Diagnosed 2 weeks today & need help with mindset please

TripleTea
TripleTea Member Posts: 59 ✭
in Newly diagnosed
Hi Everyone,

I am a 39 year old mother of 2. I was diagnosed 2 weeks ago and what a whirlwind it has been. I have IDC Grade 3, triple negative cancer. I have had a Lumpectomy  and sentinel node removal and the margin and all 4 nodes were clear. My Bone & CT were also clear.

I was told by my GP of my diagnosis who told me we had not found it early and that my prognosis is "not good". She said "it's not a good type or a good grade. It is an aggressive tumor and most likely to spread" I sat there dazed and then cried. Thankfully since her diagnosis my test results have been good.

I am now waiting to heal from the surgery and then I will be starting 5 months of chemo followed by a double masectomy and radiation. Still so many decisions to make about all of this part but I guess I have 5 months to do it all.

I have handled it all pretty well and after the initial outbursts of tears I am going ok and am confident I will beat this. What Im really struggling with mentally is the Triple negative side and how it brings a higher chance of cancer coming back anywhere in the next 5 years regardless of my double mastectomy.
I am trying to keep positive, and I am mostly but every time I think about anything too far in the future a little voice sais "if your still here" and then it brings me down and scares me. 
 I know its ridiculous and I need to worry about getting through this first but I cant seem to turn it off. Does anyone have any tips about mindset.

Thanks 
Tracy

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Comments

  • brightspace
    brightspace Member Posts: 457 ✭
    Hi tracey bigg hugggs sorry you have joined uu
    We are very lucky tohave joined an amazing group of warmhearted  people who are willing to provide the knowledge and support that is needed....just read posts on..having trouble just coping...lots of support and info there 
     Xo bright

  • melclarity
    melclarity Member Posts: 3,528 ✭
    @TripleTea a big hug and Welcome to you, what a gutwrenching time and it's something we all share with you in this moment! Everything you said was completely justified and so very normal...it's incredibly hard to not lose focus and jet off to the future with all sorts of scenarios because this is just the beginning, its overwhelming on every front! 

    In 2015 I had a recurrence, it was also Grade 3 aggressive IDC but ER+, nodes clear, bones clear, gene testing negative. I had 5 months of chemo, no radiation as I had it in 2011. It is a shock to hear it, absolutely, I was alone and burst into a million pieces in the car before I went to pick up my teenage son from school. He took one look at me and knew it wasn't good...he was 11 the first time and 15 the 2nd, he said will you have to have Chemo...the look on his face and I thought OMG he was embarrassed i'll lose my long blonde hair...NOOOOOO how stupid of me underestimating this beautiful son of mine. He teared up and said MUM! I could give a shit about no hair, I just want you here however you look!! Kids are resilient and amazing and absolutely will rise to the challenge with you, believe me. 

    1 yr after treatment my Specialists recommended a single mastectomy and I did in Feb with immediate diep flap recon, my pathology of the breast was perfect...bittersweet but its about prevention. Im 2yrs on, really getting my life back now it was a tough road but let me tell you, you will get there...one step at a time, dont focus beyond 1 day as you are moving forward. Breathe...take time to nurture you, surround yourself with good people who are genuine, unfortunately many won't get it and will drop off. This is about you now..nobody else..put you above everyone, most important! 

    Hugs Melinda xo
  • AllyJay
    AllyJay Member Posts: 957 ✭
    Hi there Tracy...so sorry you've had to join our 'club'. I was diagnosed a year ago, also Grade 3 Stage 3 but hormone positive, so again, my treatment will differ from yours. Still, mine has a better than average chance of returning with a lymph node also joining the party. Went through six months of chemo, followed by the Great Chop, where the mighty weedwhacker took off both boobs. However, you specifically asked about how we cope with mindset, not treatment options. Each of us differs in how we respond to and cope with things in our lives, and so what may work for one, may be anethema to another. My coping mechanism has always been humour, very black humour. The reality that this diagnosis brought to me was, yes, I am going to die. When? Not sure. Tomorrow....probably not. Next week...nah. Next month....nah Next year....hopefully not....and so on. As a younger person (way back in the Dark Ages), I remember sitting on the table in the nurses' home one night with a bunch of other student nurses. A teenager had died on my ward that day. The discussion was would we rather die young or old and then would we rather get hit by a bus...lights on...lights off...or would we rather know in advance? That discussion went back and forth for ages, with all different pros and cons both ways. My beloved brother died at age 37 at the South African National Skydiving Championships...bad landing. He had time to say two words, and I have a very good idea what they were. Was his a better way to go than mine possibly will be?  I don't know. He didn't have the chance to see his four beautiful kids grow up, on the other hand, he hasn't gotten fat and wrinkled either. I have. But now I face this. How? With a great big mid finger salute to the Cosmic Clowns who shuffle the Cards of Life and deal out out our hands. I mourn my non cancerous life, but just get on each day as it comes. Oh, and at my funeral, whenever it might be, I've stipulated that I wand the same song played as was at my brother's...Queens "Another One Bites the Dust". Sending a great big cyber hug to you and your family.

    Ally xoxo
  • Barney74
    Barney74 Member Posts: 89 ✭
    Hi Tripletea sorry to hear bout your diagnosis this group is amazing.
    Im to like you i have IDC grade 3 also .i caught mine early .ive had a lumpectomy and some lymph nodes removed. I get my results next thursday .its so hard not knowing outcome.
    Take care x
  • nikkid
    nikkid Member Posts: 1,766 ✭
    Hi @TripleTea - welcome but sorry you had to join us. Everyone handles a cancer diagnosis differently and there's no right or wrong. It's just what works best for you. From my perspective, when I was told my diagnosis I said "Well, that's a shit" and my lovely breast surgeon agreed. From that moment on, I decided to allow only emotions, people, experiences that would HELP me, not hinder me. It wasn't always easy, but has worked for me.

    You will navigate your way through this the best way you can......and with the knowledge that nowadays treatments for this disease are so advanced that survival rates are much improved.

    As @melclarity has said, take the time to nurture you, one day, one hour, sometimes one minute at a time. And we will all be here along the way. Big hugs. Nikki xxxx
  • Afraser
    Afraser Member Posts: 4,444 ✭
    I do sympathise with the onslaught, there is so much to think about, especially at the beginning of this trip. But if you can, do think about talking to a counsellor. The advantage of being able to talk to someone who is NOT your family, a friend or a well intentioned other is huge. The advantage of someone who will talk to you as their client, NOT a patient or a loved one, is equally valuable. It's got nothing to do with not coping. You sound as if you are coping remarkably well. But you are taking on (without your approval!) something complex, time consuming, difficult and tiring. You need some training! And from someone who has experience in assisting others in similar situations. This site is full of fellow travellers with more tips than you can swing a stick at, please use it, but it's not the same as one on one, face to face personal coaching in working out what matters most to you, what you want and how to deal with the rubbish cancer can churn up. 
    Deep breaths, you can do this. 
  • Nat79
    Nat79 Member Posts: 4 ✭
    @TripleTea, you are absolutely not alone. In fact, apart from 2 years age difference (I'm 37), and I have 3 kids, I have the same cancer.  IDC 5cm tumour, grade 3, 11 clear nodes, triple neg. I under went a mastectomy 2 weeks ago. Just wanted the whole sucker gone.  I'm having CT and bone scans this week. I met with my oncologist yesterday and 6 months chemo treatment begins 6/7th Sept.  Still not sure if I need radiation. I have no real advice to give you other than to say I've found great comfort in talking to my Breast Care Nurse and reading the books she's recommended.  Big hugs xxxx
  • Shorelle
    Shorelle Member Posts: 80 ✭
    I too have trouble with this whole mindset. I think it takes time to get a grip. My guess is you are normally a very organised person in control of most things and now whack in the face. Fix this! Well that was me and not being able to fix this has done my head over and over. Also a mum with 3 little girls, 44 years old always lived a healthy life and now a voice telling me its all over. I THINK Im starting to get a grip. I was diagnosed on 29th May and operated on 2 days later and swept into the whole chemo world of uncertainty. Now Ive finished Chemo and weighing up radiotherapy or bilateral mastectomy.  Thinking the big chop of both boobs will give be better chances overall. When tge big black voices inside my head are being nasty I say to them now this is not a helpful thought so go away. I find this is helping me. They are popping up less as timr goes on. Be kind to yourself and dont feel you have to be strong. (Like I did). Ive cried every day since diagnosis and my surgeon and Onc all say you are not coping well and you have taken this worst than most. Well really, Im not sure how a mum of 3 who is needed so very much is supposed to take it. There is no right or wrong way, its your way so you cope with what ever way you can. The support groups are great but at first its all info overload and a whirl wind of what ifs, buts and hows. Take one step at a time hun and get through one treatment at a time. My girls are 5,6 and 8 and I refuse to tell them about whats happened to me as they do not need to have the worry. Not sure how Im going to explain the chop yet. Thinking of you and we are all hear to chat in your darkest moments. Xxx
  • Mrs_H
    Mrs_H Member Posts: 102 ✭
    Being scared is normal. I think it would be strange if you weren't. Just do what you have to do to get through each day. For now I wouldn't plan too far ahead as Chemo can be unpredictable. But then one day you'll reach a turning point when you decide to start planning and your life and thoughts change for the better.  Jen.
  • AliB
    AliB Member Posts: 1 ✭
    Hi Tracy, I'm new here too, diagnosed earlier this month with grade 3 triple negative tumour. I am a 43yo mum of 2. Have since had lumpectomy and sentinel node biopsy and all were clear. I'm confused by the info your GP gave you as I have had only very positive information from all of my doctors. Of course my details may be different to yours but my oncologists' words were to embrace the fact that to all intents and purposes, after the surgery I am cancer free and now have chemo and radiation to look forward to, to make sure there's no more we don't know about and that it doesn't come back. It makes me calmer to think of it that way, that it's all just an insurance policy that I might not even need to use in the future. I have not been advised to consider a mastectomy at this stage after clear lump removal, and that if I did have one that would remove the need for radiation. It seems odd that you would need radiation following a double mastectomy. There is such a barrage of information out there and I think it would be worth finding someone else to discuss your future planning with until you arrive a something that makes you feel more in control. Knowledge is power, as is the support of people going through the same thing. Good luck.
  • melclarity
    melclarity Member Posts: 3,528 ✭
    @AliB It really depends on many things, we all have similar diagnosis but there is such a variance within it, like some have a small lump or tumor, others can have multi focal throughout the breast, so many scenarios. Not unusual to have radiation after mastectomy, again really depends on the individual pathology. Whilst you both have the same Grade 3 you may have a different stage, that also impacts. I've known women who have had radiation after Mastectomy and then also some that haven't. You are right in that you have to have confidence in your Specialists. Theyve come along way with treatment and with Triple Negative. 

    I had DCIS only in 2011 and was treated aggressively with radiation and lumpectomy, clear margins, not a trace and 4yrs of Tamoxifen. So in their eyes my medical team, I did everything possible and yet I had a recurrence in the scar tissue of my lumpectomy 4yrs earlier. Insane?? they cannot explain it. So 2015 another lumpectomy, clear margins, clear nodes, clear bone scan and body scan. Stage 2 Grade 3 aggressive at a yearly checkup. Genetic Testing negative. Told to throw Tamoxifen in the bin, did 5 months of chemo put on Arimidex and 1yr after that they all said to have a mastectomy eventhough I was clear at lumpectomy, because I had a recurrence and they just didnt want to risk it. So I had a single mastectomy/diep flap recon in feb...pathology was clear on that breast. Its super super hard but faith in your Team is so important. I too though look at it now and say I am 2yrs clear from that surgery..do I have faith in the aromatase inhibitor?? not really not after Tamoxifen not working. 

    Hugs Melinda x

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