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 » Thu Apr 12, 2018 2:56 pm

Hey ladies.

In hospital atm recovering from my double mastectomy and expanders. Have been in quite a bit of pain and had the worst 24 hours in regard to pain, the night nurse wasn’t nice and the doctors weren’t listening to me.

One of my drain tubes was blocked causing a large amount of pain and discomfort. 200ml was aspirated our and I almost immediately felt relief.

Hopefully the worst is over... because it’s been a nightmare

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Re: BRCA1, tumour found - 30 years old

Postby jezza » Sun Apr 08, 2018 9:42 am

Steph

I would say that as you want to be around a D size you would be having expanders in to stretch the skin. I have only heard of much smaller getting implants straght away and very rarely. (just my opinion of course). I woke up with expanders and my first "fill" already in so not a completely flat chest.

Don't talk to me about aches and pains! I had everything. I had a pain in my Knee that I rang my surgeon about, then I had a sore throat that I wanted tests for. Things that I would normally dismiss I was terrified about. It's such a stressful time. Are you having a bone scan? This was routine I think when I was diagnosed and certainly put a lot of my worries at rest. Certainly mention it to your Drs ...don't just dwell on it.

We all know what you're going through. It's an awful time but it will get better. xx

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 Janette » Sun Apr 08, 2018 9:00 am

Steph, I went through very similar emotions, as we all do. I thought I could feel it growing in my lymph nodes but it was fine. It is a scarey time.

Just concentrate on the risk removal, statistics with bc are pretty good. Research is going ahead in leaps and bounds.

No one could have convinced me at the time that losing both breasts would have so little impact on me, but I joke about it.

Surgery will be over soon and the results will follow soon after. You will be looking back on this as we all do now. :hugs:
Janette


StephO
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Re: BRCA1, tumour found - 30 years old

Postby StephO » Sun Apr 08, 2018 3:44 am

Thanks for the approval for the reconstruction photos Janette. I had no idea what to expect so seeing some before after photos have been great. However, the start of it does look scary aesthetically, the end results look great. Will never be our original breasts though. Seeing those pics made me sad for all the women who have lost their breasts due to BC or preventative. I feel teary now.
I’m happy to share mine when it’s all over.

Having a bad night tonight, unable to sleep. Thinking about dying again.
I’ve had pain below my left breast in my rib area when I press on it. Lower rib area and same side as my cancerous breast. It’s been there for about 4-5 days. It’s making me worried that even though it didn’t spread to the lymph nodes, that it has spread to my ribs.
Do I mention this to the doctors on Tuesday before my surgery?

I don’t want to die so young.

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Re: BRCA1, tumour found - 30 years old

Postby Janette » Sat Apr 07, 2018 10:27 pm

I always think that when I wake up, it's done and you're on the road to recovery. I just concentrated on the growth of new perky boobs. I had 6 drains and no big deal, I showed my chest to my close friends. The medical team will look after your pain.

I hope everything goes very well. :hugs:
Janette




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Re: BRCA1, tumour found - 30 years old

Postby schoolteacher » Sat Apr 07, 2018 4:22 pm

Write down your questions Steph and ask your medical team. You have a right to know. It’s your body. Someone here will remember what it felt like post surgery. I didn’t have expanders so can’t help sorry.
The mastectomy is painless You May have drains in for a few days. You’ll be fine.

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Re: BRCA1, tumour found - 30 years old

Postby StephO » Sat Apr 07, 2018 1:48 pm

I’m a bit nervous and scared as I don’t exactly know what to expect until I wake up in regards to pain or what I’ll look like, or if they have put expanders in or implants.
I always get nervous/scared when they put me to sleep

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Re: BRCA1, tumour found - 30 years old

Postby pink » Thu Apr 05, 2018 11:43 pm

Good luck for next Tuesday Steph! I will be sending you good vibes.

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Re: BRCA1, tumour found - 30 years old

Postby ruth1 » Thu Apr 05, 2018 10:32 pm

great news Steph - you must feel soooo relieved. :v_happy:
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 schoolteacher » Thu Apr 05, 2018 9:36 pm

Yay for clear sentinel nodes and a decision made. The mastectomy is a breeze compared to node removal as far as pain and discomfort. Good luck next Tuesday.

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Re: BRCA1, tumour found - 30 years old

Postby StephO » Thu Apr 05, 2018 8:23 pm

I agree with you Jezza, I felt a massive weight off my shoulders.

I’m having surgery for double mastectomy on 10th if April (next Tuesday)

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Re: BRCA1, tumour found - 30 years old

Postby jezza » Thu Mar 29, 2018 4:17 pm

That is so good about clear nodes. When I was told this was when I felt able to cope. I had a complete axillary node clearance at the time of my first mastectomy. Back when I was diagnosed they didn't do SNB so it's great to know the result before you have surgery. People on here have had good outcomes with some positive nodes though.

It's also good to have decent size implants because if you gain weight the implants don't grow with you! Mine looked quite big when they were first done (my natural ones were small) but I have put on a few kilos since then.

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)

StephO
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Re: BRCA1, tumour found - 30 years old

Postby StephO » Thu Mar 29, 2018 3:09 pm

I found out the result today of SNB....
They removed 3 lymph nodes and cancer was not found in any of them!!!!!! Such a happy and lucky result!!

Judy, I’m also a smoker so it is also not recommended until I give up (which I had been wanting to do prior to all of this anyway). Need to have given up smoking for at least a month, I was told.

Within a couple of weeks or so I’ll be having the double mastectomy with reconstruction.
I’m okay with the implant option.

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Re: BRCA1, tumour found - 30 years old

Postby JudyB » Thu Mar 29, 2018 11:53 am

Steph I don't mean to throw a cat among the pigeons but I would strongly suggest either getting a second opinion about the DIEP because I know of a lady who is now 34 weeks pregnant after having a DIEP. After reading your post I questioned her and asked her if she was ever told not to get pregnant or strongly advised against it and both her and another girl said that when making their decision to have the DIEP their main concern was whether or not they would be able to have children afterwards and both were assured that it would make no difference. These are women from a facebook group for DIEPers and they were probably americans and I don't know if your/their weight or other circumstances would change the situation but it is certainly worthwhile looking into this further and not just accepting that anyone who has a DIEP can't have children later. Make sure that the person that told you this actually does do DIEPs and is passing on correct information.
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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jezza
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Re: BRCA1, tumour found - 30 years old

Postby jezza » Wed Mar 28, 2018 4:57 pm

Well I guess that answers a few questions for you.At least if you don't have a choice you don't have to mull over the pros and cons. That makes sense about the option to have more children... I hadn't thought of that. What was the result of your SNB?

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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