New and so confused

Newby24

I am Grade 2, sentinel lymph node free, deciding if the 4 or 5% difference of having Chemo or going straight into radiation and onto tablets and with the added severe family history of kidney and heart disease. So confused ‘do I do Chemo or not’ I know it’s my decision but would like to know if other women have same or similar diagnosis. The oncologist said last week you have 6% extra chance of survival and then today said 4 or 5%. 

Chelley59

Sorry Newby24 are you saying your BC is stage 2 ...there are stages of the ca and grades of the cancer x

Newby24

Sorry I am really new and I think they said grade 2 because of the size. They apparently got it all and the margins are quite clear.

Afraser

Have you a doctor or specialist who can advise specifically in relation to your family history? The oncologist is trying to reduce your risk of cancer recurrence but you may find a decision easier if someone else with specialist knowledge can advise about the potential risks some chemotherapies may have in relation to other health factors. These risks may actually be very small but you are entitled to know about them. Your treatment is your decision but you want to make it with as much information as possible. Seeking a second, specialised opinion is just being practical. Best wishes. 

Newby24

Thank you and I did see my cancer nurse today and asked her lots of questions, I then went to dietician and asked about foods while on chemo and then to my local doctor and asked about my family history and chemo so I had a full overhaul of blood counts and get results back Wednesday. I have put my chemo back a week so I can further investigate. My cancer nurse contacted my oncologist today and told him of my fears and he said with only the 4 to 5% difference he would be okay with me not going down the chemo track. So I am totally confused. 

iserbrown

https://www.bcna.org.au/understanding-breast-cancer/treatment/chemotherapy/

The link above may broaden your understanding and there are links within that page

Take care 

Afraser

Your oncologist has proposed what he considers, on medical evidence, to be the best combination of treatments to keep you cancer free. But it's not an exact science. You might have chemo and get a recurrence. You might not have chemo and be fine. Your oncologist knows that individuals have different reactions to treatments and is understanding of your concerns. Wait till you have further information on Wednesday and things may be clearer then. Best wishes. 

kmakm

Hi @Newby24.

This question comes up a lot here. One of our members likes to translate the percentages into numbers. It goes something like this: there's one thousand people in a room. They're told they all have breast cancer. 900 have their tumour removed and radiotherapy and they get to leave. 100 are left and are told they're going to die. But then 50 are told that they're going to have chemo and so they too get to leave the room.

I may not have got that exactly right, but you get the drift!

For me it came down to not having any regrets. If my cancer comes back it comes back, but I won't be tortured by an 'if only'. I've thrown the kitchen sink at mine and I will never be tortured by what ifs, if it returns. This is important to me.

Ask your doctor if a genomic test would be useful. If you can afford it (they can cost up to $4000) they can determine if chemotherapy would have a curative benefit if some cancer cells have escaped and are looking for somewhere else to grow in your body.

It's so hard when there's an element of choice. Listen to your gut, be true to yourself and those you hold dearest. Chemo is the best medicine we have now, but it's not without cost to our bodies and minds. You are right to question it, but also know that for most people nowadays it's not the horror show it was a generation ago.

Good luck with your decision and let us know what you decide. K xox

Sister

I have it bookmarked @kmakm because it helped me so much (thanks to @allyjay)

 "Purely on the statistical side, for me, when faced with the same decision as you now are, I looked at it from different angles. One of the scenarios for me was this. I was in a room with 1000 women who were told that they had been diagnosed with my type and grade of breast cancer.  We were all told to have such and such surgery, which  we did. We were then taken back to that same dreaded room and given a card with a number. Then 830 numbers were read out, and those women were  allowed to leave the room  and go next door  for a celebratory cup of tea and slice of cake....considered cured  (10 years). The other 170 shocked women looked at each other with dread. Just then the compere said...."Oh sorry, I  forgot, I have another 70 numbers to draw, that is the women who had additional chemo, they can pick up their bags and join the  others". If, perchance I was one  of the 100 left behind to the future of stage four, would I  wish that I might  have been one of the other 70, or would I go "Que Sera  Sera..." and accept it? For me the answer was "Fuck no" bring it all on, and if  the wheels still fall off, at least I would have given it my best shot, and not have been left with the perhaps..." Each of us has to weigh it all up, make our decisions and then go forward. As Afraser says, having started chemo, you can always stop. But it doesn't work the other way. Best of luck."

For me too, it was a case of not looking back with regret that I could have done more.  For me, family history is losing a sister to BC against a strong incidence of heart disease.  I honestly do not recall what percentage advantage the chemo gave me but it was enough to sway me.  In the end, you have to go with what you can live with.

AllyJay

Percentages are fine when they're just a number on a graph, it's when you become a percentage that it becomes personal. Nobody else can make this decision for you, but yourself, but I agree with @kmakm with the regrets situation. If you choose not to have the chemo and your cancer returns, will you at that point regret not having given it a go? It may or may not have made a difference, but could you be happy with the "what if". I think sometimes that we in the modern society see percentages of 5% as being trivial. If the local shoe shop has adverts in the window of "Today Only.. 5% off all shoes", there is not exactly a stampede into the shop. We think 5%...pfffftttt, not worth the effort, I'll wait till next week and see if they offer more. It you return and see that there has been no further discount, we are not distressed as it was "only" five percent. Five percent of children in a large school of a thousand pupils is fifty. If the parents of a school were told that a deadly disease was going to strike their school, they would be horrified. If they were told a vaccine exists, which has variable side effects, but only offered a five percent extra coverage, they might decide not to vaccinate. However the parents of fifty children who die, might well be left with the "what if". I reckon, do as all the other members above have suggested, look at all your informed options, then make your decision. Remember, we only get one bite of the apple here.

Patti J

All I  know is @Newby24: when I  was  diagnosed with stage 1, 16 years ago,  a nurse near where I  worked, chose to try the natural route. She didn't  have chemo. or any sort of conventional treatment. She died not long after.
I had AC chemo., Tamoxifen for 5 years, tried Arimidex but it gave me migraines, so I  didn't continue with it.
I am still alive. I do have mets but I can still do most things I used to. I push myself continuously.
To look at me, you would have no idea of my diagnosis. 
Do what ever you can to stop this disease. Your doctors know best.

~Millie~

I had stage 2, clear margins, clear nodes and chose not to have chemo. My numbers were 88% chance of making 10 years without chemo, wouldn't make it to 90% with chemo even if it had maximum benefit. Being 42 at the time I was very concerned about the long term collateral damage to my health / body from chemo with such a small maximum potential benefit. Then there was the fact I was self employed, going through the physical and emotional trauma plus financial didn't seem worth it for such a minimal possible improvement. Choosing quality of life over quantity. Then there was the fact the onc said ''chemo is only going to kill cancer cells that are there now, and you probably don't currently have cancer", but yet he was prepared to make a few bucks out of a brutal treatment. Still shaking my head over that visit. If nodes weren't clear, then I would have chosen chemo. Best of luck to everyone with their treatment choices. xx

Andrea_J1

@Newby24, I get where yo are coming from.  I had breast conserving bilat mammoplasty 4 weeks ago.  I got my results yesterday.  Both tumours were removed with clear margins, my right sentinel nodes(3) were clear, my left sentinel nodes were not (2 of 4 were affected).  I am now on another whirlwind trip of treatment/surgery.  It is really overwhelming, but you do have to do what is right for you. xoxoxo

arpie

Sorry to hear that @Andrea_J1  -  your medical team will be organising the best treatment for you  -  and we'll be thinking of you as you go ahead with your treatment/surgery.

Ask away any questions that you may have - maybe in it's own thread?

All the best xxxx  Hugs coming your way  xx

Newby24

This is so hard cause today I woke and am thinking as most people say if I want to fight I have to throw everything possible at it. I also sometimes feel guilty as some people on here are giving it all they can and in some cases over and over. Thank you to everyone that commented it really means a lot. 

Sister

You know, they talk about fighting and battles as if it's something that we can win if we try hard enough.  The truth is, you do what you can do, and hope that it is enough - there's no fighting involved.  You listen to the experts' advice, weigh it up against quality of life, and go ahead.  You either get lucky with the draw or you don't.  So, do what feels right for you and then move on without guilt.