Hi Everyone I am so desperately needing some advice. I am 5 months out of a lumpectomy for her2 bc. 1.4 cm tumor removed and I opted to not have lymph nodes removed or have chemo and radium and herceptin. I would have the herceptin but in our country we have to have chemo first and I just cannot do this.. I had a all clear pet scan 8 weeks ago and have felt great however one month ago my tumor markers went to 46 from 30 and just today had jumped to 89. I have only just seen my oncologist who moved my appointments to yearly as I had finished what treatment I wanted and not the standard of care they normally offer. I am pettrified has it spread? Does this mean that it has? The first jump to 46 I had a cold so I thought maybe that was it but now it is much higher. My GP sent me for a breast ultrasound 3 weeks ago and this was fine and all my other tumor markers and liver function etc was perfect.... I am so scared I am going to die with this her 2 bc can anyone help me? Are tumor markers are good indication whilst I am 5 months out of surgery and having no other treatment, Should I be worried? My oncologist said to contact her if I had any concerns... Shall I? Any advice would be appreciated. Especially with anyone who has this type of BC.

Are you in Australia? For early bc yes you need to at least have some taxol with the herceptin. I would contact your oncologist and ask the question about your concerns with the tumor markers. I too have a her2 breast cancer. ..but I chose a mastectomy, sentinal node biopsy, chemo and herceptin even though I am node negative.I am wondering if you are questioning your decisions? We all do. But it doesn't mean you cannot go back and revisit them. You could also discuss concerns with your breast care nurse. If you do re discuss decisions you need to ask questions about recurrence for not only 5 years but 10 years. Side effects can differ greatly for people and although someone can do it very hard on chemo...others do not. There is now research that supports that Ct-H can be as effective as ACT-H chemo and less toxic to the heart. Australia has one of the best statistics in the world for breast cancer survival for 5 and 10 years...I guess that is because of the current treatment regimes. Have you asked the question of your chances of recurrence without the treatment? These are hard questions to ask ...but are necessary.My niece had 2 miniscule her2 + breast lumps..less than 2mm ea, but 10 positive breast nodes out of 20. She had ACT-H and radiation and 14 years on is cancer free. I doubt that she would have got this far without that treatment. Hope all goes well. Kath x

Hi Primek Firstly thank you for your help. Yes I am in Qld and the answer to your question that perhaps I am questioning my decision well No I am not. Scared perhaps of my decision with my tumor markers elevated but I am certain I do not want chemo.. My oncologist told me last week it is to late for chemo etc now they like to do it no more than 9 weeks after surgery. I do feel alone though but fear is what it appears to be why we all choose to put ourselves through toxic treatments that seem to make us so very sick when we were feeling well before having it. I just can't fathom this treatment .

My decision for chemo was 6 months of feeling unwell outweighed the the statistics of 30% recurrence / metastic spread in 10 years as opposed to less than 10%. Having lost a sister to breast cancer and a SIL to endometrial cancer...who both missed there opportunities for early stage treatment changes your view I guess.Hoping you can find an explanation regarding the raised tumour markers...but my understanding is that this isn't a reliable method and only helpful in metastic breast cancer treatment.Take care. Kath x

You might find this link helpful.http://www.cancer.net/about-us/collaborations/top-five-list-oncology/choosing-wisely%C2%AE-top-five-cancer-related-tests-procedures-and-treatments-many-patients-do-not-need/topic-4-follow-tumor-marker-tests-and-imaging-tests-people-treated-breast-cancer

Thank you for that. I guess I will get even stricter with my alkaline diet and have another blood test in a few weeks. I have made an appointment at my oncologist for early next week. What scares me more than anything and I am sure every one with cancer is the fact you cannot see what is going on in your body at all.. I guess I was riding on a dream believing I was cured from the surgery. Are you on the herceptin yet? I am scared being so small and little with low iron and low wbc that I will be one of the ones chemo kills. But I am not ready to die at my age either..... Nightmares are made when bc is diagnosed. I just want to curl into a ball and forget this happened really.

Advice needed about tumor marker tests results today

12 Replies

primek
Member
9 years ago
I also just wanted to say that even with chemo I had weeks and weeks of sleepless nights and feeling terrified of the cancer returning and crying all the time. It eventually passed but even now I fear it and I don't believe anyone who experiences this damn disease could honestly not say they haven't felt this way at some point in their journey, regardless of choices made. I hope soon you feel less stressed but please go back to your GP if you find these feelings are overwhelming you. Kath x
primek
Member
9 years ago
I had ACT-H which is pretty much standard treatment for Her2 cancers...but they do have other regimes. The AC part makes you feel a bit unwell for a week ...but if you keep in touch with your team they can give you medications to counteract the side effects. You have bloods done prior each cycle to ensure not too anaemic and check for infection risk...and if your count gets really low after the 1st round then you usually have an injection to boost that. I had mainly bowel and bloating issues and being very tired ...but never needed hospital stay or even got a cold. The second part...taxol and herceptin...was better but you do get tired as the time goes on. I had bloods done weekly. They also closely monitor your heart function...I needed a 10 day break from herceptin but all good now. So the chemo...kills as many cells it can and the herceptin helps stop it making more...and hopefully they die a natural death. I had some fluid retention and gained lots of weight on chemo and mentally was miserable...but a few weeks on was feeling pretty good...and 10 weeks on I feel really well even though still on herceptin.

I too have an autoimmune disease and my specialist has just had really regular reviews and sends info to my oncologist team. They would not offer chemo if they thought your body couldn't cope.

I hope the nausea is nothing more than stress...which we all understand given what had been happening. But know YOU are strong enough to do this if the cancer has returned. Talk through your fears and get the support of the chemo team and breast care nurses to help you.

Please keep in touch and let us know how things go. Take care. Kath x
Sam09
Member
9 years ago
Hi Primek
Thank you for all your kind advice I like to hear from you as you have the same cancer as me.. I saw my oncologist today and she is very concerned about my tumor markers tripling in 8 weeks. I had hoped it was the cold I had the first blood test however they are raised again. I am totally freaking out and stressed out of my mind with what if s. She scared me senseless saying it can go to the brain and maybe my nausea is a symptom . I feel doomed and frightfully petrified this is totally sending me to the depths of despair and I cant shake off the doomed feeling at all. I cry get a bad headache and so on . I am petrified actually. I feel I want other women to talk to that like yourself have had this treatment just to feel comforted really by knowing they are feeling feelings like me and totally understand. I know when I ask questions my oncologist is honest so I do appreciate it however knowing what I could be facing is horrifying. I have never questioned my decision not to have the standard of care since my surgery 20 weeks ago and now if I am to have to consider having it because it is not gone from my body and perhaps spread then I know for a fact is it intense fear that is making me consider it.. I do not think I could feel that chemo toxin flow through my veins, I dont like to take a panadol I am so ridiculous about what I put in my body. I have low white blood cells and auto immune disease and I am only 47 kilos I think the chemo and treatment will kill me if I do it.. I guess it hasnt done much for me being a health fanatic here I am with an aggressive cancer. Please tell me about the chemo and herceptin and what sort of life I can expect if I do this treatment.
I would appreciate it greatly.
Jennifer1982
Member
9 years ago
Wow that's great Kath! Thanks for sharing. It is reassuring for me too. I believe I was treated appropriately!!

Jen
primek
Member
9 years ago
Breast Cancer Australia has released this today. It was detailed in the Mcgrath Foundation facebook page. I thought you would find it helpful in your monitoring.

https://thestatement.canceraustralia.gov.au/
Afraser
Member
9 years ago
Hi Sam09
First things first - you have every right to determine what treatment you have. All of us do. Unfortunately there is no guarantee about not rethinking or wondering "what if" - whatever we do, and however much (or little) treatment we have. More unfortunately there are no guarantees. That's why we fear cancer. It's scary, treatment is scary, side effects may be scary. There's been some interesting posts recently on this site about how the media (and others, let's be fair) can dwell on the doom and gloom. It's understandable, but it scares people witless at a very vulnerable time in their lives.
Treatment doesn't always work. Very sick people may feel and possibly get sicker as a result of their treatment. But as primek says, we are offered some indications about what has worked for others, why it may work for us, and ready or not (and we are not very ready most of the time) we need to make some decisions. I get amazed (and delighted) by how many advances have been made just in the last decade or so. Like you, I was HER2 positive (in one positive lymph node, not the main tumour - but that means the cancer was already mestasising). I had a mastectomy (tumour too large for a lumpectomy), lost 17 lymph glands (only one was positive, but no hard feelings, an awful lot looked well and truly affected!), had chemo, Herceptin and hormonal tablets. I did have some side effects from chemo, but all manageable and I was never sick and didn't have fatigue. The side effects are very variable. I have clocked up 4 years cancer free and looking forward to the Big 5, when my chances of recurrence drop sharply.
We all hope there is a simple, good answer to your test results. But if not, ask what are your options now and have a further think. There will be lots of people here to advise and talk to. You may still choose what you have already chosen, but you will have had some further time to reflect on what's best for you.
primek
Member
9 years ago
We can't see our future so we need to find a way to just believe we are cancer free. I am confident I was from surgery. I am still on herceptin and will be for another 8 months. At some stage I was able to shift from thinking I would die from this disease to thinking I will live. I don't know why or when but moving on from tests and treatment helped with that. I hope you can get to that place soon. Kath x
Sam09
Member
9 years ago
Thank you for that. I guess I will get even stricter with my alkaline diet and have another blood test in a few weeks. I have made an appointment at my oncologist for early next week. What scares me more than anything and I am sure every one with cancer is the fact you cannot see what is going on in your body at all.. I guess I was riding on a dream believing I was cured from the surgery. Are you on the herceptin yet? I am scared being so small and little with low iron and low wbc that I will be one of the ones chemo kills. But I am not ready to die at my age either..... Nightmares are made when bc is diagnosed. I just want to curl into a ball and forget this happened really.
primek
Member
9 years ago
You might find this link helpful.

http://www.cancer.net/about-us/collaborations/top-five-list-oncology/choosing-wisely%C2%AE-top-five-cancer-related-tests-procedures-and-treatments-many-patients-do-not-need/topic-4-follow-tumor-marker-tests-and-imaging-tests-people-treated-breast-cancer
primek
Member
9 years ago
My decision for chemo was 6 months of feeling unwell outweighed the the statistics of 30% recurrence / metastic spread in 10 years as opposed to less than 10%. Having lost a sister to breast cancer and a SIL to endometrial cancer...who both missed there opportunities for early stage treatment changes your view I guess.

Hoping you can find an explanation regarding the raised tumour markers...but my understanding is that this isn't a reliable method and only helpful in metastic breast cancer treatment.

Take care. Kath x