Chemo or no chemo

Hi, 

Nov 16 mine was picked up on routine mammogram. 25mm (bigger than on scan) clear margins, no node involvement, grade 2, er pr pos, oncotype score 21.... Do you know your score? 

My onc did not give me option of chemo as said benefit would be too low taking in risks of chemo also said predict tool worked out benefit of 1%

Think oncotype score 25 or above would have meant different discussions. 

Jan this year I had my 1year mammogram and follow up appointment that was ok. 

I do really feel for you as remember I was very mixed up and unsure as to whether it was the best thing and had dreaded an intermediate score. 

I have moved on and you will be able to once your decision is made... Whatever it is. 

Feel free to ask any more I may be able to help with... Hoping it goes well for you. 

Hi

I think you have to do your research.  I am due a mascectomy on Thursday, triple negative 27mm tumour and I am not having chemo or radiotherapy but I have completely changed my diet and I am going down the alternative route.

It's your body and your decision.  Ever good wish what ever you do decide.

Morning Maria W

Thank you for your reply. I,like you, thought alternative route was right for me but I had a lumpectimy...now having over-read and over- thought, Im back to square one! Im normally quite decisive but my brain has gone to sleep! 

Wishing you well too.

Hi

Has your oncologist shown you your % benefit of chemo on the NHS predict tool?

I wasnt eligible for Onco DX due to node involvement but my oncologist talked me through predict results. Chemo for me at 10 yr survival gives about 5.5% benefit and his advice was that anything above 3% is worth chemo but I do know another lady on here was told her hospital only recommend chemo if benefit above 5%. 

Given my age (43) and having an 8 year old I agreed to chemo. But it wasnt an easy decision at all... I hate taking medication of any sort and I hate losing control of how I will feel each day. I am 25 days into chemo and still have long way to go and do wake up wondering if doing right thing but one thing the oncologist did say that struck a cord was if I declined chemo and got a recurrence or secondary in years to come  am I the sort of person who would remain confident I made the right initial decision or would I beat myself up.....because of my little girl I know I would do the latter so opted for chemo. 

Dont feel pressured to make decision this minute you can ask for more time but when you do decide I think you have to stay strong and not doubt yourself...easier said than done of course as BC messes with our heads!

Best wishes xxx

Joanne

Hello,

this is again one of the hardest decisions us BC peeps need to Make. But you must do it with as much information as you can. I would  question everything you can think of both to your oncologist and also your BCN.

i was told I would definitely need chemo byy surgeon so spent 2 weeks researching and questioning everything only to then be told by my oncologist that the % benefit would not outweigh the risks. I was in such turmoil I didn't know what was best. On one hand I wa relieved but on th other I was of the mindset that I wanted to throw everything at it to try and prevent recurrence.

i was Grade 2, 19mm, ER + HER- and a Ki score very low. I did have a macrometastese in one of 19lymph nodes removed. So what I then learnt was that my NHS predict score was 3.1% at 10 years and as JammyR said my oncologist would not advise chemo unless a 5% benefit. What I also learnt was that as all  lymph nodes subsequently removed were all clear this was a good sign along with the Ki score which indicates how aggressive the cancer is. Also a positive was the ER+ which then you can take hormone treatment for as another means of preventing reoccurrence. I had a long chat on the phone to my BCN whom I felt easier to talk with than the oncologist and she really set me straight. 

it is such a personal, individual thing. Reading other people's stories can help but you do need to be happy with your decision so you don't second guess yourself later down th line.

i am currently mid radiotherapy and other than th delightful tamoxifen I will hopefully be done in a couple of weeks.

good luck with your journey and best wishes

I saw your post the other day and decided to allow others who have made the decision recently and who are going through chemo to reply first. Now my take on it, but it is my take and my career was not in medicine and I have no medical knowledge, just life knowledge

I didn't go with Radiotherapy back in 2015 and hence I am here now. I am awaiting a further test to help me make my decision regarding chemo v radio or both. But if necessary, and after I have all the information from the professionals, I will make my decision if it is one, both and I am sure it will be RT. 

Now I am working as hard as I can to be as fit as I can to get through the next stage. But I am not going all out on giving everything up as some of the things I love I need to help me through all of this. Dramatically changing lifestyle whilst in the midst of BC is not for me and I am not sure there is enough evidence out there that would convince me eating x,y or z would make a massive difference. Or if I left out x, y or z would make a massive difference. I am in my early 60's so that no doubt has added to me decision too. So a healthy and balanced diet it is, plenty of walking, meditation and helping others.

There are many challenging parts to BC and all cancers. But these two: The waiting around for results and the decisions we need to make seem to fill the pages on this site.

As has been mentioned don't look back with regret as that can cause so much more stress.

Whatever you decide make sure it is informed from reputable sites, people who are living it and one you can sleep soundly with at night

Take care, possibly stop reading this now and make that decision with the support of the professionals caring for you and with the statistics you are given

Be gentle with yourself.

Leolady56

Hi

Thank you. Going against the standard advice is a lonely path and I think you need all the help you can get.  

Don't be pressured by me or anyone else.  I am here if you want to message me.

Maria

X

Hi Georgie18

I had a lumpectomy 22mm sentinel nod positive and a clearance where other nodes were clear.  Cancer is grade 3.

Whilst talking to consultant he said that the best chance of it not coming back was to have chemo.  If I had been in my seventies he said radiotherapy would be enough, but because I’m 45 it was better to have it. 

I believe I made the right decision to go ahead because it targets cancer not just in your breast but throughout your body, whereas radiotherapy only targets the breast area.

After having the operations I want to make sure as much as possible not to have further operations or treatment.

My breast cancer nurse is lovely and has gone through bc herself.  Originally she had lumpectomy followed by radiotherapy.  Two years later she had a mastectomy plus chemo.  

Although only small odds of getting it again, I believe it’s worth the symptoms of chemo to increase the odds of never getting it again however small.   Chemo isn’t nice,  it’s horrible.  It’s something to be suffered so that you get the best outcome.

I stand by my decision and understand that other people have different viewpoints concerning such a substantial life changing decision and it is a terrifying decision.  

My best advice would be to do what you think is best for you.  Write a pros and cons list.  Discuss with family and friends and if a decision weighs more in one direction, take that route.

Hugs xx

Thank you x

I am thinking the exact same thing. Got diagnosed 4th Jan with grade 2 ER+ HER2 negative. 22mm lump. I had a lumpectomy 29th Jan margins and lymph nodes are clear. I was told by my oncologist that I will start chemo next wednesday.

The reasoning behind this is simply down to my age (33). They want to blast it with all they have got to make the % lower of it coming back.

I will be having rads and tax tablets for 10years.

I have gone over and over will it be a high enough percent to go through the chemo experience and I thought no until when it was discussed the % of myself actually getting breast cancer in the first place was very low and I ended up with it anyway.

No family history, young age, No pain, No redness, No change of appearance of breast. It was just an off chance that my partner felt a small lump while we enjoying each other's company

I don't not want to do it and it then comes back again. I would beat myself up as to why I said no to chemo the 1st time round and it could of been avoided.

It' just so hard .....