the cancer charities can help with advocacy. Whatever, you need to get on this as quickly as possible, starting First thing in the morning.

Sending you big hugs and wishing you all strength to take up this fight.

All the best

WallyDug

Hiya WallyDug

Just writing it down and having a reply from you has made me feel a bit better.

It's been just over 4 months with no treatment and the chances of chemo working are meant to be 147% worse. The oncologist said he would have to reduce the chemo to 10% of what it should be and as I had 81 % of a 10 year survival rate if it doesn't come back in the first 3 years and 4.9% margin ? he didn't think it was for the best, he's very much a % man.

I called the line on Monday because and I feel no shame in saying this but I am scared, they said a nurse would call me Tuesday but they haven't. 

I live alone and my family although they are supportive they don't know how to help me

The big hugs are very much appreciated 

Hi  so sorry to hear your challenges with treatment, it sounds very difficult. My consultant was absolutely not a %man and in fact very reluctant to talke numbers and probability with me. I liked the fact he talked about options and recommendations and has been super supportive.   I do wonder if asking your GP for a second opinion, as Wallydug suggests, might help you. I know that might feel uncomfortable but I think sometimes we need to get a little pushy to get things sorted and it sounds as if you need to find the courage to do that.  It shouldn’t have to be that way and I wish you lots of luck and positivity.

Hiya Irishgirl16 thank you for your support.

I just didn't know where to start which is why I thought I would try the nurses first as they are meant to be specialist in this sort of thing, tbh I haven't been overly impressed with the oncologist from the start. The % rate of me having triple neg bc was only 3% but I have it and its not in my genes so 81% is not really that good in my mind especially as I have some more pain now.

But thank you again for your positive thoughts 

Gosh I feel your pain! I too had to decide about chemo and my oncologist is a “maths” man and I feel not taking into account I have now had 4 recurrences in a year! And 2 on my mastectomy scar! I am starting chemo next week but I think my onco wasn’t really on board as he said there was 2%chance it would help. I asked him what he would  oh d do if I were his wife and he answers I don’t know we have 3 small children to which I said well I have 3 grown up children who would like me to see them maybe get married etc. Demand the chemo! I know it’s tough. My circumstances have changed in the last couple of days cos I have found another nodule and just had it removed so I feel they are all rushing around me trying to make up for lost time. Be strong! If you have a partner get them to come with you and speak up on your behalf cos it’s hard to get the words out sometime. Thinking of you and sending love x

Hiya Whitestar thank you for your reply.

I feel the same way I don't think he has wanted me to have the chemo from the start,he was quite annoyed that I questioned his decision and kept on about only 19 women in 100 will die from it which in my mind is still too many and how does he know who the 19 are . I just get a nagging feeling that I will be having reoccurrences too ,I am not a lucky person. The nurse finally rang back this morning and said that because of my dodgy liver readings they don't think my body will take it so the best way forward will be radiation therapy a ct scan and an examination 

My thoughts are with you and I wish with all my heart everything goes well for you

Teresa x

Hi Noodles

So sorry to hear your having to go through this but I can definitely relate. We put are trust in the doctors as we rely on them being the experts but at the end of the day it’s our lives at stake. 
If you are not a pushy or tconfident person and let’s face it this journey takes away a lot of your confidence! Then it’s difficult to get answers.

I had a mastectomy and reconstruction they sent for an Oncotype dx test ( only after I signed to say I’d have chemo if it came back saying I needed it!) I had 2 seconds to make this decision during my breast check! Ethics goes out the window!

when I went for the results after building up to it they had forgot I was coming so not checked! The consultant did ring later that day but was in the phone for a few minutes and basically said results were 20 so I don’t need it! There was no discussion around anything! 
when you look at the prediction I am also 81% surgery alone and hormone therapy which I am now on for 10 years gives me an extra 4%. Chemo would only give me an 4% too however, does that 4% warrant the side effects? These are the things we just don’t get the answers too.

so I am signed off!. The GP took  all of 2 minutes on the phone to sort out my prescription of a 10 year medication, he couldn’t get off the phone fast enough! No discussion on side effects or follow ups! 
So you are definitely not alone here and everyone seems to get different advise and treatments too. My cancer was small but grade 3 invasive!  
The only blessing( if I can call it that) is I’ve had an additional CT scan as having liver problems so had full scan which will show if there is anything that was missed. At least I can have some reassurance from that. 
I guess there are times when we don’t need chemo and we really don’t need it but getting our heads around that is difficult as we are then having to trust others that they are making the right decision and that’s a really difficult thing to do. One minute we have something horrendous and the next it’s fine!!! I understand your struggle.

take care now

Rinie

Hiya Rinie thank you for replying

I agree totally with you . The experts spend the first weeks telling you that chemo is the only thing that will kill it off and you really should have it so you struggle to get your head around it and then the same experts that told you you have to have chemo are now saying just radiotherapy will be enough. 

It's just terrible what you have said with the gp and it makes you feel totally undervalued and swept under the carpet I really hope you are ok and I understand your struggle too

Take care too Teresa x

Thank you Teresa for the kind words and support 

xx