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Breast Cancer Haven
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Lymph nodes

I need to hear some positive stories..... I’m scared... all the positive stories I’ve read all included clear lymph nodes, mine aren’t and I’m scared.....

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Hi Tricia, when I had my lumpectomies back in 2013 lymph nodes were tested during the surgery, left side clear, right side 3 were cancerous so surgeon removed them all, with that arm now I need to be a bit careful, not using it for heavy tasks, i will gently rub it up and down at times to keep the lymph fluid moving, but I've had no problems since the surgery, if you're worrying about lymphoedema, as I was, try not to, easier said than done, as with what I've found out for myself, no one knows why some people get lymphoedema some don't, sometimes it appears soonish after surgery some not for 20 yrs, if you need any more info always message me, best wishes Jenny x

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I’m worried that if it’s gone in my lymph nodes that it’s spread, I couldn’t bear the idea that my kids will loose both parents to this cruel disease.

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Hi Tricia,

I was diagnosed in August 2015, Grade 3 with 27 lymph nodes all cancer, an extra lump found when operating and it had cancer and 2 slivers on my liver, after 15 months of treatment I’m still here lol on tamoxifen, no I’m not the same person I was physically and defo more tired but I work up to 60hrs a week with children and am doing great. Take each day as it comes I bet you’ll do great xxx

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I had my lumpectomy last March. Two lymph nodes had cancer and the surgeon was surprised because they didn't turn up in the MRI. All the cancer was removed. Last month, I had my follow up screening and I'm all clear, I'm happy to say!

Had you not had your surgery yet?

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I had lumpectomy and 2 nodes removed, both had cancer so having a full clearance on 18th, then wait and see if anymore nodes and then bone and ct scan. They said the nodes look fine so we’re surprise to have cancer in them... but that has been my luck all along, my tumour didn’t look like cancer it looked benign but obviously wasn’t. Thank you for giving me some hope. I’ve been having nightmares and crying constantly since being told.

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My cousin had bc 10 years ago, she had cancer in the nodes, she is fine now , my neighbour had bc 5 years ago she is also fine.

Try to stay positive, the treatments used now are much better than they ever used to be, and they are making more discoveries all the time.

I decided to change my diet and life style after my bc 4 years ago, I am now a veggie and hardly have diary in my diet, I felt I needed to do something positive to help.

Take care Deb x

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Thank you x

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Hi TriciaPen, I was diagnosed with DCIS in 2012. They did a lumpectomy and found a small amount of aggressive cancer they had not spotted on the ultrasound following my mamogram. They went back in and did a mastectomy and removed all my lymph nodes. No further cancer was found but I have since developed Lymphoedema in that arm. I had chemotherapy and three years later when I found a lump in my tummy they did a full body ct scan. They found no cancer (just a hiatus hernia) and I have been clear now for over 7 years. I still worry that the cancer will come back but mostly I tell myself what my counsellor told me back in 2012. There is no point in worrying. Eat well, live your life as actively as you can, even doing everything you do with your 'good' arm with your Lymphoedema arm (within reason). Worrying just makes you tired, saps your energy and brings you down so that if the worst happens and the cancer comes back you have no strength to cope with it. Technology is improving year on year. If your cancer comes back they will find it early and you will fight it by being strong and you will win. In the meantime try not to worry. It's hard and I don't always follow that advice but please try. Your children need a strong mother so 'don't worry, be happy'. I'm always here if you need to talk. Gina xx

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I had 10 lymph nodes removed and five were cancerous. I have still not decided how they decide how many to take. I did develop lymphoedema @ 3 years later and still have swollen arm wearing compression sleeve all the time.

It's a bit like toothache sometimes, but I try and swim twice a week and do other arm exercises.

I am a mental health nurse working 30 hours a week so feel it doesn't restrict me. Though I would like another career but all the ones I look at involve some kind of lifting...so stuck at the moment 😀😀

I had breast cancer and lung cancer in 2010...my journey continues.

Good luck with yours

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Hi TriciaPen, its ok to feel scared. It sounds like you are in good hands and it was lovely to read some of the positive responses to your post. good luck with the treatment. xx

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Hi TP, I had a lumpectomy in 2016 and they found cancer in the sentinel lymph node, so I had chemo and rad and finished March 2017. It’s all gone and I am fine. At MD Anderson they don’t remove all the lymph nodes, just the first one (found via radiation seed implanted). I was strong and positive and held on tight. My doc was so kind and kept telling me I would be all right. Afterward, I let go and relaxed. Now, life is normal and I am grateful every day. I was HER2-, ER PR +. Stay positive and give it your best.

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Hi Tricia, something I didn't put in my earlier reply, i didn't have chemo, just radiotherapy and all mammograms since have been clear

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Hi Tricia

I was diagnosed with Lobular Breast cancer and 9 out of 11 lymph nodes removed had cancer cells. I had a mastectomy 6 rounds of chemo and 13 rounds of radiotherapy.

I also had 10 years of taking Arimidex.

Am still here and its 11 years since my diagnosis.

I know a lot of ladies on the Macmillan site who had lymph nodes effected and doing well.

All the best to you.

Sue xxx

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Thank you sue xx

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PS I have never had a hint of lymphoedema either. Am lucky I think xxxxxxx

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Hi TriciaPen,

I hope my story will help you feel better.

I had a mastectomy and thirteen lymph nodes removed in 1994 at the age of 39.

Six of the nodes were positive.

I had chemo and radiotherapy, and when I had a bone scan I was convinced it had gone to my bones and I thought I wasn't going to last the year, thankfully my bones were clear.

My daughter was eleven at the time so I understand how you feel, but here I am now

64 years old, and have seen my daughter give me two beautiful Grandchildren.

I do this gives you the strength to stay positive.

Wishing you all the best of luck.

Take care Elaine

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Hello, I've really debated whether to respond to you, whether you would find my story helpful, but here goes, I hope it is.

I was treated for breast cancer in 2016 - had all the treatment, surgery, node clearance, chemo and radiotherapy, then 12 months of tamoxifen.

All the way through treatment I was told that I was going to be fine and not to worry about it returning. This turned the thought of the cancer coming back into a huge scary thing. No one told me what would happen if it did.

Well last year they found breast cancer metastasis in my bones. I was very scared until I realised actually it's ok. The oncologist told me that it wasn't curable but it was treatable and there are a lot of treatment options and combinations they can try. He said that metastatic breast cancer is on the verge of being considered a chronic long term disease.

I'm 51, I have monthly injections and take a daily tablet which is a form of targeted chemo. This gives me fewer side effects than tamoxifen. The progression has stopped and the last scans showed areas of healing. I work full time, last weekend I did an 8 mile walk, and do everything I want to do. I'm living life to the fullest.

Even with node involvement you have a small chance of the cancer coming back but if it does there is effective treatment available.

I know it's easier said than done but stop worrying about something that is unlikely to happen and enjoy life.

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Your story and journey share has given me so much hope you could not realise. Thank you for sharing and inspiring us. Amazing Woman xx

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Thank you :-) I'm not unusual, there are so many of us with 'advanced' cancer living completely normal lives. You don't see us because we look like everyone else.

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Oh Julie thank you!!! I really appreciate you sharing your experience must have been tough to share xxx I really appreciate your positivity and this helps so much xxx I wish you well you are inspiring xxx

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I was worried that I might scare you. I am positive but I am also fitter and healthier than I have ever been. Since my original diagnosis and treatment, I don't get so stressed by small things, I exercise, I eat well, get enough sleep and spend my time with people I enjoy being with.

I've just read your profile and you have had a really tough time, no wonder you are worried. But remember different cancers could almost be classified as different diseases, some are more responsive to treatment than others. My aunts had breast cancer in the 1990s and their treatment was very different to what's available today. Even in the last 3 years I've seen significant advances in treatment. Worry is exhausting and completely understandable, but redirect that energy to things you enjoy, you'll feel better for it 😊 Xxx

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