Forum Discussion
Chemo or not
Hi,
I am 3 weeks out from a bi lateral mastectomy with immediate reconstruction and only had sentinal nodes removed, one one each side.
I have recovered really well except a recurring seroma but it isn't painful just annoying really. I was told today by the nurse that they have recommended chemo. This is the only thing during this process that I wanted to avoid. The surgery results were all clear, with clear margins and nothing found in nodes.
I had DCIS in right and idc in left but was low grade and 13mm. I'm confused as to why they want me to have chemo. They say its because I'm young (40) but I feel that's not a medical reason as to why I should have it. I don't see the oncologist for a few weeks but it is driving me insane already.
Does anyone have any advise or a similar situation and did or didn't have chemo. Any info will be a great help.
Thanks
Marney
13 Replies
Hi again
Just wondering how you are going with your decision making...
I hope it's all going well for you.
Sharon
Hi again
Just wondering how you are going with your decision making...
I hope it's all going well for you.
Sharon
- Thanks so much ladies. As always, a great help. Xxxx
To chemo or not is one of the hardest decisions. You need more details on your cancer pathology ie.was it eostrogen +ve?was it hercepton -ve or +ve? I was eostrogen +ve and hercepton -ve (nodes all clear) and my oncologist said that Tamoxifen would offer me more protection than chemo. But because mine was a recurrence(7yrs later in the same breast) I had to have chemo.I didn't have chemo the first time around,just radiation and I didn't take Tamoxifen for the required period.Chemotherapy is a big decision and not to be taken lightly.I ended up in hospital after the first round with a life threatening infection.However,we are all different and some women sail through it and some struggle dreadfully.I would say that if a few doctors are telling you that you HAVE to have chemo then you probably need it.But if they are leaving it up to you to decide then perhaps you don't.You need to ask alot more questions before you come to a comfortable decision that feels right for you.
Tonya xx
Hi Marney.
There's no Australian distributor, so I got them from the lovely Vanessa Kaye in New Zealand. She used them herself hen she did chemo a year ago, and was verey happy to talk to me on the phone. She did skype training so we knew exactly how to use them. You can find all the details here;
They are very cold for the first 2-3mins, but then it settles down. It wasn't too uncomfortable, and I certainly found that it was worth it to keep my hair!
They go on for 50min prior to the chemo, during the chemo and 4hrs after.
Hope this helps!
Let me know how you go...
Sharon
Hi Marney.
There's no Australian distributor, so I got them from the lovely Vanessa Kaye in New Zealand. She used them herself hen she did chemo a year ago, and was verey happy to talk to me on the phone. She did skype training so we knew exactly how to use them. You can find all the details here;
They are very cold for the first 2-3mins, but then it settles down. It wasn't too uncomfortable, and I certainly found that it was worth it to keep my hair!
They go on for 50min prior to the chemo, during the chemo and 4hrs after.
Hope this helps!
Let me know how you go...
Sharon
- Hi Sharon Thanks so much for replying. I will certainly talk to oncologist. I have heard about the penguin cold caps, in fact my mum lives in Victoria and told me about the article. Where did you get the cold cap from? I'm in brisbane and not sure where to find them. Are they as painful as it says, do you where it for a long time? Thanks again for you kind words and advice. Marney xx
Hi Marney.
Your oncologist will be able to go through all the risk factors and the projected outcomes. There's a website they can use (adjuvantonlone.com) where they pucnh in your risk factors; age, comorbidity, hormonal receptors, tumour grade, size, nodes etc. Then they can put it various options for treatment you might do in addition to the surgery, for both hormonal and chemo. It calculates the 10year survival rates, based on giant databases of people with previous cancer and their treatment and the outcomes.
I think lots of people are uncomfortable with maths and statistics, so you might have to ask them to show you the figures. In my case "no additional therapy" gave about 70% 10year survival. The Chemo plus hormonal treatments that my oncologist recommended gave about 90% 10year survival. For me, that made it worth doing.
Another thing to think about is, what makes you nervous about doing chemo? Often our perception of what it will be like is coloured by what we see in movies and TV. Lazy script writers use "bald and vomiting" as a way of ending a character because the actor has quit or the contract ran out. It's not actually realistic.
While I'm not saying chemo is a walk in the park (I did it 10 years ago and am doing it again now.) The anti nausea drugs are pretty good nowdays. I'm using Pengiun Cold Caps and I still have my hair! There was an article in today's Held Sun (in Melbourne, not sure where you are?) about them.
The other side effects vary between drugs, and some people get more than others. Tiredness is pretty common.
Anyway, good luck with whatever comes next, I hope you are able to find some calm to consider your options and choose the best way forward.
Sharon
Hi Marney.
Your oncologist will be able to go through all the risk factors and the projected outcomes. There's a website they can use (adjuvantonlone.com) where they pucnh in your risk factors; age, comorbidity, hormonal receptors, tumour grade, size, nodes etc. Then they can put it various options for treatment you might do in addition to the surgery, for both hormonal and chemo. It calculates the 10year survival rates, based on giant databases of people with previous cancer and their treatment and the outcomes.
I think lots of people are uncomfortable with maths and statistics, so you might have to ask them to show you the figures. In my case "no additional therapy" gave about 70% 10year survival. The Chemo plus hormonal treatments that my oncologist recommended gave about 90% 10year survival. For me, that made it worth doing.
Another thing to think about is, what makes you nervous about doing chemo? Often our perception of what it will be like is coloured by what we see in movies and TV. Lazy script writers use "bald and vomiting" as a way of ending a character because the actor has quit or the contract ran out. It's not actually realistic.
While I'm not saying chemo is a walk in the park (I did it 10 years ago and am doing it again now.) The anti nausea drugs are pretty good nowdays. I'm using Pengiun Cold Caps and I still have my hair! There was an article in today's Held Sun (in Melbourne, not sure where you are?) about them.
The other side effects vary between drugs, and some people get more than others. Tiredness is pretty common.
Anyway, good luck with whatever comes next, I hope you are able to find some calm to consider your options and choose the best way forward.
Sharon
Hi Marney, My story is similar to Louise - just different year for the first diagnosis. I definately "lined up" with the second diagnosis. First time around the "add on" percentage of reoccurance over a 10 year period was not enough for me to opt to have chemo. Also my margins were clear and no lymp nodes were involved (that we knew of). If I knew at the first diagnosis what I did at the second - I would have definately had the test done to ascertain if chemo should have been undertaken. Keep asking questions of your oncologist XLeonie
