Lymph nodes

I can relate … I had similar with one macro of 6mm found in one out of two sentinel lymph nodes . I don’t have chemo or a lymph node clearance . It all depends on things like onco scores , what kind of cancer etc . It’s all quite different . But what I do want to say is that my oncologist despite me that lymph nodes in axilla being cancerous is v common . And it is curable . I was advised to have radiation to the axilla instead of a clearance and to go on lwtrozole and ribociclib for seven and three years following the radiation . The downside is I’ll never know whether I had more lymph nodes involved but radiation deals with that apparently .. I was similar in that I had a dry nipple and left it and was told it was a cyst .. then a year later biopsy revealed dcis but surgery revealed three invasives including lobular in the Brest amd axilla node … good luck and ask lots of questions . Ask if they are doing an Onco score and ask why they aren’t doing radiation instead of clearance but it will all depend on lots of factors .. xx

Hi I felt exactly like your feeling I had a 5 cm tumour that had clearly been present for a while I had 8 rounds of chemo 2 lumpectomies the cancer was still there so had to have mastectomy and total lymph clearance as they took 7 nodes the first one 4 had cancer in then when they did the mastectomy they did a total clearance which only showed the 4 the rest were ok that they took out I’ve just finished Radiotherepy 15 rounds of that tomorrow I find out about the meds I’m having , honestly if I can do it and I’m the worlds worse I suffer from health anxiety and it’s not all been easy but give it a go your be surprised how tough your mind can be … like Becky said each cancer treatment is tailored for each individual…when I had the masectomy and lumpectomies and lymph nodes they were all day stay my masectomy I had in the morning was allowed home in afternoon.. anything you want to ask please message on the site they are all so helpful … your not alone x

Same me re awful health anxiety xx 

It’s terrible people don’t get it unless you have it yourself .. it really takes over my life x

I had all my nodes removed on the right side 20 years ago. I was nervous at first about infections etc but after a while life sort of takes over. I'm still careful about insect bites bathing in deet when the wee beasties are about. 

I had lymphedema in that arm to and wore a sleeve for a long time but that improved over time and only appeared after I'd done too much. Making Christmas cards with 500 children in the same week was not a great idea. But you learn what aggravated these things and what to do about them.

I finished chemotherapy in March. I started in September. My hair fell out and I had off days but compared to the awful things SOME people go through it was a breeze. You might be like me. My new Hardwick sheep look has taken 5 years off.

Radiotherapy is often referred to the gift that keeps on giving. It can cause problems too years down the line. 

None of these treatments are risk free but neither is crossing the road. I've had BC three times and I would do all of it again in the blink of an eye. All the surgeries, radiotherapy treatments and the chemotherapy. There have been some tough patches but some amazing things inbetween. 

Think very carefully about what you want and don't forget you are entitled to a second opinion. I can't imagine what pictures you've been looking at. Dr Google is to be avoided.

Thank you, it wasn’t Dr Google where I saw the pictures, it was the surgeon in the hospital that showed me. One photo was of a hand liked to a well blown up rubber glove, another with an arm so swollen it was like an elephant leg. That was the photos. Not from Google. I have decided not to go tomorrow for the pre op tests. I need far more information first. I spoke to a MacMillan nurse at the hospital and rescheduled appointment for next week. 

I'm glad you've decided to give yourself more time.

I am amazed you were shown pictures of lymphedema like that. Has anyone else been shown photos like that? My hand looked a bit puffy and my rings felt right and that was it. When I had it in my left breast it just meant wearing a slightly tighter bra. 

Can I ask which hospital you are going to in the North of England?

I hope you get some helpful advice from the BC nurses.

I was not shown pictures of lymphedema at all and glad I wasn't .  I am glad you are taking more time to decide.

Lee x 

I too am glad you’ve given yourself more time. I’ve had a recurrence 6 years after my first, they think one of the hormone drugs may have let me down, or they didn’t get enough skin scrape at my first mx with implant This time the surgeon felt the nodes were ok, the cancer had mostly sneaked behind the implant, several nodes taken but felt soft and were small. However, one showed a little spread when pathology examined them. I was then prescribed radiotherapy to all chest, above sternum and all axilla and also Abemaciclib for 2 years plus a different hormone busting drug for 5 years. Just hope all that has done the trick. 

I hope they can tailor your treatment effectively. 

Hi, I had mastectomy and removal of 3 lymph nodes, 1 was found to have some cancer in it. I was advised to have clearance or radiotherapy. I was the found to be her2 +ve so had to have chemo. After chemo I was told I could have clearance, radiotherapy or neither - the decision was left to me and I lost a lot of sleep over what to do for the best.

I went with radiotherapy. I had 15 because I’d had a mastectomy with implant - it was thought that this would be kinder to the implant.

All this happened in 2021. I am 5 years clear tomorrow!!!

I think you are wise to give yourself more time to decide next steps, it’s a horrible scary time but you do get through it and out the other side. 

I retired from nursing in 2023 - I was not shown pictures of lymphoedema and have never met in my nursing career anyone with lymphoedema to that extent due to axillary clearance. I had a couple of appointments with a lymphoedema specialist nurse pre radio and again afterwards just as a safeguard. I had radio in Bath so not sure if this is the same everywhere.