Triple Negative

Hi @SoldierCrab I was just looking back at my triple negative post and noticed you had a TNBC. I visited the radiologist today to prepare me for radiation therapy, I don’t see the chemo oncologist for another 2 weeks. I must say I’m feeling very emotional as I learn more about triple negative. I think, at last, my diagnosis is starting to sink in. I’m still experiencing a lot of pain from surgery (4 weeks ago) and I’m booked to have another ultrasound in 2 days to make sure there’s nothing going on inside. The radiologist wasn’t happy with my surgery scar as it is puckered and pulling my nipple. She thinks I might need surgery to correct it before radiation. She’s going to discuss it with my surgeon. I don’t have radiation until after chemo, she’s worried about surgery before chemo and I’m worried about surgery after chemo. She concerned that if I’m still in pain the radiation will amplify it.
My cancer was only stage 1 but the cancer itself was grade 3. She loaded me with figures and odds on it returning, reassuring me of course, I’m not sure if reassurance works on the brain of a cancer patient cause now I’m more concerned. She said if it returned or if the chemo fails the next step will be a mastectomy. All this knowledge is making my brain sink in that this is very serious. Being in pain for 4 weeks isn’t helping. Did you have any reoccurrence after your first diagnosis.
its hard because you want to know everything than wish you didn’t know. Every 5 minutes the cancer test breakthrough keeps coming on the tv. My bloods starting to boil each time I hear it. 
I know no two cancer or experiences are the same but hearing from someone with TNBC would be more reassuring (I hope) then the doom and gloom on Google for triple negative :( xxx

Thank you @SoldierCrab this information is greatly appreciate xxx

hi Kellee, 
I am nearly 6 years out from diagnosis of TNBC and I had bilateral mastectomy and lymph node involvement.
 I had 9mths of chemo and then 6 weeks of radiation and I am CANCER FREE  with no evidence of disease. 
Take it one step at a time ...... we eat an elephant one bite at at time  look at this the same .... 

here are some links for you 

Below are a couple of links to help you find your way around the forum and also how to find a breast care nurse and how to order a MY journey Kit if you haven't got one yet. 

It can be a whirlwind when we first get a diagnosed.... Breathe and take it one step at a time. 

Navigating the online community formerly the what and how thread.

http://onlinenetwork.bcna.org.au/discussion/14879/navigating-the-online-community-formerly-the-what-and-how-thread

Breast Care Nurses

https://www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx 

My Journey Kits and other resources. 

https://www.bcna.org.au/resources/

BCNA Helpline 1800 500 258

If you have any questions, concerns or require any further information or support please call 1800 500 258. BCNA’s helpline will now be open from 9am-6pm Monday to Thursday and 9am to 5pm Fridays.  

Happy to answer any questions if I can 

Soldiercrab

@SoldierCrab can you share your wisdom. 

@Kellee Big hug  :)

Thank you Kate, @kmakm I have an appointment with my GP on Tuesday, if it hasn’t subsided I’ll ask the doctor.
I agree, panic attacks and anxiety does suck and they don’t care wether things are going well or not. They sometimes just creep up on you. I can tell you where every toilet is in a 60 km radius road trip from my home lol
I did read about the workshop. It amazes me how much support is available. 
I will definitely keep in touch. This forum has been very calming xxx

Hi Kellee love, sounds like you've got your head on straight about the chemo. It sucks, but it's for a good reason, and they've got pretty good drugs for most of the side effects. You just have to roll with the fatigue, do all the mouth care recommended and exercise as best as you can manage through it all (helps reduce the severity of the side effects). If you do have chemo, find out what it's called (it's usually a series of inititals eg AC-T or FEC-D) and then you can get some help from the forum that's specific to your regime.

If you do have chemo you must find out if you can do a Look Good Feel Better workshop. They are pretty fun and you get lots of free make-up to take home.

Well done on pushing your agoraphobia boundaries. It's amazing that you're doing so well at this challenging time. Panic attacks and anxiety suck. Mine's been on the rise for the last 24 hours, not sure why.

My boob was briefly very sensitive and tender as the numbness wore off after my WLE. Why don't you give your breast care nurse a call and check it out with her? Hopefully she can set your mind at rest.

Stay in touch here, and let us know how you get on. Deep breaths, Kate xox

Thank you @kmakm @onemargie I’ve finally been given an appointment date to see an oncologist, September 12th. I have since spoken to the nurses from the McGrath Foundation, who will be with me through my journey if chemo is required, and say it’s likely I will have chemo. I’ve decided to live in the mind set that it’s going to happen rather than hope that it’s not. That way there won’t be any more shocks on the day, I’ve had too many of those lately lol.
Instead of googling or the scary details of chemo, I have a basic idea thanks to the nurses, I’ve been googling wigs, head wear, eyebrows and make up. Just trying to get my mind set in a good place.
I know what you mean by knowing who your friends are @onemargie I have lived with mental illness all my adult life, due to mental abuse growing up, when acrophobia set in and I couldn’t bring myself to travel any further then 15 km from my home I wasn’t any fun any more. I was good for baby sitting friends kids and taking them to school while they worked, but once they all grew up my friends disappeared. Thank goodness I have expanded my horizons, considering the hospital is 60km away. I still have the occasional panic attacks and my anxiety has been pretty extreme the last few weeks, but I haven’t let it stop me. Through tears and melt downs I’ve soldiered on.....so far.
You ladies may be able to help me. It’s been 2 weeks since surgery and my boob has become so sensitive it’s painful, especially my nipple. It’s that bad that the water from the shower hurts. Did you experience this and is there anything you can do or take to ease the pain and discomfort. Thank you again xxx

Hi there @Kellee.  I was diagnosed may 2016 aged 43 with stage 2a grade 3  TNBC in my left boob. My lymph nodes and scans were all clear. I qualified for the gene test as I was under 50 and had no family history of any breast cancer.  My treatment was slightly different from @volunty. I had what’s called dose dense chemo - that means I had 4 rounds of AC chemo 2 weeks apart followed by 4 rounds of paclitaxol two weeks apart. Chemo was shitty at times but doable. I was working as a nurse so took the time off work  as it was peak winter when I  and I didn’t want to delay any treatment by getting crook with some bug.

 it was also discussed early on whether to have the chemo or not but it also significantly reduced my risk of recurrence so it was a no brainer for me. TNBC is a less common type of breast cancer but responds really well to treatment. I had my mastectomy prior to chemo so the cancer itself was already gone. The chemo was done to mop up any strays that may of been lurking. 

I chose to have a mastectomy, I was given the option to keep the boob have  chemo ands rads or have the mastectomy and just have chemo and that’s what I did as I felt the less treatment I needed the better and also because I live brisbane Northside and getting to the Royal Brisbane daily was a logistical nightmare. 

I then then decided 6 months later to take the right boob off as a prophylaxis measure as my guts told me too. This was the right decision for me and one that I don’t regret at all. I also didn’t want the ongoing “scanxiety” as I’ve always had lumpy cysty boobs and I would always be stressing about it. Please keep in mind this was the best decision for me but may not be the right decision for you. Like @volunty she has kept her other boob with no issues.

I am on the huge qld health wait list for recon now, had I known it was so long I may have opted for an immediate recon. I’ve been waiting 2 years  and I’m so used to not having boobs I wonder if I’ll ever actually do it!  so chat to your team and discuss what your options are and then you can do what’s best for you.  You may not even have to go down that path.  My best advice is to keep an open mind, try not to google anything and listen to your team so you can decide for yourself what you want to do. But also trust your guts.

It is doable, you do come out the other side, being bald isn’t that bad and you will soon find out who your true friends are.  I had ones I’ve had for 30 years pretty much ignore me and ones I didn’t expect to step up who did. Delegate where needed, take help and support of any kind  if it’s offered,  Believe me people don’t offer if they don’t want to. And if you ever need to chat please feel free to PM me anytime and I’m happy to give you my number. In the mean time try and take each day as it comes and don’t think too far ahead. Once you have a plan life is easier and you can work your life around it then. And remember there are no stupid questions on this forum, ask any of us anytime anything and there is always someone to help. Biggest hug. Margie xxx 

 

Hi Kellee, I had testing to see if chemo was warranted. On the surface it wasn't, but my bad family history an responsibilities warranted a closer look. I was very lucky that my father paid for the test, known as an oncotype test. It cost $2998 I think. They test your tumour sample to see if chemo would have a curative effect if some cells had escaped and were looking for somewhere else to do their dirty work. The result came back as a clear yes (it's expressed as a number) so I gathered up my courage and did it. After some choice swearwords, a panic attacl and a flood of tears!

Some research has come out recently about the usefulness of the oncotype test. Take your group of breast cancer patients. There'll be a number who clearly need chemo, and a number that clearly don't. And in between there's a group where it is unclear if chemo would help or not. And because we don't know, we err on the side of caution and give the chemo to that entire group. Well the big study has tested a large population of that group in the middle and found 70% of them wouldn't need chemo at all as it would have no benefit. This provides tremendous justification for the government to subsidise these tests because of the enormous amounts of money they'd save, not to mention the suffering alleviated and the ongoing issues such as peripheral neuropathy that would be avoided. It wpuld save the government SO much money! Fingers crossed something gets done about it sooner rather than later. K xox