Tumour markers not working for me

lesleyb

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.

primek

So sorry about what has happened. Wonder if the new trial will include fosamax, the osteoporosis medication also. I believe the 2 together can stop bone mets. Hope all goes well.

melclarity

I have heard of tumor markers, but how do they test that? Ive never had that done so wouldnt even know? I have extreme fatigue but I put it down to side effects of chemo still and being a single parent, as in just running on empty. My bone density scan was terrible, with osteoporsis in my lumbar and neck, so am on Prolia injections twice a year. 

lrb_03

My understanding with tumour markers is that they aren't terribly reliable, particularly with stage 1& 2 bc. Used more, and a little more reliable with stage iv, but still not infallible.  Rarely done for early stage bc, so that might explain why you haven't had them done, Mel, even after a recurrence. 
Lesley, thanks for raising the subject.
Take care, Lyn

Terrirocks

And I have never had any tumour markers but I still have stage 4 tumours.

Sam09

I am wondering if there is any correlation between high cholesterol and elevating tumor markers. I had a pet scan 11 weeks ago that was clear however my CA 15 tumor markers have gone from 30 to 46 to 89 to 130 in 10 weeks. Strangely I have elevated cholesterol to 6.9 as well. I am a vegetarian health nut that is as fit as I am humanely possible to be and I can only put it down that my surgeon removed my Gall Bladder when I was having surgery for another matter in 2010. For future prevention he said when HELLO I didnt eat fat and there was no future prevention from gall stones grrrrrrr. I actually wanted to keep my gallbladder and would have been happy to do so..
So I am hoping the elevating markers are from the high cholesterol and I have had to be even stricter with my diet now no dairy at all only food from the ground and all organic. But...... I am still scared stiff, because of the elevating TM's my oncologist wanted to do another CT scan full body and a bone scan. But I have put these off and her appointment a few weeks to see if the alkaline diet brings down the cholesterol and tumor markers and if this is the case wont have the tests as I worry about radiation in my body and I have had all these tests in the past few months since diagnosis.
What are the symptoms of Breast Cancer spreading, I have her 2 stage 1 invasive ductal carcinoma and declined chemo rad and herceptin,I may have no choice one day sadly. Every pain and headache I stress greatly. How does one live with the stress and terror of this disease and can we ever be happy again.....

lesleyb

Sam, i don't think TM's work for early stage BC which is what you have.   Your oncologist is the best person to aim these questions at.

.  I waited 9 years for my cancer to become stage 1V after having treatment for Stage 2B IDC.  As far as knowing when it has metastasized, listen to your body.  If you notice any unusual  and severe pain in your bones (as was the case with me) then you should bring it up with your onc.  I also noticed I was extremely tired before I was DX.  Others who progressed straight to their organs may have different signs.  Mine hasn't gone that far yet.

This disease is very sneaky, so be vigilant, eat a healthy diet, lots of exercise and take your Aromatose inhibitors for as long as you can.  Don't stop after 5 years as was the standard after I was diagnosed the first time around.  It is a great protector for those who have Hormone positive BC.

As I said in my previous post, TM's are not very  reliable in many people.

i know your TM's can rise a little if you have an infection but I have never heard of it changing due to high cholesterol.  But I am not a GP.

Take a deep breath, relax, move forward with your life.  Don't worry about progression to Stage 1V.  There's not a lot you can do to prevent it.  If you are one of the 30% who will progress, then that is very unfortunate but it may not even happen.  You have a 70% chance of not progressing. 

Just forward your questions on to your onc next time you visit.

lesleyb

Oh and by the way, I had my gall bladder out about 30 years ago and have never changed my diet because of it.  I feel fine in that area

melclarity

@lrb_03

Oh I understand it a little more, although I was Stage 3 aggressive IDC my 2nd diagnosis last year?? 

@lesleyb

Goodness was interesting reading your story. I have severe lumbar spine pain since last year, but a scan showed I have osteoporosis in it and my neck thanks to Chemo. Fatigue I honestly put down to side effects of Chemo. Really makes you think..

Sam, I too have friends who have Her2 Breast Cancer, I'm ER+ only, but they said particularly because of their diagnosis they chose the path of Chemo. Very individual decision for sure.

Melinda xo

Sam09

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.  

Sam09

oh and I liked the percentage rate for progression. I will look at it that way it makes it easier. 

melclarity

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

lesleyb

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.

melclarity

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.

primek

@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.

Share

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