Hi, I've been chatting to some of you wonderful ladies here online and thought I'd give a little update on my journey. As you may know I was questioning the need for chemo in my BC case a while ago. Now I know chemo is on (starting tomorrow). According to path report the DCIS did actually have some invasion (node neg though), and because of my young age (I'm 45 and MO says anyone under 50 is considered young), high grade and Ki67 factor chemo is recommended. MO also said that even though the initial benefit from chemo may only be 1-2%, it will expand 10+% over the next 15 years and further. Although I don't like looking at BC statistics I did some research (occupational hazard in a way) and now totally agree with him. I'm having FEC x6, anyone else here had the same regimen? The whole idea scares the hell out of me though, I'm sad to lose my hair but mostly worried about the more serious side effects, to the heart and liver etc. But you gotta do what do gotta do... Another thing that I found interesting is that my MO did not disagree or forbid me taking any one of the supplements I had listed for the duration of chemo. I had about a dozen of them, some of which I take regularly and some that I intended to take while on chemo. I understand many (?) MOs do not allow chemo patients take any supplements but I was quite surprised he didn't have any problems with my "goodies" list. And he is quite a reputable oncology prof. I do thorough research on the supplements however, I have an access to the peer reviewed scientfic journals thanks to my master public health studies (almost done!) and can say there are a lot of interesting studies out there on supplementing, cancer and chemo. I'd be interested in hearing what your/the other oncologists have said about the supplementing. Annie :)

Hi Annie, This is Natalie, we had a discussion about not doing chemo. If you dont mind me asking, what swayed your decision. I have said no to chemo and yes to radiation at this stage. My nurse rang me this morning and said they hadnt contacvted me for a week hoping I would have time to think and change my mind. I can honestly say no, I may be starting to doubt this decision. Your thoughts would be appreciated. Thanks , Natalie xxx

Chemo is scary at first- I almost did a runner! My poor oncologist didn't have a clue about supplements when I took my bottles in .He's a professor as well. He was ok with it though.Like you,I did my own research.I stopped flaxseed tabs when I started Tamoxifen as there was some controversy about that one. Sometimes with chemo,you are struggling to get a cracker and water down,let alone a supplement.Your body will soon tell you what can pass your lips. Your appetite goes awol and the inside of your mouth feels like fur.I lived off lemonaide iceblocks,lemon cordial,vegie soup and crackers.Good luck Annie and I hope chemo is not too hard on you. Tonya xx

Hi Natalie, the decision was a hard one, I dread the whole idea of the chemo but fear recurrences more... if the benefit was as low as 1-2% I probably wouldn't do it, but after having a good look at research on chemo's longterm benefit I decided it was worth it. As a scientist I believe in evidence based medicine and statistics, even when it's about something as terrifying as chemotherapy. Unlike many other cancers BC is a devious one, can stay dormant and re-emerge years later. I rather do chemo now to kill any stray cancer buggers than find them lurking in my body in years to come, secondaries are always tougher to treat... A couple of months of "suffering" is nothing if it gives me longevity, helps me to hang around to see my son growing up, getting married and having kids. I understand your dilemma, chemo is a tough call.. In a way i hope I could just snap out of this nightmare and not do it, but in reality I know that I need chemo to kick this damn cancer out of my body, for good. forever. I gotta belive in that. If you decide against chemo that is fine because it's your choice. I think it's good that you're doing radiation though, it is very effective with lumpectomies. I don't know whether this helped at all but I hope you'll find the right treatment choice for you. Keep me posted on how you're travelling. /Annie

Thanks Tonya, I know it won't necessarily be an easy ride and eating, let alone supplementing, may be tough at times. But anyways, I'm now fully armed with supplements that I'm hoping will provide me with some protection for the chemo side-effects. I think part of my plan is also a placebo effect but don't care if it works nonetheless! -Annie

Well Annie, Today I changed my mind, and I'm starting chemo in a couple of days. Over the past 48 hours a lot has happened such as my daughters year 6 farewell and the sudden realisation that what would happen if I wasn't there for the next major formal or affair? And a call from my breast cancer nurse at a time when I finally fell to pieces about it all and told her just how scared I am. I feel somewhat relieved even though I havent started. I even went looking at nice scarves this evening. Let's hope I don't change my mind again ... I'm prone to that ha ha ha

chemo | BCNA Online Network

13 Replies

anniep
Member
13 years ago
Hi dawngirl, just sent you a private message, hope it helps!
dawngirl
Member
13 years ago
Thanks in advance for letting me intrude on this thread...I am struggling with the to chemo or not question ... as I have been told most of my benefit will come from Tamoxifen, and no-one in nny treatment team is prepared to come out and say I should have chemo...that I am in a "grey" area of whether it is worth it for the 2-3% max increase in reduction of recurrence risk...versus increases risk of leukemia (which I already have courtesy of my mum having it), so the oncologist said I was to decide on the basis of my personality. Ridiculous. I want to decide on the basis of science and what will be best to stop this thing from getting a grip elsewhere! I am interested to read here that the 1-2 % improvement increases to 10 % over time...I can't find anything like that to read....and my oncology appointment was rushed, at the end of a massive week for the doctor, and left me with more questions than answers. Are you able to point me in the direction of the studies that show the increased benefit over time? Thanks x
Jk48au
Member
13 years ago
Like your spirit Annie......we WILLkick this cancer in the butt!!!!! Australia does have some of the best methods and results, which is so good for us all. Merry Christmas Annie I hope you get to enjoy this festive season and hope for you and myself and all of us fighting this horrible thing called cancer, that 2013 will help us conquer it . Regards Jill
anniep
Member
13 years ago
Hi Jill, am wishing good luck to you too!

No, BC stats are not nice to look at but I try to see the positive side of it, had we not the options of surgery/chemo/radiation/Tamoxifen/herceptin etc the stats would be very depressing. I'm also glad being here in Australia where the treatments + survival rates are top of the class, I'm from Europe and their stats are not as good in comparison...

We shall kick the cancer in the butt girls! Annie :)
anniep
Member
13 years ago
Hi Natalie, I know how you feel, chemo is scary. but I can tell you that now 8 hrs after 1st chemo I'm fine, no nausea or other problems. Lets hope it stays that way, it's good that the nurses gave me a full arsenal of stuff for preventing side-effects. The chemo itself was easy peasy, I was a bit nervous to start with but it didn't hurt and had no major issues. I cried a little bit though, but because the nurse started to talk about kids, and the thought of my beautiful son just broke me, he is the incentive for me doing chemo.

Like Tonya said they do not recommend chemo for just the hell of it, and what I also read and find in research is that too often the ones who slipped chemo for a reason or another have had a relapse, and although being node negative is a plus the nasty buggers can still hide somewhere in you body. So good on you girl for your decision. I hope the treatments will work out fine for you, if you need a chat just send me a private email like before. Annie xx
TonyaM
Member
13 years ago
If all the medical staff are saying you need chemo,then you probably do.I didn't have chemo after my first bc episode -just lumpectomy and radiation.I was naughty and didn't stay on Tamoxifen and so I got a recurrence 7 years later.Had to have a mastectomy,chemo and then Tamoxifen.I dare not stop it now. I can understand how scared you are of chemo- I was too. You can only try it and see how you go.My oncologist said that SOME chemo is better than none.I didn't complete all my chemo rounds cos I ended up in hospital with an infection and next to no white cells.My doctor was ok about me stopping chemo so long as I stayed on Tamoxifen.My cancer was eostrogen +ve and hercept -ve so responds well to hormone therapy.Some women find it liberating to be bald but I sure didn't! I got my head gear from www.headcovers.com - soft cotton bandanas and caps were good in summer.My expensive wig was too hot and itchy to wear for more than an hour or so and couldn't wear it in summer.Good luck with your decisions and chemo - I know how you feel.

Tonya xx
Jk48au
Member
13 years ago
Hi there I have been reading of your dilemma. Sixteen years ago I had DCIS in my right breast no invasive cells none in my nodes. I was given 5 weeks of radiation which was a total of 30 doses as I had two on a Wednesday. All went well until late October this year and my nipple flattened completely, hence a biopsy, and mastectomy, now chemo and herceptin which I began yesterday. Things have changed in methods over these years and I was never offered chemo nor tamoxifen those days, maybe and it is a maybe .....I might not be having this struggle again. I hope you come to terms with it, looking at statics of your mortality is so hard to take in. I have been told my type of tumour could return as I have HER2 positive proteins in my body, so I am willing to take what they suggest to stop it returning again. Take care and good luck with your journey Regards jill
catcrazy
Member
13 years ago
Well Annie,

Today I changed my mind, and I'm starting chemo in a couple of days. Over the past 48 hours a lot has happened such as my daughters year 6 farewell and the sudden realisation that what would happen if I wasn't there for the next major formal or affair? And a call from my breast cancer nurse at a time when I finally fell to pieces about it all and told her just how scared I am. I feel somewhat relieved even though I havent started. I even went looking at nice scarves this evening. Let's hope I don't change my mind again ... I'm prone to that ha ha ha
catcrazy
Member
13 years ago
Well Annie,

Today I changed my mind, and I'm starting chemo in a couple of days. Over the past 48 hours a lot has happened such as my daughters year 6 farewell and the sudden realisation that what would happen if I wasn't there for the next major formal or affair? And a call from my breast cancer nurse at a time when I finally fell to pieces about it all and told her just how scared I am. I feel somewhat relieved even though I havent started. I even went looking at nice scarves this evening. Let's hope I don't change my mind again ... I'm prone to that ha ha ha
anniep
Member
13 years ago
Thanks Tonya, I know it won't necessarily be an easy ride and eating, let alone supplementing, may be tough at times. But anyways, I'm now fully armed with supplements that I'm hoping will provide me with some protection for the chemo side-effects. I think part of my plan is also a placebo effect but don't care if it works nonetheless! -Annie