Triple Negative
Comments
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@Kellee It took me a while to find my feet here. I didn't want to join, I was so resentful of having BC. But it kept coming up in Google searches. I lurked for a long time and eventually I had a question that had to be answered and I never looked back. I have felt far less alone as a result, and it's taken a load off the shoulders of my friends and family. Not to mention answered a gajillion questions!
We're all here for each other, we've got your back.
Now never mind BC, what did you get at Bunnings and what did you watch on Netflix?! K xox0 -
I know that feeling @kmakm I went shopping the other day and every second billboard was about breast cancer. It’s like a big bad stalker!
i splurged on some tape dispensers for my daughter, $1 each. She’s in the process of buying her first home, I thought they would make packing boxes easier. No other Bunnings Bargains today, although I did meet a few cute puppies.
Lucifer all afternoon on Netflix. We just finished watching Grimm. If I can manage to hijack the control I like to watch all the girly shows or real life crime shows.
Oops, look at the time, where did it go? Happy Sunday xx0 -
Love a good tape dispenser!1
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Hi all
obwas diagnosed with TNBC in late March. I have just finished 6 months of neiadjuvant chemo and awaiting surgery.
I notice a lot of you have had mastectomy but my surgeon wants to do a lumpectomy and level 2 auxilla resection. I’m stage 3 and have lymohnode involvement. My surgeon assured me survival rates were the same for lumpectomy and mastectomy. And also that a six week wait until surgery is ok.
I’m feeling very overwhelmed by it all today. I don’t know if this is the best treatment?
I feel like I’m playing roulette a bit.
Many words I’d wisdom from other experiences?0 -
... sorry for all the typos!0
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Hi there @Jezabel ...sorry you've had to join this crappy club, but you're amongst friends here. I was diagnosed with stage 3 grade 3 triple positive with lymph node involvement on the left side (Multifocal tumours in left breast). I was told I had "abnormal geography" on the right side, where they wanted to do a shitload more biopsies and whatnot. I also had neoadjuvant chemo, followed by The Big Chop. I was unable to have radiation due to other pre existing medical conditions, so a full mastectomy on the left was required. However, I had to push hard to have the suss right one removed too as the surgeon said they would just do the biopsies, and then maintain a very watchful eye on it thereafter. I insisted that I felt threatened that it too would go feral on me, but was also quoted the same as you regarding overall statistics. I told her that statistics meant nothing to me, my peace of mind did. I told her that in my past, I was a very active skydiver, with over one and a half thousand jumps under my belt. I only ever had one reserve ride, so less that one in a thousand chances of my having a major malfunction, but I was sure as hell happy I had a reserve. For me, to leave the right breast, with its as yet undiagnosed abnormalities, would be like knowing that a sex offender lived next door to me, and what's more, had a key to my front door. I couldn't care less about reassurances that this person would have to report to his parole officer weekly, or that he had a tracking device on his ankle, so they were keeping a very watchful eye on him. (Used her exact words back to her). I told her I would never feel safe under those circumstances, and that I felt the same about the right breast. It had to go. After putting my case to her in this way, she agreed to do the bilateral. Just as well, as the post surgery testing showed multiple areas of pre cancerous cells. You have to do what feels right for you. The breast belongs to you, not your surgeon. Take their advice, of course, but do what feels right in your own gut. Good luck with your ongoing treatment. Ally.
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Welcome @Jezabel. I can't comment on the tnbc but there's a lot of ladies on here who can. I have had a mastectomy on the offending breast and I have to admit to being highly suspicious of the other side. I did start off with a lumpectomy and sentinel node but the surgeon was always clear that, if there was the slightest evidence of a problem, I would need to go back in for further surgery (he did a beautiful job). Well, a supposed 2.5cm tumour was in fact a 4.5cm tumour with no clear margins, and no node involvement became 3 nodes positive so back in I went. In the end, it's your body and your peace of mind but do listen to the surgeon's advice (get a second opinion if you need to) and take it from there.1
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Thanks Sister and Allyday,
It’s good to hear other stories and what people have done. I always find I think of things to ask after I’ve seen the surgeon.
I have a 13 year old daughter and just want to give myself every chance. I had stage 1A ovarian cancer a year ago and now stage 3 TNBC so I’m quite freaked out about it all and feel really anxious at the moment waiting for surgery.0 -
I know how you feel @Jezabel it has been 7 weeks tomorrow since surgery, way to long to be living on your nerves. My TNBC was grade 3 but only stage 1 thank goodness with no node involvement. After my visit with my radiologist i walked out wondering wether i should have had a mastectomy. Then along came all the scans, one that came back with abnormalities in my lungs, 3 nodules. I had a PET scan yesterday, and the good news was it was NOT cancer @kmakm @Mantis @onemargie I swear i did a happy dance. I cant believe how relieved i felt. Ive been playing music all morning lol.
I agree with @Jezabel its important to do whats right by you and what ever gives you peace of mind xxxx4 -
Hi there @Jezabel . I sent this message to another lady that asked me about my double. I also had TNBC may 2016 aged 43 stage 2a grade 3 no lymph nodes involved all scans clear 8 rounds of dose dense chemo. (4 rounds of AC and 4 of paclitaxol 2 weeks apart). Negative for the gene and no family history
Please remember this was my decision and the right one for me but may not be what you want or may not be right for you ok. Like @AllyJay i wanted piece of mind and I chose to have my first mastectomy for the following reasons -
I had a 3cm tumor left boob and only B cup boobs and because of where it was and I was going to lose my nipple anyways I just did it. That had always been my lumpy boob and I was sick of always stressing about it and I also didn’t want to have chemo as well as rads. Less treatment the better I thought.
I had the second one off 6 months later as my guts told me too its that simple I had a referal done through the public system but the wait was going to be at least a year or even two at the Royal brisbane so I said fuck that I wanted to get it done and get on with my life its “not recommended” to have the healthy boob removed and I said i dont care I want it off. I have no regrets at all about my decision love whatsoever. I’m a nurse and I wanted to reduce my risk as much as possible. That’s it. But remember many women keep their boobs for various reasons which is totally fine and I totallly respect that it’s just not what I wanted to do.
So I went in as a private patient in the public system in qld I paid the overnight bed fee ($350) up front and didn’t get the rest of the bill til around 8 weeks later and all I had to pay was the gap fee so it was only a few hundred bucks out of pocket.
I was told I didn’t need my ovaries out only if I was positive for the gene which I wasn’t. I’ve had a hysterectomy in the past but kept my ovaries but they assured me it wasn’t necessary as I was triple neg and not hormone receptive.
The only regret I have sometimes or and sometimes not for me is the fact I didn’t have the immediate recon. I’ll be waiting at least another 12 months for that and that’s just for the first procedure the changeover will take at least another 12 to 18 months after that. At the time a new set of tits was the last thing on my mind. Had I known the wait would br so long I may have done it. Who knows. Sometimes I don’t know if I can be bothered with the surgery anymore, time off work etc then sometimes I want it done!
Liaten to your surgeon but trust your guts too and do what’s best for you that’s it. Hope this helps. Margie. Xxx
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