Questions around removal of the primary in metastatic treatment

Ballerina33

I am VERY new here so I hope this is not a silly question..... I have been diagnosed and one of my first shocks was they were no longer going to remove the primary cancer. I understand they say the data does not indicate significant impact on survival however this data is also questionable on integrity as its so old too. Has anyone also read about the removal of primary and the impacts and has anyone had a doctor willing to consider this? Or even address the conundrum of the data integrity vs the papers being written into this?

lrb_03

It's not a silly question at all. Although this wasn't my path and I don't have metastases it is something that I've wondered about. I have read somewhere about someone having there primary removed after a period of treatment.

TonyaM

Hi @Ballerina33,
It’s not that black n white.It depends on various factors such as age, state of your health, how far spread are the metastasis and treatment regime. A few ladies in my group went ahead with a lumpectomy despite having a’spot’ on their vertebrae.They were treated with chemo after surgery. Years later and both are doing well- ‘spot’gone for now.

Keeping_positive1

With all my line up tests they found I had some shadows on my lungs, and after having lumpectomies and all the treatment for the breast cancer / chemo, radio, herceptin, and continued on with the hormone blockers, I asked for another ultrasound on my lungs to see if the shadows were still there and they had gone.  Mind you, I had to ask for the follow up tests for the shadows, mainly because I wanted to put my mind at ease/ or were they still there and needed further investigations.  I wasn't diagnosed with mets, but whatever the shadows were, they were gone after all the chemo treatment.  

Not the same as what you are specifically asking though, but like @TonyaM says, it is not black n white.  You also have to be proactive and on top of your own medical conditions to know a certain amount of which tests you can suggest they do or ask for, if that makes sense.  I will always politely ask for any tests I feel relevant to ease my mind somewhat.  

Julez1958

Hi @Ballerina33
Welcome to the club no one wants to join.
Rest assured there are NO silly questions on here , and we are all here to support one another .
If you add your town/ region to your profile ( you will see I am in Sydney) people may be able to give you more targeted advice.
Are you in the public or the private system ?
I only ask that as the issue of getting a second opinion sometimes crops up and it may be easier to do that in the private system - on the other hand it’s all so overwhelming in the beginning and to a certain extent we have to trust these medical professionals who have done years of training to get where they are and will usually have years of experience on top of that.
There will be many factors feeding into the recommendations your medical professionals give you so what was the right choice for someone else will not necessarily be the right choice for you.
Although my pathway was different , I do understand that initial chemo or targeted therapy can shrink or even eliminate existing tumours so there is no need for surgery or the decision may be that the benefit of surgery is outweighed by the risks in all the circumstances.
Take care 🌺

Ballerina33

Julez1958 said:

Hi @Ballerina33
Welcome to the club no one wants to join.
Rest assured there are NO silly questions on here , and we are all here to support one another .
If you add your town/ region to your profile ( you will see I am in Sydney) people may be able to give you more targeted advice.
Are you in the public or the private system ?
I only ask that as the issue of getting a second opinion sometimes crops up and it may be easier to do that in the private system - on the other hand it’s all so overwhelming in the beginning and to a certain extent we have to trust these medical professionals who have done years of training to get where they are and will usually have years of experience on top of that.
There will be many factors feeding into the recommendations your medical professionals give you so what was the right choice for someone else will not necessarily be the right choice for you.
Although my pathway was different , I do understand that initial chemo or targeted therapy can shrink or even eliminate existing tumours so there is no need for surgery or the decision may be that the benefit of surgery is outweighed by the risks in all the circumstances.
Take care 🌺

I am in the private system in Sydney although I do live in Central West NSW 

arpie

Welcome to the club no-one ever thought they'd be joining @Ballerina33 - feel free to jump onto this thread to read up a bit of the website & other areas you may be interested in as well
https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest

Sorry I can't help you much with the surgery question - but I have friends who were told the same.  Tho 2 who had Mets in their hip DID go ahead with the hip replacements (the ball was the site of the Mets & it was cut clean off!) and one of them had a spot on her lung & it was also removed. They are both about 4 years down the track now & going well.  They are not on chemo - but they are on Hormone blockers.

We have a private Metastatic group, if you'd like to join it & then you can chat in total privacy with them (all posts outside the groups are visible to the general public.)

Coming from Orange, are you aware of the IPTAAS scheme for claiming back some of your fuel and accommodation costs, for having to travel outside your area for treatment?  

We have a private group where info is put up every time there are changes to the schemes or tips as well.  

You will need your GP AND the specialist to sign off on the initial form, then on the 'trip diary' get the specialist to initial/sign those dates that you are travelling/staying away.

Even if you are staying with family or friends, you can claim a lesser amount, per night for accommodation.

I live up the mid north coast area & had my surgery & recovery in Sydney - and I had my Rads up at Port Macquarie (where I stayed at the Rotary Lodge [on the hospital grounds] for my 4 weeks of Radiation - most of the lodges are much more economical than a motel and you are with like minded people - and you just walk to the Cancer Clinic for treatment.  

I'll attach the forms (below) that are needed to be filled out - for you to print off 

Ballerina33

Thank you and yes I would love to join the private group can you let me know how to join? And yes thanks I did do IPTAAS but its a drop in the ocean when you are having to go private and living at such a distance. 

arpie

No worries, @Ballerina33 - I shall tag @Mez_BCNA for both groups - Mets and Rural/Regional/IPTAAS ... with a bit of luck, you'll be a member tomorrow. xx

All the best xx  Keep agitating with your team, if you believe the removal of the primary will benefit you both mentally and physically xx

Mez_BCNA

@Ballerina33 accepting your requests now. Reach out if you need any further assistance 

gumnut

hi @Ballerina33
like you, I have mbc and was in a huge quandray when the question of surgery was raised
my oncologist was in two minds about surgery as, as they say, there is no evidence to suggest that it will extend your life. Such a different perspective to what we all expect to do - get diagnosed, get surgery, have chemo and move on.
My bc surgeon was very adamant about having the surgery, so that is what I had in the end. It was also during covid so the surgery was not done immediately.
Eventually had the surgery - mastectomy + implant - done. I found it extremely an emotionally difficult decision and it took about 6 months to feel back to normal again, but now I don't really think about it too much. 
The BCNA private group 'Choosing breast reconstruction' is a wonderful space to gleen information, I also looked at a few websites and FB pages. There was a good website which I will find and send to you. I read lots (especially medical based journals & papers) and then made the best decision that I could with the advice that I had.
It is a very personal decision. Whatever you decide will be the best for you.
PS have you listened to "what you don't know until you do" podcast on bcna? It is excellent
all the best
xx

Ballerina33

This is so helpful thank you for responding and yes I would love any links you can share. My understanding too is that the survival data is so old (10-15 years) that clinical decisions such as this take a VERY skilled practitioner to take into account the age of stats, new treatments and many doctors are very head in the data and linear decision makers. Its such a challenge to be a better thinker than your dr

gumnut

Hi @Ballerina33
I remember the other website now - if you click on the BCNA Choosing Breast reconstruction group (or join if you haven't) and scroll down there are two links - one is the the BCNA Breast Reconstruction page, the other one is to the Reclaim Your Curves website - that was the one that I couldn't remember but accessed and read prior to surgery.
There is also a BCNA Flat Chat - No Breast Reconstruction group which I didn't join but may be worthwhile for you to look at
The BCNA Breast Reconstruction page had many stories and amazing photos - ladies were so generous to share their experiences and photos.

I did join a Going flat FB website which was also helpful in making my decision.

I had planned to not have a reconstruction. I thought it would be fine to not do that but my surgeon:
1. explained that he would only do the surgery while I was well and relatively healthy and
2. what could happen if the bc came back in the breast and spread further, then I wouldn't have the option
3. showed me photos of ladies that had no reconstruction.
It can minimise the tumor load and also help some people psychologically - which correct be correct for some
but I didn't want to not have the surgery then later on, if the bc returned, not have the option.
As everyone tells you, it is a very personal choice.
My oncologist said that the surgery won't necessarily save my life.

I also thought that I would prefer to use my own body fat etc but I didn't have enough so had to have the implant.
Also the surgeon advised that if we did try to go ahead with the surgery where you use your own body fat/muscle it is a longer surgery with a much longer recovery time and when we weighed up all the options, the quicker surgery with quicker recovery time was a better choice for me. I did have some complications in hospital as I am on asprin due to a heart condition and had very low bp following surgery with a blackout, icu for one night, cardiac ward for 3 nights then a shared ward in the public hospital for about another 3 nights. I retained a lot of blood/fluid around the implant due to the asprin which the surgeon has to draw out in his surgery with a needle. I did really worry about the surgery as I had not had any prior to this.
I made the best decision that I could with the information that I had.
Do you have a MBC nurse to talk to? if you are regional like some of us, there is a McGrath mbc nurse available over the phone.
I tapped in to all the resources that I could. Including those out of my area.
have you thought about another opinion?? or opinions?
all the best with your decisions