Forum Discussion
PatsyN
8 years agoMember
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.
25 Replies
- PatsyNMember@primek
The blue dye that I had injected into me was supposed to identify the four closest nodes but it only went to one due to scar tissue in my breast. When I was a newborn baby I had a cyst on my breast and they scraped out a lot of breast tissue which caused a lot of scarring. These days a baby's cyst would be merely drained. That stupid right tit was never good for anything - I breastfed my babies from one breast (the last one who I had at the age of 44, I fed for 3 years!). - primekMemberYes @PatsyN it's a great link...I'd not seen it before either and I did do lots of reading trying to figure out why I had no positive nodes and studying node positions etc. Pot luck I concluded.
- PatsyNMember@primek
Thanks so much for that link Kath, it was extremely informative and I wish I'd watched it before my mastectomy.
I've been one step behind from the very beginning. - PatsyNMember@Sister - We never diss doctors, they are our Gods who will save us.
My problem is asking the right questions to the wrong doctor.
I see the breast surgeon and come up with lots of questions afterward but then the next doctor I see will be the oncologist so I ask him all the surgeon questions that have been on my mind. He always says that's not really his area and then I have questions that I dwell on from the onco appointment, which I'll then ask the breast surgeon who's the next one I see...
I've dealt with several breast nurses who've all given me different answers to that of the breast surgeon (after the event). My questions are mainly of the Why variety rather than What.
The cycle goes on and I must take part of the blame for maybe not hearing or asking some very crucial questions. I was on chemo within weeks of diagnosis and feel my usual capabilities of reasoning have flown out the window. I still suffer badly from chemo fog and my walking is wobbly - I've forgotten how to run. The doctors seem surprised that I still can't walk a straight line, but no one seems at all concerned, any side effects are to be expected (and time will tell precisely what you are left with).
I've got a bit of a case of the 'why me's' today too!
(It's been stinking hot for days)
Cheers and chin up, I'm feeling better already. xo - SisterMember@PatsyN. I hope that it didn't sound as if I was dissing the doctor... My surgeon was always straight with me that more could be needed as we wouldn't know for sure until the pathology came back but there were no indications from the ultrasounds or mammograms that it would be the case. He knew when he did the partial that it was a lot bigger than indicated and he took as much as he could at the time. He also knew that I had been waiting so long for the results to come through (probably due to the Christmas break) when he rang me and would have brought me in for an appointment if I hadn't already had one booked for the next day. I've just a case of the "why me" s.
- PatsyNMember@Sister
I'm surprised they told you this over the phone! I was told face to face with a lot of drawings that looked like a pre-schooler had done (not dissing my surgeon in her specialty of surgery, in case she ever reads this, but she certainly can't draw). What a disappointment for you too. I'm expecting more pain, but if you've gotta sit around with a bag of drains you may as well be doing it with painkillers. I wish that more explaining was done beforehand regarding the likelihood of another operation. - SisterMemberHi @PatsyN. I'm in a similar position having had the partial with sentinel nodes done just before Christmas. I was absolutely thrilled with the result (barely noticeable) and was starting to get proper movement, strength and some feeling back. Got the phone call last week to say the tumour was bigger than thought and cancer in 3 of the 5 nodes they took. I got home from hospital again, yesterday. While I'm very sore and feeling a bit let down, I'm also relieved that surgery is done and that the surgeon has done his best to get me ready for further treatment.
I've found this network to be an excellent site to express fears and explore what the reality is so that I don't overload my family. And while I don't want anyone to be in this group (including me), it's also comforting to know that there's a community of people going through a similar experience and surviving it.
Hang on in there (just don't stretch your arm too much when hanging 'cos it'll really hurt)! - PatsyNMember@Mrs_H
I've got full movement in my arm. I had to stretch a bit more each day to reach my glasses in the top kitchen cupboard. I did plenty of shoulder rolls as well and a few yoga poses that concentrated on my arms and shoulders but I'm pretty sure it will take longer next time around. I had no swelling and felt really good about the whole procedure and the appearance. That's why it's such a blow to have to go back. I thought it can't be this easy... And as you know, it's not. Good luck to you too. - MollygirlMemberArrgh, @PatsyN, so bloody sorry you have to go back for more surgery. I really hope you will fly through it....
Those damn nodes are tricky little things. Fingers crossed no more are affected tho for you.
keep up up with the stretches and exercises in the meantime. Sounds like you're all over that. I'm 7 weeks post bilateral so no recon and am surprised and also thrilled at how quickly I got going. I'm using cica care (silicone gel like pads) on my incision lines. It's bloody expensive and sticks me to my sheets at night (LOL) but I used it after my melanoma surgery a couple of years ago so know it's good. Massive hugs, Bec xx
PS I call my scars - survival badges!!! - primekMemberThey prefer not to take additional nodes if not needed due to risks. I had 3 taken, in the breast and 1 node was actually 2 when looked at. I have same pathology. All very treatable. When they do the additional clearance they take a clump...Apparently the nodes are all caught up in fat under the arm so it's very hard for them to say how many will be taken. If after clearance it's under 3 you might not require radio. But they might do it regardless to be sure.
Hang in there....know they were doing the best for you to reduce risks of lymphodema.
This link really explains it and the pictures are very helpful I think.
http://beasurvivoravera.com/axillary-lymph-node-dissection/
Kath x