Lymph nodes

Bluebell5

Hi there, 

I’m a newbie here, great to meet you all. Can anyone shed some light, had a mastectomy 12 days ago and 4 SN lymph nodes taken out. Results came back 3 clear 1 has a 3mm deposit...should I be writing my will? I’m 46 Yrs old. 

Thanks folks and Merry Christmas 🎄 

Afraser

Only as a useful thing for anyone to do, not out of urgency! I had 8 or 9 very enlarged nodes, and biopsy before surgery indicated at least one was malignant. 17 went, quite right too, but the only one affected was the biopsied one. I am seven years post diagnosis and fine. Your oncologist will take that node into consideration for post surgery treatment. Right now recover, relax and enjoy Christmas. Best wishes. 

arpie

Sorry to see you here on Xmas Day, @Bluebell5 - but welcome to the blog!    (And please DON'T use Dr Google!!  Everyone's case is very individual & so much info that pops up on Dr Google is 10-20 years old & totally obsolete to modern doctoring!) . It is also often WRONG!

Try not to overthink it all (difficult tho it is ...) as your onc will be the one to guide you thru the maze.

Take care, enjoy the Xmas break - keeping yourself busy with family & friends ..... and no need to rush into doing that will, I reckon!  xxx

Blossom1961

Hi @Bluebell5 As Afraser says, no need for urgency on the will. I had two node involvement,they removed the lot. That was November 2018 and I am still cancer free. Relax, enjoy Christmas knowing the little sucker is out. Your team will have put in place the next step. Big hugs. Christmas time can be very stressful but add BC into the mix and it goes off the charts. Get some rest if you can and it will be easier to manage the chaos.

kmakm

The peculiar thing about BC @Bluebell5 is that ultimately it's a lottery and they just don't know why. But statistically speaking, 91% will still be truckin' five years after diagnosis. So no, don't write your will just yet.

My mother was diagnosed with aggressive breast cancer at 51, and it was in in lymphatic system. That was 1986. She still here driving me potty at 85!

I think it's impossible to truly relax with a cancer diagnosis, but don't panic if you can help it. Take care, and I hope you have a happy Christmas. K xox 🎅 🎄 🎁 😙

ddon

I haven’t thought about writing my will and I had 8 nodes positive, 3 of them had metastatic growths. I figure that’s what chemo is for. My aunt had 8 positive the same as mine 13 years ago and is perfectly well with no recurrence. Some people have a recurrence with no positive nodes so I think it’s the luck of the draw. 

I was panicked to start with, my tumours (2) were small and I feel ripped off that it was already in my nodes when others have huge tumours that didn’t progress at all to their nodes. But, that’s life.  I have had one chemo treatment, 15 to go, radiation and then tamoxifen and then fingers crossed. 

If we spend our time worrying about dying we aren’t really living 😊

kezmusc

Hi @Bluebell5,

Welcome lovely.  I was 45 at diagnosis with a smallish 19mm breast tumour, a 25mm one in one node. There ended up being 5 positive out of the 24 removed.  Surgery, chemo, rads, hormone therapy and still here 3 years later. 
You get a huge mortality shock that comes standard with this thing. Your brain starts planning the worst case scenario it can think of for goodness knows what reason but it happens to most of us.  

All the best and Merry xmas lovely.
xoxoxoxo

Cazamcm

Hi @ Bluebell 5 

Hi there . Wishing you all the very best. Perfectly understandable that you are worried . While I will never be complacent I am now 22 years post  breast cancer with no recurrence . My initial diagnosis at age 39 was of multi focal lobular carcinoma with 14 lymph nodes positive . Every time the Drs said I was high risk of recurrence  it fired me up to beat the cancer and prove them wrong.    

My treatment back in 1997 was mastectomy, chemotherapy, radiation, oophorectomy, tamoxifen then Femara.

Try and stay positive, don't be afraid to ask questions and best wishes. 


xoxoxo

Glynnis

I had a total of 24 lymph nodes removed, 23 had cancer in them even after chemo, that was in 2015  it's now 2019 and I have mets, under control, i try being as positive as I can be all the time, yes I have odd times where I go down, but not for long, my 1st goal is to reach my 70th birthday in 2029,then I'll go from there for 2nd goal one goal at a time 😀😀

Caz1

Hi @kezmusc, so was that all off your nodes out? Did you have any side effects ie lymphadenopathy?
Planning my surgery now..sorry if I’ve asked you this but I’ve got seriously bad chemo brain!
Cazxx

Afraser

You may have about 100 lymph nodes around the arm area, which is why there is no certainty about lymphoedema - your body may cope with losing 25 or may not with losing a smaller number. Bit of another lottery. It seems (my observation only) that losing 5 or less is unlikely to have much effect but more gets into the uncertain area. On the other hand, leaving iffy ones in place is not such a good idea! 

kezmusc

Hi @Caz1
I was told at the time that there can be as little as 10 or up to 50 in the axillary area.  Everyone is different that's why they can't be too specific until they are out and sent to pathology.  They took a fair size chunk of flesh out and there ended up being 24 nodes in there 5 with cancer that were breaking out into the surrounding area.  
Personally I have had no problems with it at all. Still a bit numb right along the scar line but other than that, fully functional and strong as it ever was.
xoxoxo

arpie

How are you going @Bluebell5 ?  I hope that you are recovering well and comfortable with where you are ‘at’.  Feel free to put up any questions that you may have ...,  and we’ll do our best to help you. Xx 

Wow @Cazamcm - well done with your own recovery from your BC diagnosis and treatments .... that is AWESOME!  Your story will be a positive beacon for us all to follow!  Feel free to give us a more in depth version, in your own time xx 

Take care, ladies xxx

Bluebell5

Hey, sorry for delay still here but now at funeral in NZ. Appointment was crap, i did mention at the beginning of the consultation that I wasn’t interested in chemo at this stage, with only 3mm in lymph node....however, she was convinced it is my only way....if I heard her say chemotherapy again was going to charge at her....got me so angry. People have the right to chose, the right to refuse and the damn right to exhaust every other options before getting blasted with chemo and radiation no? Anyway, she commented on expander saying hmmmm that’s a great job...really good....well huny I’m still in agony after 5 weeks no other advice. I’ve had more honest medical advice on here than I did with her. Maybe it’s me...dunno. Thanks for support peeps 😣 @Cazamcm you are brave as my friend 💪

kmakm

@Bluebell5 It's your body, your life and so you get to decide. No one else. As long as you fully understand the science behind why you're being advised that chemotherapy is your only medical option at this stage, because you wouldn't want to be in the position of your cancer metastasizing because of a decision made without full comprehension.

I feel very strongly about treatment decisions being made, in full knowledge, by the person with the cancer, being fully respected. It may not be what I'd decide, but your right to make that choice is the same as mine.

So, with all the facts, the decision you make is the right one for you. It's your life. K xox

Bluebell5

Thanks for your support Kmac 🙏 
I have now been studying the C monster for nearly 4 years, what annoys me is, it’s not my only option, spoke to a surgeon recently about immunotherapy this is a lot more agreeable for me. I understand it is still in trial stages here in Australia but there are trials on the go. Of course not all surgeons are aware of all the trials going on, one surgeon in Peter Macallum didn’t even know about a machine they had just received in their hospital. 

Wish I hadn’t went to this other local surgeon, scaremongering...but putting it like....“Im trying to save your life”....
It’s frustrating that’s all..minefield. 

✌️