Hi everyone.I wanted to ask this question for anyone with a breast cancer diagnosis and lymph node involvement.Did any of you say no thank you to chemo and went with radiotherapy, hormone blockers or no other treatment than surgery? in particular who is glad they made that decision and how are they doing now.Also is there anyone that due to high lymph node involvement didnt get the oncotype test? so never knew whether high or low score.Thanks in advance
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Not my personal scenario but have you tried putting your details into the Predict tool. I only found it through this forum and have found it informative. https://breast.v3.predict.cam/
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Hello, thanks for reply.Yes, i have used predict many times and for my own situation chemo only gives 3 to 4% benefit, hormone blockers give 12% but i really wanted to see if others had refused to have any treatment and whether they are still well and happy with decision
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Hi
I had a masectomy last year and partial lymph node removal. I had one round of chemo and was so ill that I made the decision not to continue. I used the Predict tool with my oncologist to help me make decisions. I was not told about the oncotype test. Not sure why so will ask my oncologist. I went on to have radiotherapy and am now just about to complete a year of Phesgo ( I am also Her2 positive). I have taken several hormone blockers and struggled with all of them but my oncologist advises me to continue with for as long as possible because I didn’t complete the chemo. Am I glad I didn’t complete chemo? No, I wish I could have tolerated it for peace of mind and so that I was not so reliant on hormone blockers. However, I don’t regret the decison that I made knowing how ill I felt and with the information I had in front to me at the time.
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Thanks for reply.Did you have many affected lymph nodes? thats probably why they didnt do oncotype test.What sort of ill was you with the chemotherapy if you dont mind my asking?Did the oncologist do the predict with you before of after the failed chemo? i hope you are doing well now?
Just a thought- don’t know how much of a consideration this would be for you: one of the travel insurance questions when you do the previous medical conditions declaration is whether you were ever offered a treatment and declined it.
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Hi, do not understand this? what are you referring to?
Firstly, 2 lymph nodes were removed and both were cancerous. That was frightening.
The chemo made me violently sick, constantly nauseous and very tired and weak. I collapsed at an appointment in hospital a fortnight after the infusion. It damaged my gut and I had to be referred to a gastroenterologist for an endoscopy (?) and take medication for acid reflux. I got oral thrush and all my hair fell out even after just one dose. I became hypersensitive to smells. I lost my appetite and had bad diarrhoea.
I was introduced to Predict by a MacMillan nurse. The oncologist used it with me before chemo and I have used it on my own since when weighing up further treatment options.
I’m still feeling grim but that’s probably because I’m coming to the end of my Phesgo treatment and becoming increasingly tired. Only one more month to go!
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Thanks for your reply.Sorry the chemo was horrendous for you! did you see a massive difference in your score with/without chemo? you must be HER2 positive? how long have you been on current treatment? i hope all go well for you 
@alfie10 - sorry you experienced this. What kind of chemo did you have?
docetaxel and carboplatin
Hi
Predict calculated that the chemo would have added 8% benefit over 5 years. Without it I have a calculated survival rate of 80% over 5 years. I am in my 60s so even without cancer I have a 7% risk of dying anyway according to Predict. I might have a different interpretation of what that 8% benefit from chemo meant to me from how you seee it. You’ll have to decide for yourself whether that was a “massive difference”.
Yes I am both oestrogen positive (ER) and HER2 positive. I wasn’t aware there was different types of breast cancer before my diagnosis.
I wish you all the best too!
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Hi, thanks for reply, i am vert anti chemo and awaiting oncologist appointment.Mine is oestrogen and progesterone positive but HER 2 neg.No i wouldnt do it for 8% benefit 
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Yes I refused chemo . I am 80 & prefer quality of life to quantity . I was very fit played golf etc so not weak . However I have had surgery ,Radiotherapy ,& Phesgo every 3 weeks also on Anastrozole hormone blockers . I’m OK & do not regret refusing chemo . I have just finished my 15 days of radiation .time will tell . Only your decision !
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Thank you for reply.Can i ask your diagnosis and if there was node involvement? it is such a huge stress as the oncotype test isnt carried out with 3 or more positive nodes which i find so very unfair as score could be low.
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I had HER2+positive . I had 20 lymph nodes removed 13 had cancer. I also had a second op to remove cancer margins which was successful . I still do not regret my choice . Please try & be positive it is a very very scary time . You must do what your gut tells you , I do have side effects from everything but am managing .In fact I am in Spain for 4 days visiting my brother . All is not lost we must live our lives as best we can . Good luck my friend .
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Bless you and thank you! Spain is beautiful.Enjoy
@bassiduck Happy Sunday. So nice to read such a positive post. Well done to you, life’s for living and you have certainly made it through your treatment. This will help so many on this site
Wishing you health and happiness going forward.
Hugs Tili 
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Hi
I didn’t have chemotherapy 6 years ago based entirely on the gene tests which predicted a negligible chance of cancer recurrence within 10 years. 5 years later it came back and mutated to triple negative her2 neg pdl1 negative throughout my spine ribs and pelvis. Stage 4. Prognosis 2 years. I wish I had had chemotherapy back in 2020
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Thanks for reply, so sorry to hear this.you made you decision back in 2020 on gene test information, thats really all any of us have.
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