a Newbie needing reassurance

SoldierCrab

@KathSeward

Hi Ladies Kath is new and needs our support she intitially posted on my profile thought I would open her a discussion here .... 
Soldier Crab 

KathSe

Hi , newly diagnosed  triple neg 9 mm picked up
on routine MAM no lymph involvement have just finished AC and imagining the worst ! Help

SoldierCrab

Kath I just replied to you on the comment you left me sorry I was having problems it uploading. 

primek

Hi Kath. Glad you found this site. Know that I am only a phone call away. Many ladies here who will give valued support. Kath x

Hopes_and_Dreams

Hi Kath, So sorry to hear of your diagnosis.  I can't offer any information about triple negative breast cancer (I was E100%, P95%)  but just wanted to welcome you and wish you all the best with your treatment.  I know you will find a lot of support and advice from the amazing women who post here.  It is a wonderful environment to vent, question and laugh (yes, we do laugh sometimes! ).  Take care, Jane x

Hopes_and_Dreams

Soldier Crab, thank you for introducing Kath to us.  Jane

Deanne

Hi Kath,
So sorry you are feeling so anxious. All the ladies I know on here who had a triple negative diagnosis are doing well, several years down the track. The "good" things about triple negative are that it responds very well to chemo and very rarely recurs once you get to 5 years post diagnosis. At least one lady on here ( @mum2jj) has reached that magic 5 year milestone. I am sure you will hear from others who are doing well too ( @Michelle R). 
This is a wonderful network for support and information. It has helped us all to navigate this difficult time in our lives. Hope that you find lots of support and best wishes for your treatment. Take care. 
Deanne xxx

Michelle_R

Hi Kath,

I am a triple negative too, and as Deanne says it responds very well to chemotherapy. It's good that you were diagnosed so quickly, with no lymph involvement and a very small tumour.  It is now 4.5 years since I was in shock as you are, and the cycle of treatment began like a roller coaster.  Don't go to Dr Google - a lot of the information on TNBC is outdated - these days there is a lot of research going on and Australia is at the cutting edge. It is natural to feel afraid and I remember the sleepless nights well - but it gets better!  Just take one day at a time, appointment to appointment, and don't look too far ahead or you can get overwhelmed.  I had chemo and radiation but my lump was bigger at 3.5cm with no lymph involvement.  Do you have your My Journey kit yet?  You can order it here on the site and it is invaluable.  Come online whenever you need support.  We are here for you.  Big hug. x Michelle

KathSe

thanks Michelle,

They keep wanting to give me ant tehretidepressants but I really dont want to go there.  Reassuring to know that there ares uccess stories out there

KathSe

thanks ladies,

just soo flat and scared.  How do you get past that

Michelle_R

Kath, meditation cd's can help you to relax, or there are plenty on youTube to download.  They help you to switch off and relax your mind.  Sounds too easy, but it works.  The Cancer Council has them also.  Might be worth trying, especially at night.  x  Michelle

Pinkkittykat

Hi Kath, I was also diagnosed as triple negative in April 2016 initially told tumour was1.5cm surgery revealed it was 3.5cm but not in lymph nodes. It's a roller coaster ride for sure but you ride it, you will have good days and there is those off days but you soldier on relentlessly. Please don't go to Dr Google it just doesn't help, instead it's one day at a time, I don't plan too far ahead apart from appointments, my mother is also a triple negative breast cancer survivor 6 years on now and she is doing well, we have come a long way in treatments, take care Sophie 

xpataus

Hi Kath. I am so sorry you are struggling with this. It's awful, it's unfair and it stinks! But you are not alone - we all have, and still are facing daily challenges and fears. I was diagnosed with stage 3 invasive ductal HER - in late August and had a mastectomy and lymph node removal 3 weeks later. It happened so damn fast! And I'm due to commence chemo in the next few weeks (Yeeks!!). As the other women have said things do shift and change.
I was absolutely terrified, sad, crying all the time and feeling at sea. I requested the Breast Clinic managing my case refer me to a psychiatrist and it really helped me with dealing with the news and pre-surgery feelings, plus also a few of the horrible things that happened straight after my surgery (being left by my partner, and other nasty scenarios).
Ask you GP to refer you immediately. Don't wait. Australia has incredible mental health care support for cancer patients, and I find it really useful to get past the hurdles as I approach them.
Meditation, taking yourself for walks on the beach, or in a park are good for you. Revel in the very simple things in life. Rekindly friendships and reach out. I asked all my old pals to post funny stories plus pics of fun times on my facebook page and the memories buoyed my mood so much.
I also found playing with animals cheered me up. I borrowed my cousin's cat post op' and held that furball tight. He curled up and purred over the surgery site, which felt amazing and I called him my nurse. Now I have my sister's staffies to play with during the journey of chemo and radiotherapy.
As this unfolds you will be amazed at how strong you actually are, and do reach out to us all here. We are in this together, and you are not alone.
Hugs. Karen xo

KathSe

thanks everyone.  Its soo bloody hard isnt it.  Im try to focus on the good prognosis, caught on routine mam no lump small tumourgreat margins sentinel nodes clear, Breast and abdo MRI clear and breast and abdo CT clear but I wish the oncologists were more consistant in their staging and follow up.  Some people have pet scans and bone scans as well.Fell ok physically have dropped 12 kgbut still worry they may have missed something

cheers

Kath 

SoldierCrab

@KathSeward
 is it normal to worry that they have missed something.... part of the weight loss can be our stress in the situation. 
IT is bloody hard.... 
hugs Soldier Crab 

xpataus

Kath, My staging tests were done in two sequences. 1) Bone(Scan), Lung(Chest x-ray) & Liver(Blood Test) as they are the first port of call on diagnosis when they thought it was stage 2-3. Then after surgery when they had the pathology on the tumour clarified as TNBC stage 3 they ordered: Head, chest, abdomen and pelvis CTs. I had to argue for the head CT. The surgical team doctor was dismissive. So I said that I'd get my GP to order it if she wouldn't and pointed out that would mean two sessions of dye that I'm extremely allergic too for me to deal with, and she conceded to do all four at once. So the latter was ordered 5 weeks after diagnosis and after surgery. I lost weight in the pre and post op period from stress and while taking pain meds I'm sure. I think the staging is really done based on the type of cancer and the stage. Ask to have it explained, and I suggest you write down the questions before and take a bossy friend/relative to ask the questions for you. Even if the question is why aren't you doing full sequence CTs. It helps!! Hugs.