Breast cancer

Affected by breast cancer? Join this group to share experiences and ask questions to people who understand what you're going through.

Secondaries - Advice please

purplediva
Posted by

Hi all

Just diagnosed yesterday with secondaries in bone, liver and lung. Would appreciate some advice on which groups to join. Should I join all or just one to start with? I don't know what I'm doing. I know I'm rambling. Okay, deep breath. I don't have a treatment plan yet, I should be seeing the oncologist next Wednesday. I'm just really struggling at the moment and feel totally lost.

I am also thinking about complaining about the doctor who proceeded to tell me to stop crying and pull myself together. Apparently he'd had a row with someone before he saw me.

Any help would be great.

Thanks.

 Jane x

Daisylou2
Posted by

Hi just read your post and noticed you hadn't had any replies. I am not really the right person to give you advice but just wanted to say I am thinking of you and I am sure someone will come along soon to give you more practical advice. Good luck and cry as much as you need it's healing. Xxx

Clare

Weeblemum
Posted by

Hi Jane

Firstly, sorry you had to find your way here, but welcome anyway! 

I have secondaries in lungs and bone and have joined those groups as well as this main one. The other groups tend to be quieter than this one, and I think there are plenty of ladies in this main group who have secondaries, so there will be plenty of good advice, hugs and empathy in this group if you don't want to join others at the moment. 

Waiting for a plan is always the worst bit - the whole process seems a little easier when you know what the first part at least of the 'journey' is likely to be. If you can keep yourself busy it might help, but I would avoid Dr. Google if I were you - there are some frightening things out there... 

As for the doctor's attitude, yes complain - that is a completely inappropriate thing for him to say, whether he'd had a row with someone or not! I can't believe that any doctor would be that unaware of the shock and devastation that a cancer diagnosis can bring - he needs to be reminded of that at least! 

Whatever you want to ask, whatever you want to vent or 'moan' about, then you're free to do it in here - we'll understand and help where we can! 

Best wishes

Cathy

Best wishes

Cathy

x

Cheeryday
Posted by

Hi Jane,

I have no answers for you either but echo what Daisylou

said. Thinking of you. Perhaps try some other groups for more support

Love CD xx

Cheeryday

Leolady56
Posted by

Jane

You may wish to spend a few sessions reading different threads until you find a group of like-minded people to join in with. I, like you, started a thread a few months ago and found that group of like minded friends. So maybe that will happen to you as well.

As for ignoramous that masqueraded as a doctor/ consultant. There is a website called : iwantgreatcare.org

On that site you can put in the name of the person and write a review. They then are used to assess the work practices of NHS staff and the hospitals. Public sector workers - of which I was one for 38yrs - have to be accountable. I know that is a horrid word but. At least you can vent your spleen in a controlled manner.

Wishing you peace of mind and gentle voyage through this rubbish

Take care and may your god be with you

Leolady xxx

What is a Community Champion?

How to add to you profile

Life is like a boxing match, defeat is declared not when you fall .....

But when you refuse to stand up again .......

So, I get knocked down but I get up again. x

toxophilite
Posted by

Hi  

I'm sorry you've landed here. I can't even begin to imagine what is going through your head right now. 

This is a pretty good place to start - it's (sadly) a very busy forum, so plenty of ears and shoulders when you need them. Even through the night on the AWAKE thread!! So feel free to ask questions, or have a rant and a cry if you need to.

There is a Secondary Breast Cancer forum, where you will find discussions that are more specific. I'm going to tag , who is a pillar of support in both forums.

Re: consultant - I would definitely be complaining about being treated like that - what did he think you were going to do? PALS is a good place to start, their details will be available on your hospital's website or in a leaflet at reception.

I'm sure you are in desperate need of a hug or two, so here's one to start you off.

Hugs xx

Karen

ronstar
Posted by

purplediva

So sorry to hear this! I haven't seen you around for a while, but wasn't imagining this. I think you've had all the advice you need about the groups - I just wanted to say Hi and why not join them all and you will naturally gravitate to the ones that are right for you - obviously we'd love to keep you here!

As for the doctor - do complain. In your own time and in a way that suits you but it isn't an acceptable way to behave and, if we are feeling generous (which I wouldn't be) you will be giving him the opportunity to apologise if he regrets his actions.

I'm sure you must feel lost but we've got you this time just like before and we are all coming with you virtually next Wednesday!

Sending hugs

R

LondonLass
Posted by

Hi , really sorry to hear you find yourself here. Firstly it's totally normal to be all over the place after this news, it's not something any of us want to hear or expect to hear. But I can reassure you that there are many many treatment options available, so please don't panic! I have a couple of friends who have advanced secondaries and they are doing great! In fact I met one of them the other week for lunch and she was walking through town quicker than me!! I have bone mets!

Once you have the treatment plan I am sure you will feel a little more relaxed. Although from my experience it's not the physical side that is the biggest problem. It's getting your head around the idea that you will always be on treatment now! There is no getting away from all these appointments and tests, they will always be a part of your life! But having said that, you will be 'living with Cancer' not 'dying from It'! 

As for groups to join, my advice would be to join as many as you want but to then decide what suits you best. I looked at the incurables and decided it wasn't for me, I am on the secondary breast group, which I read and post on occasionally but the breast group is where I feel happy. It's a lovely group of fruit loops and its definitely a place to enjoy a laugh as much as it is to gain support and information!

I hope some of this helps! Give yourself time. Let things sink in and cry as much as you need too. That doctor needs to learn how to treat people. I'd like to see how he'd react if his/her partner were given the same news! Total twat who needs reporting! But only when you feel ready and up to it! 

Wishing you all the best and remember we are all here for you, day or night. Sal xxx

jmp
Posted by

Hi Jane,

Welcome to second time around also!

 I was initially diagnosed in 2013, had WLE,clear margins, no LN involvement,  Rads and put on Arimidex for 10 yrs. I got to Yr 4 .

On 4/01/18 I had the results of a CT Scan which showed secondary breast cancer in area near heart. My GP had suggested a CT Scan, she is married to an Oncologist at the Hospital. I had had lots of diarrhoea and back pain, now all gone as I’ve stopped Arimidex. 

Tomorrow I have an ultra sound guided biopsy,( received a phone call re this today),  ECG on Monday and start Oral Chemo Capecitabine on Wednesday. 

I think I can understand your shock I feel this too. The area I have can’t be operated on. The Oncologist who gave me the results said 1 in 3 get secondaries. 

I am trying to take it one step at a time. 

I have a list of Chemo dates: this apparently according to the Breast Care Nurse ( Secondary) who I met last week is the Treatment Plan. 

Please keep posting hopefully the secondaries can support each other!

 I have posted a query about Chemo and Capecitabine on the Jan Chemo Club but not received any replies as yet.

London Lass ( Sal) has been so supportive to me and I appreciate her messages so much !!!

I have joined the Secondary BC Group it is very quiet generally. 

I don’t even know basic stuff like what kind of thermometer should I buy? 

Love Judith xxx

 

jmp
Posted by

 The addition of a cat ? 

Trying to take my mind off current thinking !!

jmp
Posted by

Q and A  >^••^< 

jmp
Posted by

Goodnight all :-) xxxx

purplediva
Posted by

Thank you all. I was just having a moment, then I came on and saw your replies. I have joined the secondary breast group, but like Sal, I do feel comfy here, so I'll think I might stick around for a while!

jmp, that Mona Lisa picture cracked me up, just what I needed.

 Jane x

jmp
Posted by

Hi Jane,

What an insensitive,  inept individual.

He should provide an apology to you, have you thought of emailing his secretary to say how upset and distressed you felt by his behaviour? 

I had the news broken to me about secondaries  4/01 in the afternoon, I was on my own as was not expecting results of that nature otherwise would have asked a friend to come with me.

I had had a CT Scan on Dec 11th ( diarrhea and back pain : SE of Arimidex, now stopped as stopped taking). 19th Dec Onc did not have results when I saw him, but said” does not seem to show anything significant ” but I’m not a radiologist” , 29th appointment he  then cancelled and  said “  someone will telephone you with results on Dec 29th.

29th Dec no tel call. Jan 2nd I called Centre for Breast Care and relayed to them no results to Dec 11th CT Scan.

 I also emailed the Onc secretary and cc d in my previous Breast Care Nurse ( who is excellent). She emailed me back and said I have fitted you in with female Onc on 4/01.  

I could tell by the serious and concerned looks on the faces of the Oncologist ( nice lady) and Breast Care Nurse ( secondary) who had been assigned to me that it was not straight forward news.

I am still in shock but things are moving speedily along.  Last Monday had pre Chemo blood test & got med note at GP. Today,  had guided ultra sound biopsy. Monday have ECG.

Get pre Chemo info session, Oral Chemo and result of biopsy all Wed 17th Jan, the list of Chemo dates I’ve received in post is The Treatment Plan according to my new Breast Care Nurse. 

I went into the cafe at The Macmillan Horizon Centre ( Brighton) following biopsy today, my ex stepped up to the mark and came with me. So, I have some information about what is available  eg Yoga, complementary therapies and counselling are there too.  

I hope that you are feeling a bit better and things are being organised in a much better manner . Judith xxx

jmp
Posted by

Hi Jane,

I am happy the Mona Lisa plus cat cheered you up ! I will look for similar but for now for those dog lovers :-) xx