Hi there, I recently had a lumpectomy and sentinel node biopsy where they took 2 nodes. Unfortunately both of those nodes showed traces of cancer so the next step was to do an axillary node clearance and now I am terrified of developing lymphoedema… I’m a fit and active 45 year old mum of two boys and I guess my body image means more to me than I realised. I’m not sure what I’m hoping to gain from this forum apart from some words of encouragement and reassurance that perhaps I won’t develop it or if I do it’s likely to be very mild… I just can’t stop thinking about it and worry about every twinge or sensation in my left arm. Perhaps this fear will disappear with time. I know I am battling something bigger but the long term affects are scary… thanks
Hi loop29
I’m abit older than you 58 at diagnosis this time last year. I had an initial lumpectomy and slnb
where it was found in the two nodes removed. I went on to have a full clearance and it wasn’t found in anymore. Like you say I was initially scared of anything around my left arm but so far so good and it is getting easier. I carry anti sceptic cream in my bag with me now and keep on with the exercises.
I try not to look up to much as I’m a worrier and will have every side effect going.
Hope you get on okay and try to think positive thoughts about it all.
Sending hugs
Xx
Hi, I had lymph nodes removed Feb 2023 following 2/3 lymph nodes having cancer. Full node clearance followed and none of the 17 lymph nodes removed had cancer in them. So far no lymphoedema. I’m now 63, normal BMI and keep myself fit and active. Development of lymphoedema is a normal concern but posts on this group are usually made when we have concerns or problems. We don’t tend to post to say we have no problems with lymphoedema and that our lumpectomy scar is now a faint line and you can’t really see we have had surgery.
Hi there, I had a mastectomy last year and full node clearance (with 7LN out of 19 positive for cancer) and I was 49 y.o. at diagnosis. One year later, all is fine. I don’t have any lymphoedema and I don’t have any issues using my arm (I did have physioptherapy which helped immensely). I’m still concerned that lymphoedema could develop at any time and the only thing under my control is to make sure I stay active and healthy with normal BMI. I’m careful using sun scream and mosquito repellant and I use my “healthy” arm for blood tests or blood pressure (I have heard it doesn’t matter but I don’t want to take the risk, since I can use my other arm).
Hope all goes well for you. Big Hugs
Thank you so much for such reassuring replies and so quickly too… It is so appreciated 
To hear stories that are so similar to mine with a positive twist is really helpful. It’s all so scary and raw right now. And I feel quite alone in terms of knowing other people who have been or are going through the same thing. Thank you xx
I’m also sorry that you have been through this too… it’s so hard to stay positive but perhaps this forum will help me with that.
Sending hugs back xx
Hi @loop29
I was also worried about this so I researched options and there is a type of surgery called LVA - more info here: LVA with axillary lymph node clearance - Overview | Guy's and St Thomas' NHS Foundation Trust
I asked my breast surgeon if I could have the LVA operation as a preventative measure and she referred me to a plastic surgeon at another hospital who does the op on the NHS and I’m due to have it soon. He said it reduces the chance of developing lymphoedema to 10%. So may be worth asking your surgeon about this to see if you can access it?
Hi @loop29
I had SLNB in June 2022 and cancer found in 1 node out of 2. I then had full clearance in the August and found in 1/16.
In the last few months I noticed some swelling in my hand/fingers and confirmed as very mild lymphoedema. Referred to lymphoedema service and given a sleeve/glove to manage it.
Hopefully that’s as bad as it gets?
With hindsight I’d still have clearance. I know its 2/19, they’re removed, lymphoedema is mild, hopefully manageable, got compression garments, take care with antiseptic, gloves etc… I can try lymph massage if I need
But I realise people are different so has to be something you’re comfy with
Laura
Hi @loop29 . I too had to have an axillary clearance after positive sentinel nodes. I was 46 (47 now) and like you i was so worried about lymphodema, especially as I’m overweight. I have 3 kids, a full time career and am always, always busy. Cancer has slowed me down and i didnt want to end up with a lifelong condition as a result.
However, its 6 months since my ALND, and so far therre is no sign of it. There was more cancer in my lymph nodes and I’m now having chemo. So I’m glad it was done. You can refuse it, and they’ll give you radiotherapy to axilla instead. But there is a risk of lymphodema with that too.
I did everything i could do to try to prevent lymphodema…exercise, healthy bmi (still working on that), wear gloves when gardening etc… Nothing by normal currently in that arm thankfully. They said if I do develop it, it was very manageable these days and most people managed it well. There’s a documentary on bbc iplayer about the tv mathematician Dr Hannah Fry. She had surgery for cervical cancer and now has lymphodema in her leg. I found it interesting.
Anyway, good luck, but try not to worry about lymphodema. Instead get rid of your cancer and do all the things you can to minimise the risks. Chances are, you will be fine. X