Triple Negative
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Hi Kellee
I was diagnosed at 51 in May 2015 with a 4.5cm triple neg tumour. No lymph nodes effected though I had 3 removed. I had an immediate skin sparing mastectomy with an expander (so I could have breast reconstruction later). I had FEC-D - 3 rounds of FEC every 3 weeks and then 3 rounds of docetaxol every 3 weeks. This was followed by 25 rounds of radio as the tumour was in the chest wall and muscle. 15 months later I had the other breast removed and DIEP reconstruction (Tummy tissue). After nipple recon and tattoos 6 months or so iI then had my remaining ovary removed. I had previously had a hysterectomy and left ovary removed for a benign cyst. Its been a tough ride but Im please to say Im doing very well 3 or so years later.
Look at it as, chemo stopping any rogue cells in your body and radio and mopping up any in the breast/chest area.
Try and look at your lifestyle, diet and exercise as being as healthy as you can be can only help. Please dont google or look at statistics as they can be out of date. Also whenever I seem to meet a group of women there is also another TN one.
The onco text wasnt available in australia in 2015 but my attitude is that i would have had chemo anyway as this is the time to stop any your cells dividing/spreading.
Chemo is tough but doable. I was also terrified but it wasnt as bad as I imagined. The nurses are very good with needles. Its what they do all day remember.
Annmaree xx2 -
Hi @Kellee,
sorry I missed this post. I was diagnosed with triple neg 9 years ago (yesterday) see recent post.
I had a 3cm aggressive tumor, and one positive lymph node. I went on and had a lumpectomy, chemo and radiation. Unfortunately I did have a recurrence 18mths later about 2cm from original lump. It was also 3cm. I am not telling you to scare you, but to let you know that even with this shitty diagnosis and treatment, there is hope, even after a recurrence. Sadly (at the time) I went on and had a mastectomy and then immediately more chemo. You know at the time, I was so scared the cancer would be elsewhere in my body, that when I found out it wasn’t I honestly didn’t worry too much about the mastectomy or even the chemo. I just wanted it out and treated...FAST.
No chemo wasn’t a barrel of laughs and having to do it twice in such a short interval was not ideal, but I did it, and here I am 9 years out from 1st diagnosis and 7 1/2 years out from second and I am here to tell the story.
sending you a huge virtual hug.
Paula xxx5 -
@Kellee it looks like we're both in a very similar place. I had a lumpectomy two weeks ago and also have an oncologist appointment next week, mine's on the 11th. Chemo has been on the table for me since my initial GP diagnosis and my surgeon confirmed it will be necessary. I'm ok (well as ok as you can be) with it. My mum went through chemo for bowel cancer when I was in my 30s and I know it will be rough but I understand the drugs to help with the side effects have improved a lot over the years. I think anything I can do to stop the little fecker coming back will be worth it!I'm sure we'll be in touch and able to help each other through this xx1
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Hi @mum2jj @AMM5 thank you for sharing your experiences. Very appreciated. I thought I was travelling okay until this afternoon. My oncologist sent me for a CT scan and various heart and blood tests this week. I received a call late this afternoon to say my CT scan showed 3 nodules in my lungs. I’m booked for a PET scan on Monday. Major emotional setback. I’m really worried as I’ve been experiencing upper back pain. After my bone scan came back clear I figured my pains were muscular. So you can see where my brains going with this. My anxiety levels have truely peeked 😢0
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Ah @Kellee that sucks. This is such a prick of a disease.
Try as best as you can to stay in the moment and not cross any bridges until you get to them. Are you with good support people this weekend?
You are very stressed. Most people carry their stress in their upper backs. Could it be you're doing that?
Hang in there lovey. Take some deep breaths and plan to do something good tomorrow and Sunday. Kate xox1 -
Thank you Kate @kmakm I actually considered wether my pains can be stressed related. I’ve lived with mental illness most of my life. The pain in my upper back is not new, but it has gotten a lot worse since this whole ordeal began. I think I’ll get some sort of relief when treatment begins. At the moment I’ll be having 6 rounds of FEC-D. 3 rounds of FEC- 21 day cycle, then 3 rounds of D - 21 day cycle, then radiation for 4 weeks. I haven’t been given a starting date yet. It’s 6 weeks since surgery (last Wednesday) and I’m still experiencing breast pain. Hopefully I’ll learn something next week.
They told me to try and relax over the weekend in preparation for the PET scan. Not to do any vigorous activity. Apparently they get better results. I guess I’ll have to cancel my regular weekend marathon 😂
Thank you for your positivite suggestions xxx0 -
Oh bugger @Kellee I’m also booked in for a CT on Monday and a bone scan as well as I’ve had hip issues for a while which I think / hope are running related but oncologist wants to be sure.
Otherwise appointment went ok. Treatment plan is 4 x fortnightly Dose Dense AC then 12 x weekly paclitaxel then 6 weeks radio. I had the first treatment yesterday which went ok.
I’ll be thinking of you xx0 -
So what are the relaxation plans @Kellee? A beauty treatment, a massage, a walk in nature, a long bath, a binge watch Netflix marathon? Maybe some meditation? Being kind to yourself, some self care, is important in managing this disease. I've taken my own advice (for once!) and have just had a pedicure. My toenails are horrible from the chemo damage. I lost three and one of them in particular is still a weird ass stump with a huge ridge. The warmer weather this week meant sandals are in the horizon so I thought I better do something about my feet! So relaxing. I used a voucher one of the kids gave me at Christmas.
Look after yourself lovely. K xox
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Wow @Mantis you’ve already started. It’s amazing how many different chemo plans there are. It’s been over 6 weeks since my surgery and I still don’t know when chemo starts. I hope Mondays PET scan doesn’t change anything.
I have both hip and knee issues as well as inner ear issues and everything came back fine, all the parts I was worried about. Instead my issue is in a part I never considered.
Glad things are going well for you xxx0 -
I actually gave myself a foot soaking today @kmakm I tried to nanny nap but it was too warm. 32°c in Port Stephens. Hubby and I went on a Bunnings expedition then came home and Netflixed the afternoon away.
Love the nail polish colour, I was never blessed with beautiful nails so I usually keep them short. Sometimes I opt for the false nails but I usually only last a couple of months before they drive me mad lol. They’ve only just recovered from the damage of false nails. So much to look forward too 😂
So glad I was introduced to this forum, I didn’t think I would like it but I have found everyone to be so positive on here. It really puts me back on the “thinking positive” track. Thanks so much for your advice xxxx
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