triple negative

greyhound

Hello to all you lovely ladies who have also been affected by a diagnosis of breast cancer.
I am 57yo and had a routine mammogram recently which showed an area in one breast that looked abnormal. I cant feel a lump and neither can the Drs so its early stages.
Biopsies done and a triple negative diagnosis confirmed last week.
I have been on an emotional roller coaster since...having MRI, PET scan and genetic testing.
I've been told not to google it.
I can read between the lines that its a difficult breast cancer.
It would be lovely to hear some positive stories or words of wisdom about this breast cancer to help.
I am super anxious and wanting treatment to start ASAP...still no date to commence treatment.
Thankyou in advance

Afraser

Dear @greyhound

I don’t have triple negative but never felt a lump either. There are many ways bc can first be detected and a lump is just one. Don’t google. My symptoms screamed inflammatory breast cancer, according to Google. I didn’t have it. Having a medical team that you like (everyone responds best to different things) and trust is really important. So is feeling things are moving at a reasonable pace. There can be a lot of waiting involved with cancer but we all work out what’s reasonable and what is not. It’s perfectly possible to be a polite person but also to be ever so politely persistent! You are your own best advocate. Best wishes for a good medical team, good treatment and focus on the future. 

FLClover

Hello! It’s thought to be more aggressive in the sense that it can grow quite quickly. This is why it’s important to push for treatment and surgery if it seems to be taking too long. It also doesn’t feed off your hormones, which means the only treatment available is surgery and chemo. That’s what I know about it. I also know I’ve read quite a few success stories, with ladies having beaten it and cancer free 10+ years. It does sound like it’s in the early stage too. 

There are Facebook groups for this type of cancer that you could join, if you’re on Fb. 

Deep breaths to keep as calm as possible, and def stay off google. It’ll just scare you unnecessarily. Everyone’s told to stay off it for good reason. 

❤️

Cath62

Hi @greyhound, sorry you find yourself here with all of us. This is a great support place and no judgement. We are all here to support you. I didn't have triple negative but I agree with @FLClover about what treatment means for it. Breast cancer is so complex but remember that treatment these days are so much better and more effective and continue to improve. Take one day at a time. It can all be very overwhelming at the start. There is so much to learn about it, new specialist, nurses  terms etc to understand the treatment and what you can do. Be kind to yourself and take deep breaths. You will get through it. Please ask any questions you have of your dr, nurses and with us here. Best wishes 💐

iserbrown

@greyhound

If you click on this link, previous discussion on Triple Negative you will find others and links

https://onlinenetwork.bcna.org.au/discussion/23810/triple-negative/p1

Best wishes 
Take care

greyhound

Thankyou for your comments.
Im definetly persistent and i do it as pilitely as i can.
So far everyone has been very helpful but it's possibly the private system...it's under staffed and under funded.
Unfortunately I don't have private insurance.
I'm thinking if I did things May be moving a bit quicker.
I know they have to cover all bases to make sure the treatment is right but what is a reasonable time from diagnosis to starting treatment?

FLClover

Well, everyone’s case is different. I was diagnosed on 20/02/20, and my surgery was on 01/04/20. But they thought I had DCIS, low grade. Plus it was hormone positive, HER2 negative. I think with you they might want to start chemo first, I’m not too sure. Either way, I wouldn’t want to wait more than 2-3 weeks for something to happen. But then again, that’s just me. Im not a doctor. It’s only from comments I've been reading about it in places like this. Use your persistence to get things moving if you need to. I didn’t have private health cover either, so I used my super to pay my surgeon privately. The hospital agreed to treat me as a public patient, so I didn’t have to pay for that. I didn’t do chemo, but I did radiation and saw an oncologist for hormone treatment, all for free too. It was at Genesis Care and the Kinghorn (Sydney) which I think are private, but also accept patients publicly. I’m not sure how. I got appointments very quickly and treatment started quickly too, once I was ready. This was in 2020, but be persistent anyway 💟. 

Julez1958

Hi @greyhound - I love your pen name! I am more of a Labrador.
I am 63 and was 62 on diagnosis ( September 2020).
I didn’t have triple negative but had ER positive lobular cancer.Most breast cancer is ductal.
I understand post menopausal women are more likely to have ER positive cancer and younger women more likely to have triple negative but that’s just a generality - everyone is individual and will get an individual treatment plan.For example I didn’t need chemo but that seems universally prescribed for triple negative.I did have radiotherapy which they do not often do with a mastectomy but I was recommended it due to the size of my tumour.
My treatment was in the private system and my surgery ( mastectomy)  was 5 weeks from when I first saw my breast cancer surgeon ( I had received my diagnosis from my GP a few days earlier.)
They had to do lots of scans and tests on me first to see what the treatment plan should be and I lost a week with a cold and had to get a Covid 19 test etc.
The anxiety of waiting for all the various results is very stressful and even though my surgeon said my cancer was extremely slow growing and had been growing there for a while I just wanted it OUT!
We do have world class Drs in both the public and private systems  in Australia but that  doesn’t mean everyone always gets a 100 percent grade A experience and sometimes you have to advocate for yourself.
Take care.

Ausmum2

Hey @greyhound

Just sticking my hand up as a trip neg sister.
 

I’m a 55 and “unusual presentation” as I was a cystic (blood filled cysts it turns out) that when biopsied said “fatty necrosis” and it was only after the lump got bigger and grew a mate, that the mate gave the gig away a little. It then put me on an MRI and all went downhill after that until nothing was a “fatty necrosis” anymore. 

Tumours measured 75mmx35mmX35mm at excision. By a miracle I was node negative.  

I’ve done: 
A double  mastectomy
4AC and 12 Paclitaxel for chemo 
then 5 weeks of daily radio (including central, subclavicle and arm pit lymph’s) 
and a radical hysterectomy
treatment took around 12 months to complete in full. 

I was staged 2B (with a PT3 N0) 

I’m just doing 12 month scans etc now and am doing ok so far. A few niggly things that we are just sorting out what they are. 

You’ve got this. I found the testing phase up to chemo was the biggest roller coaster. 

Message me if you like. 

greyhound

Thankyou ladies.
Ill be chasing up tomorrow about an appointment with an oncologist as I havent seen one yet....only the breast oncology surgeon.
If I knew of a good breast oncologist in Melbourne I would chase up privately.
Any ideas on finding recommendations for Drs who specialise in breast cancer

Keeping_positive1

@greyhound which hospital are you going to?  It is often the clinical staging in the public system that can be drawn out, as many here have experienced.  I went public and saw some really good oncologists and some would no doubt have their own private rooms.  I can give you the name of one that I know many find is easy to communicate with.  I will pm you if you would like, let me know.

greyhound

keeping_positive1 that would be amazing. I'm going to Peter Mac in Melbourne.
I haven't worked out how to pm on here yet. lol
Thankyou

Afraser

@greyhound

Hi, to pm someone, just go into your inbox and hit new message. You only need the BCNA name - like @Afraser. There are prompts to help. 

greyhound

thankyou. yes I just worked it out. lol

Keeping_positive1

I just pm'd you @greyhound and I will tag @Lisa1407 in and see if she can help you further also.  I have noticed she goes to Peter Mac and speaks highly of her treatment there.  

Lisa1407

Sorry to hear your news @greyhound. I have been having treatment at Peter Mac for over 6 years now and I mostly love the place. Some things you have to wait far too long for (like blood collection) but staff are always so apologetic. There are great breast oncologists at Peter Mac. I see Sherene Loi and she is fantastic but any of the others are good too. They all participate in research which means they are across all of the latest treatments and your case is discussed and treatment decided as a group. I am not triple negative and about 6 years ago I was glad about that. However, they have been focussing on a lot of new treatments for triple negative breast cancer as there was a real dirth. I now think there are more options to try if you are triple negative!! I am currently at the end of all of the oral treatments, have been unsuccessfully mucking around with a trial drug and so will now need to proceed with my first IV chemo. I feel a bit scared as this is the first time since diagnosis that I have had to inch closer to the expected and dismal prognosis.  Ohh and do keep ringing if you are waiting for an appointment. I have found it only helps and they won't hold it against you as they understand how stressed you must be. Also, it depends on what treatment they will be doing as to how long they will make you wait. Some treatments they may want your mastectomy to be fully healed (but you will be getting close to that stage anyhow by now). Good luck Lisa