Forum Discussion
Tumour markers not working for me
Well my tm is not working for me. Dx nearly two years ago and have only had Arimidex and Denosumab. I also have a benign tumour in my salivary gland which is how they found the progression into my cervical spine and in my humerus (left arm). The progression in my spine especially the C2 and C4 had progressed so far that I am not able to have surgery or stereotactic radiotherapy to reduce it immeasurably. I can have normal RT but it is not as effective. During the last 2 years my TM's have hovered between 30 and 40, up and down, up and down. I felt ok except for the tiredness during the last 6 months because the cancer was progressing and the Arimidex was no longer working. I knew something wasn't right because of the fatigue which is common with cancer progression. But I trusted my onc. to be on the ball. Do your research everyone. Oncologists just cannot keep up with all the changes in treatments. I have found so many things due to my own research that my onc did not know e.g. my diagnosis had changed from Lobular to Ductal but it wasn't picked up during my second biopsy when I was diagnosed with mets, Leterozole is now on the PBS to name a couple
I had not had a bone scan since February as my onc didn't think I needed one as my TM's were good and I wasn't feeling any pain.
I will be starting Tamoxifen or a new trial based at Peter Mac soon.
So i guess what I am saying is do not rely solely on your Tumour Markers. If they are stable for a long length of time and you are feeling more fatigued than usual, ask your onc to order a scan to check for progression. These TM's work for most people but there are a few like me that cannot rely on it.
I had not had a bone scan since February as my onc didn't think I needed one as my TM's were good and I wasn't feeling any pain.
I will be starting Tamoxifen or a new trial based at Peter Mac soon.
So i guess what I am saying is do not rely solely on your Tumour Markers. If they are stable for a long length of time and you are feeling more fatigued than usual, ask your onc to order a scan to check for progression. These TM's work for most people but there are a few like me that cannot rely on it.
18 Replies
- Well said @Share
- <3 @Melclarity - just need to keep it real xxxx
- Sheryl
I absolutely agree with you, having had a recurrence at the 4yr mark also, exercised, good diet blah blah blah...didnt stop it coming back. The irony of it all was, I did a rehab course through Epworth Hospital with 4 other lovely ladies and NONE of us fitted the criteria of what the supposed experts 'say' are the risks of getting Breast Cancer.
I too exactly the same!!! I eat well, but I also never deny myself all the yummy stuff whenever I want...life is to be lived. Its about moderation only...the Medical Team floored me with their take on it all because we are hammered about diet and exercise as to reasons we got Breast Cancer or obesity. Uuuugh!!! Each to their own, but I tell any friends who have had a diagnosis recently, dont beat yourself up or kill yourself over diet and exercise, do what makes you happy and feel good...that is the only key about it.
Hugs Sheryl!!! xxxx All supposition ladies and of course soooo much information out there.
I have a love/hate relationship with October - breast cancer awareness month. Everyone you know suddenly becomes an expert ! At what treatment is available, latest drugs, clinical trials, exercise etc etc.
For what it is worth - I have always adhered to a good diet. Sugar is not added to tea, coffee, cereal for me. The baking I do (mainly for the family) has the only added sugar. It is those "hidden" sugars in some foods that are a bit sinister !
Don't eat organic, tried it after the first diagnosis and then got a recurrence in the same breast 4 years later. Yeah, I like my chocolate every now and then but even my sister (who is a nurse) blatantly told me to "stop eating so healthily - you have done it all your life and where has it got you !".
As an aside, I was 37 years old when I was first diagnosed with stage 1 er+ bc. I am 152cm and my average weight pre bc (when not pregnant) is 45 kg's.
My boys were 5 and 2 years old and due to problems with miscarriages, had 4 pregnancies in 4 years. If that is not oestrogen hormone hell waiting to happen, I don't know what is !!
Just before my 50th, diagnosed with mbc in the bones. Have not got any taller (unfortunately !) and weight had not increased.
I don't expend energy on the "what if's" anymore - life is way too precious.
Hugs to all xxxx
Sheryl
- @lesleyb Yes ...they say it is a risk factor...but is it really? Or is it just that the majority of women that get breast ca are over 50 and have middle age spread, there aren't actual studies...just some stats. Stats don't always show cause...just findings. All interesting. I know that def if have an estrogen + ca best to reduce weight which reduces circulating estrogen. Plus weight is linked to all cancers I think...more about the food probably than just the weight.
- Certainly interesting but the medical professionals at the Epworth Hospital all said its not substantiated and it really surprised me very much. All they said about sugar is because it causes obesity. Crazy though im slim and so are most women who are friends who have had breast cancer. Makes no sense. Well balanced diet ive always had and always exercised too...ive had breast cancer twice go figure. Uuugh.
- But the facts are that being overweight is one of the highest risks for breast cancer though and that is unfortunately a fact. I think moderation in everything without denial on occasions is the way to go. I think it is debatable that high carbs and sugar intake do not increase progression in BC. There are many experts who believe it is a highly contributing factor to acceleration.
- Being fit and healthy, with a great diet, is absolutely so important, but horribly this disease doesn't discriminate uuugh. I know lots of people who eat well and are fit who get Cancer and lots that have horrendous lifestyles and have never had Cancer. No rhyme or reason, its more about doing what feels good for you...At the 8 week rehab I attended this year, it included a Dietician and she said its just about eating a well balanced diet, there are no foods that prevent or cause in their belief Cancer. Any findings there are, she said are minority studies. This really surprised me. They made it really clear just eat healthy for you and try a little exercise. Enjoying life is the key...however that looks to anyone...I love sweets hahaha! not everyday but I dont deny myself one little thing lol. The more I delve into Alternative Medicine the more interesting it becomes...I dont regret doing Chemo however as I know thats the only thing I could do to erradicate it. xo
- oh and I liked the percentage rate for progression. I will look at it that way it makes it easier.
- Thank you ladies I appreciate your feedback. Lesleyb I don't take any drugs, my onc never offered anything but chemo rad and herceptin in which i declined. I couldnt eat a healthier diet I eat only alkaline organic and have the policy if it doesnt grow in the ground don't eat it. Not that I like it all that much. I just pray they got it all in surgery which I am 6 months out of, however I have in the last three days had a weird pain in my middle back that doesnt last long. I do have a very large puppy that yanks me sometimes on our walks so hopefully it is that.
I wouldnt ask my onc or gp about the cholesterol because they know only what they learn from a text book.One thing about this disease they really want desperately a cure however perhaps finding why it happens and a prevention would be just as beneficial. I never ask about natural remedies etc they mostly either do not believe it or simply cannot look outside the book they learn't.. I am slightly worried as I am a avid weights workout person and have very strong abs therefore never in my life had back pain. It isnt double over pain just a weird throb late in the afternoon for about 10 minutes. Apart from that I feel fantastic super fit and healthy so I guess I will have to go tomorrow and have the bone scan.
