With surgery results day looming was wondering - if cancer is in my lymph nodes, do I have to have the axillary clearance? Is there an option to keep lymph nodes? Lots of people have them removed after 1 positive node but then 20 are removed and all negative. I’m wondering if there is an alternative because I’d like to avoid lymphodema. Thanks.
I haven’t had this experience but I’m sure I asked this question ( I’m a pesky patient who needs to know everything ) and I’m sure they said that in some cases radiotherapy directly to the lymph nodes can be done instead but please check with the Nurses in case I was wrong. The other thing was that they may have been talking about my case in particular as my cancer was a very slow growing one that rarely spreads . Xx
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I only had 1 sentinal lymoh node removed. This was cancerous but i was told it hadnt broken through the shell of the lymph node. I directly adked if id need surgery again but was told radiotherapy would solve any issues
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Thank you…If my surgery results show it’s in nodes, then I will be asking the question. Mine is grade 2. X
Thanks Theresa. I had 2 taken. I guess I will have to wait and see outcome. Still 2 out of 6 weeks left to wait! Hope you are okay now x
Hi bluesatsuma
I had 2 nodes removed and they both had cancer in one was a macro and one was a micro. I think they worked on the probability that it would be in more and so they just said full clearance two weeks later, no mention of radiotherapy and I didn’t ask, I was so shocked as up until that point they thought my nodes looked ok, then I think they were surprised it wasn’t in anymore.
It might make a difference if they are macro or micro to whether just radiotherapy is recommended.
As I am an anxious person I think removing the others to check was a better option for me as if I’d just had radiotherapy to that area I would be worried they hadn’t got it all, but obviously you may think very differently to how I do.
Just keep praying it isn’t in either then you won’t have that decision to think about 
Sending hugs to you
Jackie xx
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Hi @chillout365 Jackie, thanks for your reply. I had been watching the bbc show about Hannah Fry getting cancer. She’d had cervical and had all her lymph nodes removed in pelvic area then got lymphoedema as a result, yet none of the nodes had any cancer in when they tested them. I’m torn between taking the risk and having the nodes out. Hopefully my slnb will be clear. Was your axillary clearance ok? Hope you are on the mend xxx
Hi, I think when all the lymph nodes are removed it gives the medical team more information and they can then give appropriate treatment. When I had a lumpectomy 3 nodes were removed, 2 had cancer in them. I was given the option of total node clearance or radiation to the nodes. I asked the surgeon what she would do in my position and she said she would go for total clearance as it would give more information. I had total clearance, fortunately no further nodes were affected.
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Hi @shade. Thanks - good to know that you were given a choice about next steps. Also good to know that the rest of the nodes were clear. May I ask if you have you avoided lymphoedema? Hope you are doing well post op. X
Hi bluesatsuma, on Friday it will be a year since my node clearance and so far I haven’t had lymphoedema. For me it was the right decision as if I hadn’t had them removed I would have been convinced I had a lot more affected nodes. It’s a personal decision and if I develop lymphoedema in the future I may feel different.
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Thanks @shade. Glad you are doing so well. I am sure that you will continue to do so. It’s certainly food for thought…if I do have positive nodes, I will definitely think hard and ask dr for advice. I am literally finding all this waiting and wondering to be a waking nightmare. All I think about is ‘What if…’ and the idea of positive nodes is my latest focus. Oh well…2 weeks till answers! X
Hi
I’m definitely on the mend just waiting to start radiotherapy and hoping my planning appointment doesn’t get cancelled next week due to the dr’s strikes.
They went back in thru the snlb scar but it definitely took longer to recover than the original op, don’t think waiting for results helped either, very stressful and a small seroma.
I’ll keep my fingers crossed yours are clear and you can avoid that diversion of the pathway we are all following.
Keep us all up to date how you are doing
Jackie
Xx
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Thanks Jackie. Ive got my fingers crossed too. The drs did say the lymph nodes looked clear so I’m hoping so. I admire your positive attitude and I’m very glad that youre doing well. Hope the radiotherapy gets started soon. X
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I had 11 lymph nodes removed under my armpit and one on my chest wall witch I didn’t no about untill few weeks ago. Xx
I had 6 sentinel nodes removed during lumpectomy. 5/6 were cancerous so they recommended complete clearence following chemotherapy. A further 26 were removed, 25 still had active cancer cell’s ie. The chemo hadnt worked. When I knew the first nodes were positive I had no hesitation in having the rest removed but had they been clear or perhaps only the sentinel node positive then I may have thought differently. Thankfully they are all gone now and I had 15 sessions of radiotherapy. I used to worry about lymphodema but decided it would still be better than an armpit full of cancerous nodes. Until they test the first 2 or 3 sentinel nodes it is hard to know how you will feel about whether to get the rest removed. At the end of the day it is your body and you can decide what to do and how much risk you take or dont take and feel comfortable with. Ask your medical team for all your options from doing nothing to total clearance before making yiur decision. Best wishes.
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I’ve had a lumpsectomy and two lymph nodes removed. Lymph nodes clear but within a few weeks I had lymphodemia in the affected breast. This is manageable, like you I didn’t want it but then who wants cancer. Its a side effect that can be managed. Hope this helps.
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Hi @Kanapka87. Thanls for the reply. Did they give you any choice? Was this an axillary clearance? Did any contain any cancer? I hope you are on the mend now. X
Hi @Galaq. Thanls for your reply. May I ask what the cancer was that you had removed in lumpectomy? Mine is grade 2 hr+ her2- 30mm. I think that is smallish. They don’t think its in my nodes but then lots of people on here say they were told the same. Are you getting better now? Best wishes. X
Hi @Mary_1 . Thanks for the reply. Well i didn’t know you could get lymphoedema without having the full axillary clearance. I hope you are doing well and they are looking after you. Best wishes x
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Hi bluesatsuma, I had 1.6 cm invasive, est +ve lobular cancer grade 2. During all the diagnosis mammograms, biopsies etc they gave my lymph nodes an ultrasound scan and didnt think they were suspicious. After my lumpectomy they were very surprised themselves at the lymph node involment for such a small lump and again after the LN clearance.
I am doing well. I had my clearance in May 2022 followed by radiotherapy. 1st mammogram was clear and I’ve had a bone scan and chest CT since then and both clear. I am on letrozole for 10 years, abemaciclib for 2 and Zometra infusions every 6 months for 3 years. Iam now 60 and decided at the time if my diagnosis to take every treatment option that was on offer so there are no “what ifs” if it came back. Everyone is different and we will never really know if we should or should not have had the various treatments on offer. There are side effects to the current drugs I am on and lingering stuffness and numbness from the surgeries but I would do the same again. Sadly there are no easy choices once you’re on the BC train !!
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