Can I ask a factual question please? If you develop cancer in another part of your body than the breast then I understand it is still called breast cancer? Does that mean then that if your breast cancer is hormone driven then all subsequent appearances of cancer elsewhere will also be hormone driven? Or am I being too simplistic?
cancer is very clever and very devious and it can change its status so even if the primary has certain characteristics any secondaries can change and be completly different - so you can have a negative hormone primary and postiive secondary and vice versa. Same with Her2 status. I have seen numerous examples of this on here. Sometimes Onc’s makes the assumption that it will be the same and treat it as such (thus limiting what treatment could be available) - they should really do a biopsy to check the status of each secondary.
Absolutely agree with saffronseed, my primary was her2 negative, My regional recurrence was her2 positive. Luckily my onc tested for it, and I received herceptin. X
Moser’s post raises the question - if she was to get a 2ndary dx would it have spread from the first primary or the second. A lot of us here have had more than one primary occurence but I wonder how many of those who then went on to have a 2ndary dx had that biopsied.
I would also say to sascha that sometimes when cancer is found elsewhere in the body after a primary breastcancer dx it isn’t always a secondary. Occasionally it can be a new/different primary cancer.
Dawn
xx
How will I know though - they are making significant cuts here in health budgets that are affecting expensive tests like scans etc…and my cancer has obviously been around for quite some time as when it first appeared it was already in lymph nodes too?
This really worries me, I am just about getting my head around the MX and LNC but the rest…I cannot even finds words to write about that.
to be honest I really don’t think (and maybe I an niave) that they would risk not giving you a scan if they felt you needed one - I think the docs have to justify it to the powers that be. They don’t and never have (as far as I am aware) do routine scanning ‘just in case’. You usually have to have symptons to get a scan - I have never been refused one.
Dawn is right in that you can get a reoccurance which is not a secondary and a re occurance can again be a different type of cancer just like mosers.
My view is have all the treatment that is offered to you - and ‘hope’ that the treatment does the trick and it doesn’t come back. You just need to stay vigilent there are no guarantees in all this and that is was does your head in - but you can’t live your life thinking ‘what if’ you need to think and believe that it might come back but then again it might not. xxx
Excellent responses from the other ladies that have posted wanted to add that sometimes its just not possible to biopsy secondaries, I have multiple tiny mets on both lungs and because they are so small they cannot biopsy them as I am on herceptin forever and taking tamoxifen I believe the combo of these two is keeping me stable so assume the mets on my lungs are her2+ and ER+ just like my primary was but other than doing biopsy which we cant do as too small, what else can they do?
Sending you love and light
sarahlouisexxx
Thanks for all the replies, it is doing my head in already!! I have always trusted my body until now and now I feel unsafe literally in myself…for me that is a huge loss…
For various reasons to do with other health conditions chemo (which is recommended for my kind of cancer) is not really a good option for me and that is why I am asking so many questions. I do believe in complementary medicine and finding alternatives to achieve the same goal but it is a lot more scary taking these decisions when its life or death and of course the doctors do pressure you to take the standard course of treatment.
I have started getting organised for the surgery and am getting really worried about it now - lymph nodes more than anything else as they are taking all of them…and that scares me enormously.
Ask away as much as you want. At the end of the day you have to make your own decisions and to do that you need to be informed.
I am no expert on cancer but having being diagnosed over 2 years ago now and being extremely frightened by it all and completely out of my depth - like you I trusted my body, I was fit, healthy and never had a days sickness in the previous 6 years - and suddenly I was told I had cancer. It had spread to my lymph nodes too - so needed a Mx and all Lymph nodes taken out - then chemo and then Rads.
I did consider my options but to be honest I really don’t think there was any other option for me. They recommend Chemo and Rads as in siginficant trials ladies who have had this treatment survived longer/had no reaccurance than those who did not have the treatment. For me its a no brainer and i would not even contipate not having it. It is not recommended as a matter of course and if they are pressurising you its not because its ‘standard’ its because they feel that by having this it will extend your life. So you need to think long and hard before you make your decision.
Having your all your lymph nodes out is not good I agree, but the op is not a big one and you should be out in a day or two. Your arm will be a bit stiff at first and you need to do the exercies they recommend. You also need to be extra careful with that arm as you can get Lymphodema which is quite dibilitating. There are ladies on here who have unfortunately got Lymphodema, but many more who have not and it does seem to be a bit of a lottery if you do or don’t. I am one of the lucky ones.
As far as chemo is concerned - again it is not good, but not that bad. if you have another health problem the medics will take that into account, when deciding on your chemo regime, you have it over a period of around 5 months and then rads afterwards - there are days when you feel tierd and unwell, but generally most people seem to get through it no bother (I even worked though it).
It may sound as if I am lecturing you, you have to make your own choice and live with your own decision - but I really really would recommend that if they are saying you should have chemo then you should have it and don’t take any chances. xx
I agree with what Safronseed and Dawn have told you. Secondaries can and do change their receptor, and new primaries can occur too… Really the only sure way of determining this is to do a biopsy, but quite often this is easier said than done. For example doing a biopsy into vertabrae would be quite dangerous.
I have routine scans, but at the outset, doctors have to suspect secondary cancer to initiate scans.
Just a point on the lymph node removal. It really wasn’t that long ago that full ANC was the only option - I was diagnosed just over 9 years ago and my surgeon was about to start trialling SNB at the time - and the vast majority of women have no complications as a result. You just need to make sure you do your exercises and follow the guidance you’re given, then hope for the best.
Good luck! Angelfalls xx