New to all this - TNBC

I'm very pleased to see that my advice to Natty about discussing platinum based treatment has resulted in her getting that added to her protocol. It's possible that her oncologist might have offered this anyway but it sounds like going in there well informed has resulted in an improvement to what she was offered.

I completely agree with you Dee. I feel the same way about just missing out on having a platinum based treatment added to my chemo protocol. This might have given me a pathologically complete response which would have significantly improved my survival odds. 

Now there's talk of a vaccine to prevent recurrence. I sure could have used that too!

I suppose the down side of cancer treatment is that no matter when you have it, there will always be something better just around the corner. On the up side, that's proof that there's lots of great researchers out there improving things for the women that come after us.

It makes me sad that I couldn't have the treatment that was only months around the corner but, like you, I know that I was offered the best available at the time and that's going to be the case for everyone, no matter when they start treatment.

I feel compelled to share what I know about 'current best practice' because doctors are very busy people and some are also reluctant to change until they've seen others doing so. Going into a practice well informed with information is the best way to ensure that you really DO get current best practice. I travelled to Sydney for treatment because I couldn't get neo-adjuvant treatment where I lived. I met women at 'Look Good Feel Better' that had been treated locally and the only thing they were offered was mastectomy followed by chemo and radiation. I didn't know what to say to them. 

Hi Meg, about six months ago i read about the more recent research relating to better outcomes for TNBC survivors who had chemo prior to surgery - but this was 12 months post my surgery befire chemo treatment regime! I asked my medical oncologist about it and he said that if i was newly diagnosed now they would likely do neo-adjuvant treatment (chemo first), but he said that since new information and best treatment regimes are being updated all the time that you just need to go with the best current practice at the time. I have found this difficult knowing that I may not have had the 'best' treatment regime but i also know that they must treat based on best current practice. So to all you women like myself who had the adjuvant therapy treatment, stay strong and full of hope - we had good treatment still based on the current knowledge and best practice. Dee

Thank yo Meg will look into this as I have time before surgery to decide what to do!  So much tolook into but without this blog I woudnt know where to start!

Many thanks,
Nat xx

I would like to recommend that those of you being told that you need full node clearance enquire about sentinel node biopsy. This is a relatively new process but widely performed by many surgeons. They inject you with ink which travels from the tumours to the nearest lymph nodes. They remove those and biopsy them during surgery to see if there's any evidence of the cancer having travelled to them. If there's no cancer they leave your lymph nodes where they are. This has some important implications for your long term quality of life because removal of lymph nodes significantly increases your risk of lymphodema (although radiation therapy can also cause it). 

Sentinel node isn't available everywhere but some women have travelled to have it. 

Some women opt to have either a single or double mastectomy for their peace of mind. I completely understand this. My breast conserving surgery ultimately became a double mastectomy but I'm not sorry that I went with my first option and tried to save the breast. It's still important to know that the evidence on mastectomy is that it will not improve your survival odds against having breast conserving surgery and radiation. It's rare for someone with triple neg NOT to have radiation, regardless of the surgical option. Radiation to a conserved breast is also likely to have less burning and blistering that radiation to a mastectomy site. 

Even more important is the research showing that if you have a mastectomy BEFORE chemotherapy for triple neg is makes your survival odds WORSE. All the research on this is available on the Triple Negaitve Foundation web site. It's such important information because, instinctively, you just assume that having your breasts removed will be the safest option. It isn't. 

If you have neo adjuvant chemotherapy and then opt for a mastectomy your survival odds are the same as they would be for those that have breast conserving surgery and radiation. Some women still opt to have mastectomy.

I hope this is helpful.

Meg

X

Hi Nay,

I'm new to all this too...was only diagnosed 2 weekes ago with TNBC 8cm IDC Grade 3.  I've had a whirlwind of appointments, tests, scans, core biopsies, and a range of emotions and in the past 2 days another ultrasound with a clip inserted and today a procedure for a infusaport so I can start my chemo on Tuesday!  

I as much research as the time allowed me and had 2 opinions about treatment along as shared it all with my GP (who is just amazing).  I have opted for what I feel suits my cancer journey!  I am having neo adjuvent therapy which is chemo first and then regardless of the tumors size I have chosen to have a double bilateral mastectomy although my surgeon is leaving that up to me for when that time comes, but I must have a full node clearance on the left where the tumor is.

I am very scared about what is coming my way with the chemo by from what I have heard some people do okay with it...will find out Tuesday and will keep you posted how I go!  Feel free to message me anytime or blog how you are going!  We are all in this together in a weird way and without this site I dont know what I would be doing right now as I find comfort in just getting things out or asking questions etc.

Take care now and all the best for the surgery!

Nat xxx

Hi Nay,

I'm new to all this too...was only diagnosed 2 weekes ago with TNBC 8cm IDC Grade 3.  I've had a whirlwind of appointments, tests, scans, core biopsies, and a range of emotions and in the past 2 days another ultrasound with a clip inserted and today a procedure for a infusaport so I can start my chemo on Tuesday!  

I as much research as the time allowed me and had 2 opinions about treatment along as shared it all with my GP (who is just amazing).  I have opted for what I feel suits my cancer journey!  I am having neo adjuvent therapy which is chemo first and then regardless of the tumors size I have chosen to have a double bilateral mastectomy although my surgeon is leaving that up to me for when that time comes, but I must have a full node clearance on the left where the tumor is.

I am very scared about what is coming my way with the chemo by from what I have heard some people do okay with it...will find out Tuesday and will keep you posted how I go!  Feel free to message me anytime or blog how you are going!  We are all in this together in a weird way and without this site I dont know what I would be doing right now as I find comfort in just getting things out or asking questions etc.

Take care now and all the best for the surgery!

Nat xxx

X

I must be having a chemo brain spell!

website is called: www.skincancer.org

Silly me!!!