BRCA1, tumour found - 30 years old

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

Postby jezza » Mon Apr 30, 2018 5:16 pm

Oh yes. After the exchange things should be fine. Long time ago for me but don’t even think about it now, just the new norm with no pain and no bra if I feel like it...lol
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 » Sun Apr 29, 2018 9:28 pm

I didn't have expanders - had implants placed same time as mastectomy - it hurt for about a month but that was the 2 procedures done at once - I also had 4 drains and took a month for them to be removed. This is a huge trauma on your body - it takes time for things to heal but it happens and the pain will go.
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 » Sun Apr 29, 2018 5:19 pm

Do you think the breast become more comfortable once you get the permanent implants in?
It’s so uncomfortable, especially at night.

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Re: BRCA1, tumour found - 30 years old

Postby jezza » Sat Apr 21, 2018 1:15 pm

I found the expander fills to be not too bad.....except when my PS went on holidays and I had another Dr. I was a bit impatient and when he asked if I wanted a little extra to be put in , I thought...great, might cut down the no. of visits I had to have. That was sooo painful. Trouble is, you don't feel it immediately. It was only on the way home that I started to feel it and it got worse and worse. My husband had to go to my GP for painkillers and I actually rang the Dr but he wasn't overly sympathetic. When my regular PS came back she said that he put in too much and if I ever felt a bit uncomfortable I could wait in the waitng room for a half hour or so and she could take some out if it was hurting. Never happened again....very tight for a while and a dull sort of ache but nothing major.

Bad luck about the drains. Luckily I had no problem with mine. They were taken out after a week and then I was allowed home. I think all triple negs get chemo?

Glad you're home. 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 schoolteacher » Sat Apr 21, 2018 10:36 am

Gosh, you are having a rough time :hugs:
I didn’t have expanders so can’t add to what has been said.
I did have chemo. Let us know which chemo drugs you are having. We all had different combinations.
It isn’t easy, but your oncologist can give you drugs to deal with most side effects.
You need to rest during treatment (which won’t start until your surgery heals I imagine)
I was advised to listen to my body. Rest, watch tv etc. research suggests exercise helps you to recover. I tried to walk daily but was breathless. Days 3-7 was when I felt most tired. By the third week I felt more normal. Your immunity is lowered so stay away from large groups and sick people.
I counted down. Each treatment equaled one less left to do. And took it one day at a time.
I hope things improve for you soon. :hugs:
Ps A work colleague had 3xpanders and was in pain due to tightness, they reduced the expanders to ease the discomfort
DX OCT 08, 9mm Her2+ grade 3 tumour and DCIS. Nodes clear, wide local incision, unclear margins so LB mastectomy, chemo Taxotere Carboplatin Herceptin Tram Flap Nov 2011

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Re: BRCA1, tumour found - 30 years old

Postby StephO » Fri Apr 20, 2018 10:14 pm

Hey,

Sorry I’ve been very tired. I was in hospital for a week and relieved to go home!

I have both drain tubes in and hospital in the home visiting daily.
I had a leaking drain tube which they had to come back to fix. Both tubes seem to be blocking and unblocking. They are so annoying! I just want them out.

The expanders do feel tight. I hope it gets better. They will pump them up next week, I heard this hurts :-/

I have results from pathology.
Stage 2, grade 3. Triple negative.
They said I’ll be needing chemo.

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Re: BRCA1, tumour found - 30 years old

Postby Janette » Wed Apr 18, 2018 8:34 pm

My expanders felt like an underwire bra with razor blades but it gets better. It isn't very comfortable but managable. It isn't a walk in the park but worth it for the outcome.

I hope it feels better soon. :hugs:
Janette

Dx LCIS Dec 1997, Dx IDC, DCIS, bilateral LCIS Oct 2005 er+pr+her2-
Bilateral Mastectomies, expanders and silicone implants

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Re: BRCA1, tumour found - 30 years old

Postby jezza » Sun Apr 15, 2018 6:30 pm

Gosh....poor girl....you're getting the lot! Expanders do feel tight, but obviously should not feel as painful as you're feeling. I had mine done 6 months apart so found the healing pretty good. Some tightness is always there I'm afraid, at least for me. I did get used to it though. Have you asked for something to help you sleep? Maybe you can't have anything because of the breathing difficulty? Bad luck about the allergic reaction as well....that does sound nasty.

Well hopefully things will ease up soon and you're even feeling a little better today. I guess your family have been in, hard time for all.

jezza xx
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 pink » Sat Apr 14, 2018 6:37 pm

Hi Steph
I hope you feel better soon. That's terrible what you had to go through. I hope you have more compasionate attentive nurses and doctors for the rest of your stay in hospital.

I hope your breathing improves and they control your pain better so you can get a little bit of sleep.

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Re: BRCA1, tumour found - 30 years old

Postby StephO » Sat Apr 14, 2018 4:41 am

Not doing so well.

im having trouble taking deep breaths due to my chest feeling heavy and tight. Requiring oxygen. I can barely sleep due to frequent waking, pain and trouble breathing.

Ive had an allergic reaction to the dressing around my breasts and it caused a blistered wound.

This has been a horrible and traumatising time :-(

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Re: BRCA1, tumour found - 30 years old

Postby schoolteacher » Fri Apr 13, 2018 7:46 pm

So sorry you were not well looked after. If you were complaing of pain, the nurse should have called a doctor. I found one or two night nurses in public hospitals less conscientious. Most were awesome.
The worst is over now. Onwards and upwards :hugs:
DX OCT 08, 9mm Her2+ grade 3 tumour and DCIS. Nodes clear, wide local incision, unclear margins so LB mastectomy, chemo Taxotere Carboplatin Herceptin Tram Flap Nov 2011

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Re: BRCA1, tumour found - 30 years old

Postby jezza » Fri Apr 13, 2018 10:42 am

I have had the sore throat due to tube during surgery and I have also heard of a few bruises etc after surgery. Your mastectomies and recon operation would have been a very long one and what they say makes sense....a long time for your head to be in one position. At least while you are in hospital you can see how it goes and ask about it again if it doesn't improve in the next couple of days.

The blocked drain sounds very painful. I guess the night nurse didn't know what the problem was and hope when she was told she felt bad. I have been in a similar position after an op (not BC related) ....so much pain and a nurse saying....well the Dr has only prescribed panadol...only to find out later there were complications. There is no excuse for not being sympathetic and trying to find the cause of the problem. I totally agree.

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 StephO » Fri Apr 13, 2018 1:18 am

I also have pain and a lump in my lower head. They think it’s nothing to worry about and think it’s from me laying down in surgery for so long. Anyone else have this? Initially it was numb around it too.

I also have pain in my throat from the endotrachael tube they put down my throat.

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Re: BRCA1, tumour found - 30 years old

Postby StephO » Thu Apr 12, 2018 10:43 pm

The drain tube was blocked which caused my pain. This AM they drained 200 mL and almost instant relief of the pain. I feel so traumatised by last night.

I’m staying longer than they thought because of the blockage so will be here til Monday. May or may not go home with the drain tubes.

I’m putting in a formal complaint regarding the nurse and the care last night. No one should ever have to go through that! They weren’t evening listening to me!

Pain is sooo much better today.

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Re: BRCA1, tumour found - 30 years old

Postby jezza » Thu Apr 12, 2018 5:17 pm

So sorry to hear about your experience and having an unsympathetic nurse doesn't help at all. It makes so much difference to have kind, helpful staff at a time when you're feeling so vunerable and in pain. I hope the pain is under control by now, although I do know how uncomfortable expanders can be. At least your op is over and you can concentrate on getting better (with the cancer gone!).

Are you staying in hospital until the drains come out...or haven't you been told yet. I know some have home nursing while others stay in until the drains are ready to be removed.

Hope things look up for you soon....fingers crossed you get a different nurse tonight!

jezza xx
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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