Forum Discussion
Oh well, I still dont know
After my inoperable tumors went thru 5 months of chemo, I finally had a mastectomy just before xmas on 20th December. The breast nurse had assured me that all would be revealed after the mastectomy, ie cell grading, ongoing radiation, what drug regime for the next 5 to 10 years, blah, blah, blah...
The operation was not too bad, the worst part being carrying that dam bag of bodily fluids with you wherever you went. One of the valves (and there must have been 20 weak links in that bag) leaked everywhere. I had to find the problem and then wash everything and put it all back into a fresh bag. We are deep into xmas and boxing day so there is no one to call for such an incident.
Two drains and that funny little pump that people thought was my phone calling me. "Oh, you better get that", no, it's just my pump doing its thing.
I kept the bandage on after the nurse came to take the drains out. I wasn't ready to look at myself just yet. But then the bandage got wet and fell off and there were all these little pieces of sticky tape with what I knew was going to be my 'scar' running in a line under the tape.
After another day or 2 they started to lift off so I called the breast nurse and said I was ready for the big reveal - a line that starts to the right of my sternum, and goes across the middle and gently curves up under my arm. I was surprised at how unnoticeable it looked, like a breast with no nipple, the other breast being a AA cup, lol, helps with the illusion.
I'm thinking that this is too easy, my reconstruction surgeon is gonna love this look, started putting on Stratamed gel to reduce scarring and had virtually full movement in my shoulder by the time I went to see the surgeon for my post operative visit yesterday.
First I go into a nurse's office (this has never happened before) and she examines me and is more thrilled than I am!
I am then taken across the hall to my surgeon. She tells me that she took only one node and that it had cancer in it. I'd been told that the blue dye that I had injected into me was going to identify the four nodes closest to the tumours and they were the ones that were to be taken. When I woke up, the first thing I was told was that 3 nodes had been taken. What about the 4th node? Couldn't find it? Who knows.
So back to my armpit for the rest on January 31. She said the tumours were 'large' both being 4.2 cms. There will be drains again of course and will basically be the same operation only deeper and more after pain. She said the cut would not go across the centre but towards my armpit. I reckon they'll tell you anything to get you treated, which is probably a good thing.
Luckily I had my sister with me to listen and ask away. My head went numb and I could hear nothing.
My children thought that I'd had my mastectomy. They are all confused and worried while I sit back and feel it's my destiny.
Whatever will be will be.
The operation was not too bad, the worst part being carrying that dam bag of bodily fluids with you wherever you went. One of the valves (and there must have been 20 weak links in that bag) leaked everywhere. I had to find the problem and then wash everything and put it all back into a fresh bag. We are deep into xmas and boxing day so there is no one to call for such an incident.
Two drains and that funny little pump that people thought was my phone calling me. "Oh, you better get that", no, it's just my pump doing its thing.
I kept the bandage on after the nurse came to take the drains out. I wasn't ready to look at myself just yet. But then the bandage got wet and fell off and there were all these little pieces of sticky tape with what I knew was going to be my 'scar' running in a line under the tape.
After another day or 2 they started to lift off so I called the breast nurse and said I was ready for the big reveal - a line that starts to the right of my sternum, and goes across the middle and gently curves up under my arm. I was surprised at how unnoticeable it looked, like a breast with no nipple, the other breast being a AA cup, lol, helps with the illusion.
I'm thinking that this is too easy, my reconstruction surgeon is gonna love this look, started putting on Stratamed gel to reduce scarring and had virtually full movement in my shoulder by the time I went to see the surgeon for my post operative visit yesterday.
First I go into a nurse's office (this has never happened before) and she examines me and is more thrilled than I am!
I am then taken across the hall to my surgeon. She tells me that she took only one node and that it had cancer in it. I'd been told that the blue dye that I had injected into me was going to identify the four nodes closest to the tumours and they were the ones that were to be taken. When I woke up, the first thing I was told was that 3 nodes had been taken. What about the 4th node? Couldn't find it? Who knows.
So back to my armpit for the rest on January 31. She said the tumours were 'large' both being 4.2 cms. There will be drains again of course and will basically be the same operation only deeper and more after pain. She said the cut would not go across the centre but towards my armpit. I reckon they'll tell you anything to get you treated, which is probably a good thing.
Luckily I had my sister with me to listen and ask away. My head went numb and I could hear nothing.
My children thought that I'd had my mastectomy. They are all confused and worried while I sit back and feel it's my destiny.
Whatever will be will be.
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25 Replies
- I also felt that the Doc’s only tell you so much to get you in the door. I remember being told I could go home from hospital when I got bored with the understanding that I would have drains in if I chose to go home before they were ready to be removed. A few days in hospital and the surgeon tells me that she never sends anyone home with 2 drains in. Well that’s nice to know. Lucky I had talked myself into doing what was right for me, not necessarily what I wanted (going home earlier than recommended). I found radiation was the same deal, “let’s worry about that if it happens”. Yep, I’ll send you for a consult to cover myself.
I had surgery (double mastectomy with r/s node clearance) on 30th November. If you can, get a Physio to see you and show you how to do the stretches correctly. I’ve ended up with some issues on the clearance side. Some continual swelling, lymph fluid build up and mobility issues. Some was cording, some beginnings of lymphedema, and some just over doing it. I’m trying to work through it but I’m not where I thought I would be at 6 weeks post op. Everyone is different though.
Good luck with the next surgery. Jen xx. - It's hard to know sometimes. I knew I had one malignant node before surgery and would have nodes removed. At least 8 or 9 were similarly enlarged and Suss looking (technical term!). 17 went in all, but the only malignant one was the one we knew about beforehand, the rest were just mightily irritated. Can't fault the action as it seemed sensible. I did get lymphoedema but it's perfectly manageable. Your odds of not getting it are better than your odds of getting it!
- @primek
I now know that both my tumors are of the same pathology - grade 2, or/pr positive, HER2 Negative, one was 4.9 cms and the other 4.2 cms. I asked what if they didn't find any nodes without cancer and was told 'we'd cross that bridge when we came to it'.
I feel so let down. I can't understand why only one node would be taken to start with, I was told all along how aggressive it was... I dunno, but if I was the surgeon I would have taken plenty first time around to ensure not having to go back again, just like your niece.
Thanks for your interest. I find it a very lonely time, unwilling to worry my family too much (3 of my children have a mental illness) and feel that friends only want to hear good news.
Cheers - @kezmusc
I am using a clear film type of cream called Stratamed but will check out Bio-Oil. I'm a natural exerciser, always stretching and aching to ride my horse again. Good to hear you've had no problem with lymphodema, one of my concerns when they take the rest of my nodes. - Dear @PatsyN.
The drains are the worst aren't they? I had level 2 lymph node clearance as the lump in them was larger than the breast one so they took everything they could find I guess. 5/24 positive and the shit was starting to break through their little capsules. Anyhoo, I found it was pretty quick recovery as long as you do the exercises they give you religiously plus more if you can. I am 15 months on. Have full use and 99 %strength back in that arm. The scar is next to invisible (thank you Bio-Oil) have had no problem with lymphodema since the beginning. The feeling took a little time to come back but it did. Wishing you a speedy recovery and all the best.
XOXOXOX - Dear @PatsyN and network members who have responded, Best wishes to you all; and as it's been said many times - what a great network for support and getting information and ideas.
- No, the nodes don't regenerate. Typically our bodies form alternative pathways to shift lymph fluid around--though sometimes that process fails and that's when you can end up with lymphoedema.
- Does the sentinel node grow back or does another take over ?
- It's nice that they are thorough. Lovely. Absolutely bloody joyous.
The gristly little bags of body fluids are the worst. - Oh so annoying on the nodes but do know that many many women on here have gone back for exactly what you have to go for. We all wait with baited breath if enough sentinal nodes were negative to not have more. But alas for many it's not the case. My niece at 32 had 20 nodes removed and 10 were positive. (Yet her original lump was less than 2mm....yes less than 2mm) 15 years on she remains cancer free.
Do you know what type of bc you have yet?
Oh it's a hard journey and I so hope things are done with for you soon. Kath x
