BRCA1, tumour found - 30 years old

For those with a High Risk of Breast Cancer -BRCA1 and BRCA2 Genes, Family History, LCIS
StephO
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Re: BRCA1, tumour found - 30 years old

Postby StephO » Tue Mar 20, 2018 11:15 am

Hey ladies.

I had a radioacetone injection yesterday and have just come out of sentinel node biopsy.

My thumb and index are numb? Anyone had this?

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Re: BRCA1, tumour found - 30 years old

Postby StephO » Fri Mar 16, 2018 11:50 pm

Hi Ruth,

Just biopsy.

I haven’t had an appointment with anyone yet to discuss reconstruction... hopefully that will be soon

ruth1
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Re: BRCA1, tumour found - 30 years old

Postby ruth1 » Fri Mar 16, 2018 9:11 am

Steph have you discussed a reconstruction plan with anyone? What is being done on Tuesday - is it just the biopsy or are you having a lumpectomy too?
Dx IDC 2cm grade 3 ER/PR pos. DCIS grade 3, fam hist metastatic BC. Bi lat mastectomy, FEC x 4, surgical revision pending. AI x 5 yrs Femara

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Re: BRCA1, tumour found - 30 years old

Postby StephO » Thu Mar 15, 2018 9:12 pm

Hey,

So they rang me today.
Monday I go to have that dye scan thing and then Tuesday 7am I’ll be having sentinel node biopsy.
They initially told me 2-3 weeks, so I’m surprised how quick... one week from diagnosis today and will be 12 days from diagnosis once I go in on tuesday.

A little bit nervous. Anything to tell me regarding what will happen?
Thanks xx

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Re: BRCA1, tumour found - 30 years old

Postby StephO » Wed Mar 14, 2018 10:57 pm

Hi Ruth and Jess.

Yes I have ditched him many times because he wouldnt take me on a date but he kept boomerang back. I just find it very strange that someone could be so heartless considering the situation but people show their true colour sometimes in hardship.

I have spoken to a few people who have had mastectomies including my mum and my cousin who had prophylactic double mastectomy as she has the BRCA1 gene (she also had her ovaries and Fallopian tubes out). She’s 40. Here look great but she decided to keep her nipples.

I haven’t heard anything for when surgery is which makes me nervous. A week tomorrow after being diagnosed... I thought maybe I would have got a letter or something. I hope they haven’t forgotten about me.

I live at home with my mum and Dad and my son. My mum is an enormous help. But I still need to get up and take my son to school and go to work.

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Re: BRCA1, tumour found - 30 years old

Postby jezza » Wed Mar 14, 2018 9:27 pm

Hi Steph

Agree with Ruth....don't have anything to do with that guy. You don't need someone like that in your life right now. People on this forum have met their partners, before BC,during treatment and some time after after diagnosis. You just never know, but I totally understand how devastating it is to be told you are going to have to have mastectomies.

I had implants and expanders put in at the time of my mastectomies. I have saline implants and a little of the fill was put in straight away. Cosmetically they look pretty good and I was pleased with the outcome. Everyone is different and I don't think it is always possible to start recon immediately. On my propylactic side you can't see the scar at all.(underneath) On the side that had the tumour there is a very faint scar from nipple to near middle of chest. Plastic surgeons are very good at doing this.

Is it just you and your little boy at home? So hard if you are not sleeping. Do you know when your op is yet?

Hugs

jezza
Dx Jan. 1992 9mm Grade 3 IDC node neg. LB mast. Prophylactic RB mast. 6 months later. No chemo. No rads. Saline implants. 22 years NED. (No Evidence of Disease)

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Re: BRCA1, tumour found - 30 years old

Postby ruth1 » Wed Mar 14, 2018 8:51 am

Steph - please ditch that man - he is not for you going through this. That old thing of he's not really into you is very true - any guy that wants to be with you will be - messing people about and not going out etc is the work of someone just messing about and unfortunately these people exist and do a lot of emotional damage.

Yes, we've all been throught the thing of people and friends being different after diagnosis - many of us have had friends just drop off too. This is the time for you to gather as much strength as you can and focus all of it on yourself and that little boy who needs all of you especially now because kids sense that things are very wrong and think its because of them so they really need all the attention they can get. Tr and not get ahead of yourself and live in the present day and love what you have. The future will come but worrying about it now and what might or might not be just adds to your stress.

The night horrors are awful to cope with and it might be worth getting some medical help - I was diagnosed 6 weeks before my surgery and I too used to think of the tumour progressing everyday. No solution except keeping very busy and trying to relax yourself somehow.

The mastectomy thing - you need to see a surgeon and discuss all of this asap - no - diep is a whole procedure and you wont need implants as well.
Dx IDC 2cm grade 3 ER/PR pos. DCIS grade 3, fam hist metastatic BC. Bi lat mastectomy, FEC x 4, surgical revision pending. AI x 5 yrs Femara

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Re: BRCA1, tumour found - 30 years old

Postby StephO » Tue Mar 13, 2018 11:38 pm

Another late night post. I’m hating nights. I’m a night owl as it’s my “me” time. But I just can’t stop thinking about it no matter what I do and I get quite upset. I’m also having trouble sleeping because of my thoughts, the pain in my breast and being uncomfortable (I sleep on my stomach). My other breast is now aching and then I worry I have breast cancer now I’m that breast.
I’m worried about the tumour growing and the cells dividing constantly and whilst I wait for surgery, if it hasn’t spread yet, it will be closer and closer to spreading.

It does make me sad thinking about my future. My son, I love him dearly, he is 7 years old this year in June. I didn’t get to have another child or get married yet. It was already so hard to meet someone.

Thinking about mastectomy options is so hard. I was wondering if you can get a mixture of implant and DIEP? It’s so hard to make such a permanent choice.

My sister bought me flowers and a friend surprised me with a gift in the mail from peter Alexander. I get so nervous going out if I see people that haven’t seen me since diagnosis. The way people look at me now is different. It’s like a saddened look.
I know it’s sad, I’m 30. But it’s sad at any age and it’s very threatening to our mortality. It’s just horrible.
It almost doesn’t feel real.

My tumour is 2cm. Just wondering what size you guys tumour was and what symptoms you had if any and how you found it?

I was pushed in the breast by an aggressive resident at work and it hurt just over a month ago. Then a guy I liked and I were fooling around and he was drunk and grabbed my boob and it hurt. Bras had been uncomfortable for the last 6 months (normally I can sleep in a bra), pain like a dull ache with moment of a sharp pain constant throughout the day) which was only onset after the guy grabbed my breast.

Unfortunately that guy and I had been speaking for 9 months and met a few times but had spoken on and off due to his moodiness and unwillingness to take me out on a proper date. The last time he had messaged me was when I found the lump and was quite upset and told him I found a lump and had pain since he squeezed it to which the idiot replied “oh so it’s my fault you have Cancer” which at that time I didn’t know was cancer and also, never would I ever blame anybody. He probably did me a favour by alerting me to it. However, he blocked my number after that conversation for no reason even though the conversation ended fine. I had a friend message him to tell him my diagnosis and he never sent a reply or unblocked me to message me. Some people are just such arseholes.

Sorry ladies... rant over

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Re: BRCA1, tumour found - 30 years old

Postby JudyB » Tue Mar 13, 2018 9:54 pm

Oh Steph, you poor thing, this is so hard for anyone but for a younger person it has so many extra concerns. There are a few people on here who met their partners after they had a mastectomy, some even when they were undergoing chemo. In some ways at least you know the guy won't run when the going gets tough! i do see how it would be difficult to date and know when it would be appropriate to tell someone what you have been through. Try not to worry about those things as it usually is nowhere near as bad as you might imagine. Concentrate on doing what needs to be done to get better, talk to your surgeon about what your choices are. As I said earlier I was terrified of what it would look like but it really wasn't as bad as I expected.

Don't ever feel you can't say what you are thinking here, that's what we are here for and we've all been through similar and understand all the feelings of despair.

Judy
DX Sep 09, LB mast with axillary diss. Grd 2 Ductal Carc. 50mm diam. Margins clear. 1/13 nodes. OR+ PR+, HER2- . FEC x 3, Taxotere x 3, RADS x 30, Tamoxifen, DIEP reconstruction April 2011, Femara 2013, Oophorectomy 2013.

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Re: BRCA1, tumour found - 30 years old

Postby jezza » Mon Mar 12, 2018 8:03 pm

Please don't worry about annoying us with your thoughts. That's what this forum is all about. You can say anything here. We have all had had the same hard time coping. I know what you mean about it being like a bad dream. I kept thinking the surgeon was going to say...we've made a mistake...got results mixed up...cos I felt so well. Hard to explain to anyone who hasn't been through it but I found it really hard to accept and at first I didn't cope
well.

I'm on my way out now but I will check in again tomorrow. There has been so much progress with identifying the BRCA1 gene and prevention of further BC.

jezza
Dx Jan. 1992 9mm Grade 3 IDC node neg. LB mast. Prophylactic RB mast. 6 months later. No chemo. No rads. Saline implants. 22 years NED. (No Evidence of Disease)

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Re: BRCA1, tumour found - 30 years old

Postby ruth1 » Mon Mar 12, 2018 5:37 pm

look it up online - its a surgical reconstruction process whereby your own fat and tissue is taken from usually the stomach area of your body or thighs if needed and then used to reconstruct breasts. The results are very good but it is long surgery - you are so young I think you would be a great candidate for this procedure but you need to speak with a plastic surgeon and make a plan to see if you can do this.
Dx IDC 2cm grade 3 ER/PR pos. DCIS grade 3, fam hist metastatic BC. Bi lat mastectomy, FEC x 4, surgical revision pending. AI x 5 yrs Femara

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Re: BRCA1, tumour found - 30 years old

Postby StephO » Mon Mar 12, 2018 4:25 pm

Yes I agree, the waiting for stuff to happen is hard. You just want to get on with it NOW.
What is DIEP?

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Re: BRCA1, tumour found - 30 years old

Postby Janette » Sun Mar 11, 2018 3:03 pm

Hi Steph
You really don't want to keep your nipples with the risk factor in doing so. I have reconstructed nipples and they're fine.

Yes it is very scary at this time in the whole journey, it is what it is, try to take your mind off it if you can. :hugs:
Janette


ruth1
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Re: BRCA1, tumour found - 30 years old

Postby ruth1 » Sun Mar 11, 2018 8:12 am

Steph its awful to think these things late at night and I send you the biggest hug I can - this is hard stuff The waiting for surgery and to know whats coming is torture. So the nipples have to go -well there are options for that as well so if you do the Diep you wont come out looking unsightly - Ive seen the result of one diep and it was amazing - seen others elsewhere pics only and all look great. Finding a partner might be on hold for a year while you deal with this but it certainly wont stop you finding someone down the track - you wont look terrible at all. Thinking about death is something we all go through - Ive planned funerals and still here!! You've been hit with a life threatening illness so your thinking is part of dealing with it. Try and manage the days by one day at a time and keep busy - don't get ahead of yourself with stuff you cant change - I count down the hours so plan the next few hours - do what you plan then repeat - even if its cleaning your house or taking your child out somewhere- anything to get through another day.
Dx IDC 2cm grade 3 ER/PR pos. DCIS grade 3, fam hist metastatic BC. Bi lat mastectomy, FEC x 4, surgical revision pending. AI x 5 yrs Femara

StephO
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Re: BRCA1, tumour found - 30 years old

Postby StephO » Sun Mar 11, 2018 2:43 am

Hi Ruth.

Late night post, I can’t sleep and am crying.

I can’t keeo my nipples due to BRCA1. If I keep them I still have 20% chance of getting nipple cancer. If I could keep them I would be less upset if the scarring but I feel now I will look like a lawn mower ran over my chest.

I also worry bout finding a partner in the future. I’ve been single from my sons dad for 5 years and have not been able to find anyone for a relationship. This will only make it harder and then the clock will tick for me to have another child.

I’m worried about the cancer spreading to the lymph node. I’m not afraid of dying but I’m not ready to die. I know that’s negative thinking but yes, it is a thing that can happen.

Just wanted to share my thoughts.
I must be annoying you all with my thoughts right now.
I feel some days ok and then other times I’m not coping well. I feel lonely and wish I had someone to cuddle me and hold my hand and tell me everything is going to be ok. I feel like this is just a bad dream and I hope I wake up soon even though I know that’s not true.
I know I’m usually outgoing and bubbly but at the moment I’m quiet and stuck in my own thoughts a lot of the time.


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