Thanks @Galaq. I’m trying so hard to wait patiently for my results. Ive done 4 weeks of waiting, 2 to go. Its torture. I can’t sleep and all i think about is what my results might say. I think if i do have cancer in my nodes i will have the axillary clearance and hope that i dont get lymphoedema. Goodluck with all the medication and here’s to no recurrence! X
The waiting is the worst and causes so much anxiety for us all. I wish you well for your surgery, and results.
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Hi Bluesatsuma,
I had surgery in June 2019.
All margins were clear and no sign of cancer in my one lymph node removal.
Surgery followed by radiotherapy and letrozole tablets.
However, late 2022, when all was looking good, the cancer had actually spread to my spine and spleen. The oncologist said that even though all looked clear after surgery very tiny cancer cells that weren’t detected, grew. For some reason I was never offered any blood tests or scans after the surgery during that time, which would have shown the cancer was spreading before it got to the point where I needed emergency treatment etc.
Anyway moved forward now, but very difficult decision for you to make. Even if more lymph nodes had been removed I realise there are no guarantees.
I would suggest that whichever course you decide, try and see if you can get some follow up scans/regular blood tests (to check for tumour markers), to really keep check.
Wishing you all the best and hope all goes well.
Anjuli
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Hi @Anjuli. Thank you for sharing your story. There are many unknowns with this disease! I sincerely hope that you are recovered now, but I guess its hard to ever fully feel as if its over and done with. How did they find that you had cancer again? Did you have pain? I think that from now on I will worry about every pain I get. I will take your advice though and ask for scans to check if possible. I think a lot of us would feel happier if we could have regular checks.
Thank you x
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Hi,
My breast cancer spread to the sentinel lymph node only, and I was given the option to have full clearance or radiotherapy over the breast and lymph nodes, of which I had 15 sessions. I chose to have radio instead of clearance to avoid lymphedema, which so far so good is the case for me, I do exercise the area regularly to ensure this doesn’t happen. I also avoided two drains when I came out of the hospital, hope this helps. Good luck 
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Hi @Hadley207 . Thank you for your reply. That gives me a lot of hope that I might be able to choose if all the cirumstances are right. Good to hear that you are doing well since the radiotherapy. Thanks x
Hi I had a lumpectomy and slnb with 2 lymph nodes removed a year ago. One of the nodes was macro , the other one was ok. I went on to have radiotherapy but no lymph node clearance. Unfortunately I have since developed lymphoedema in the right breast itself , arm is ok so far. So even without a clearance there is still a chance you could get . I’m seeing a lovely lymphoedema nurse and a physio and it’s improving, but I need to manage it as a life long condition. So good luck with the results and don’t worry too much. It is manageable and treatable. X
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@suev Thank you for your response. There’s a lot to consider. Ive had 2 nodes out so far and still waiting for results but didnt realise even just having 2 out could cause lymphoedema too. So all things considered, I could develop it anyway without axillary clearance. I appreciate your reply. I hope that your lymphoedema is minimal and improves with the help youve been getting. X
The lymphoedema nurse said the seroma I had post surgery and I also had radiation burns / dermatitis from the radiotherapy - these were both red flag issues for the lymphoedema. It’s being managed ok at present. Good luck. X
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Thanks for the info…I had a seroma but a small one. x
The response to positive nodes seems very variable depending on where you’re being treated.
I had a large tumour (not visible on mammograms due to breast density ) and positive SLNB. I had an MRI scan a month post mastectomy which identified 2 more enlarged nodes which appeared to be actively growing, so went straight to chemo. The nodes were monitored during and after chemo and I was assessed as having a “complete response to treatment”.
I’d been determined to have axillary surgery, but was persuaded that radiotherapy would be just as effective, with less risk of lymphoedema. That seemed to be the opinion across the MDT at my cancer centre.
18 months on, and all I can say, with everything crossed, is so far so good!
Best wishes to all of you facing these difficult decisions XX
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Go flat! The best thing for your body if having to remove the breasts. Your body will thank you. Went thru deip flap 10 yrs ago-my body is still reeling. 5 surgeries & still so painful. The scar tissue is so awful. So much stress is put on the body when you are surgically removing and adding from another part of your body. My body has been in distress ever since. The 1st year was a piece of cake but the surgery(s) are so taxing on your body. Not worth it. Also they need to remove lymph nodes and the scar tissue just taxes your lymph system because it can block the flow. It is an awful procedure. Grateful to be alive but in so much pain from the decision. If you already have stomach issues def not a good procedure it redirects some of the nerves & can wreck havoc even more. GO FLAT!!! I just want them removed at this point but dreading another surgery.
Hi @sassycat. That might be an option for some but not for me as my lymph nodes are in my armpit and arm. I had lumpectomy, but its the axillary clearance that I’m worrying about if they find cancer in the sentinel nodes. I do hope that others see your comment though as it helps those with the difficult choices around mastectomy. I hope your recovery improves x
@jules_n Hi there. I’m so glad you are doing well. Your post has given me some ideas. I think if they say that there is cancer in my sentinel lymph nodes, then I will ask if I can have an mri to check other nodes before I decide on axillary clearance. Maybe then I will be able to have radio instead. Hope that everything keeps on going well. X
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I had all of mine removed and it ended up being only in two. To be honest I was happy for them to do too much rather than take the risk it wasn’t enough. I haven’t had issues with lymphoedema yet but it’s early days and I’m very careful. If it becomes a real issue they can transplant lymph nodes now so all is not lost. All that said though absolutely you should ask the questions, it’s your body. Wishing you all the best whatever the decision.
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Good to know. Thank you @cosette. I didn’t realise that they can transplant lymph nodes. I don’t know why I’m so worried about it…I havent even got the results yet! Hope you continue to do so well x
I had Mx and clear nodes after sentinel. So nothing further at the time. Back now after finding an enlarged node affected so if no node affected they will leave in but if any affected I would be getting rid of all. I wish they had taken all at the time as I wouldn’t be in this position maybe if they had.
Surgery not too bad (full clearance) and much more afraid of cancer than lymphedema. Also the way the surgeons do the op these days they are way more skilled in protecting against this and less likely. And if you do get it it doesn’t swell up to what it did years ago.
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Thanks @SL255. Good to hear that you are doing well post op, though sorry you had to have the second op. I have 1 week left of my 6 week wait for results! Hopefully its straight on to radiotherapy. Hope you recover quickly. X
Thanks recovery not too bad. Will have to have chemo and radiotherapy too! Didn’t expect to be back quite so fast!
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Thanks and best for your results too! Waiting is terrible
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