New Info about Surviving Breast Cancer

Medigal

Ladies:  I saw my Oncologist today and finally got to ask him a lot of questions about my diagnosis and his answers were not what I expected.  It may be a "new" thinking to some of you also.  He said I have an aggressive cancer and a positive node.  When he put together all the factors of my particular bc, it came out that it would take at least 15 years of being without it returning before I could consider myself as having finally "survived" it.  He said that is why he is giving me the Arimidex as long as he can because I need extra help to survive it.  So I have about another 8 years without it returning before I can be at peace about being a survivor.

He still isn't happy about my posting on this group because he says we all may have different diagnosis and what is right for one patient may not be right for another.  What he has figured out to do for "me" may be completely different for what he would do for another patient.   He was also irritated that my new male gyn recommended Vagifem for me and is going to write him a letter about this.  He said research showed when tests were done on women who took Vagifem even at the lowest level, it raised their hormone levels to very high which was dangerous to their bc diagnosis. So it's NO estrogen at any level for me!  Replens is all I can take.  So at least I got to talk to him. 

However, I will not take his advice and abandon this group.  I do not feel we are harming each other as long as we are mature enough to realize all of our diagnosis are different and we have to do what "our" particular Onc recommends for us.   My computer was infested with a horrible virus this weekend and cost $300 to fix.  If you see me disappear for a while, it is not because of what my Onc said, it could be computer problems.  Have a great day!

lago

Medigal no one should be getting medical advice from a forum of people they don't even know. Sharing information allows us to consult with our doctors and ask questions… not demand they give us the same treatment.

There's no way in hell my onc would agree to Vagifem either since my tumor was hormone positive. To be honest I'm not taking Anastrozole and risking my bone health only to counter it with some Vagifem. I am having success with Replens.

I just started Anastrozole in March. We'll see 5 years from now what my onc recommends. I too have a very aggressive type of cancer but IMO any cancer that has the potential to spread to other organs is aggressive. There are plenty of women with grade 1 & 2 tumors that have metastized and many grade 3 that haven't. I think we all want to do what ever we can to to make sure it doesn't come back without compromising our health too much.

I have read for especially us hormone positive gals that 20 to 25 years seems to be the "possible cure" time frame… but they still aren't sure.

37antiques

Hi Medigal, Thank you for being brave enough to share this info.  I have been researching rates, and while a lot of information is old or unreliable, the general consensus does seem to be that there is no cure at this time AT ALL, and there is no solid information on survival rates past the 5 year mark.  The studies that do exist past that point have been small and sketchy at best.  Thankfully, new research is encouraging doctors to stop or take as few nodes as possible, since it does nothing but cause LE, the nodes are generally taken care of with chemo and the future risk is not worth it.  Not only that, but medicos have a tendency to scream nodes so loudly no one seems to realize it travels through the bloodstream as well, and I don't see them taking that out! 

If the medical field were to really make all of the information readily available, there would be a lot of people quaking in their boots.  I'm glad your onc has told you the facts straight out, I have been trying to get mine to do that for years and it just doesn't happen.  Maybe that is why he doesn't want you to post?  With all the indignities of cancer, we should at least know the facts, so I am elated your onc has been so forthcoming with you.

With all of the pushing for awareness, research and finding a cure, there needs to be a push to let us take control of our lives, too.

starbeauty

Well said 37antiques.