What do u do if there is a miss DX with secoundaries???

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1

Hi All,

I am really confused, panicky and scared at the moment! I am worried in what to believe and how to deal with it.

I was dx with BC in July 08, I have had a WLE which was not successful then went on to have a masectomy 3wks later. I have had so many ct scan in such a sort time and various other treatments & drugs. I fell seriously ill feb/mar with hypercalceamia and was in hospital for nearly 4wks where they dx me it liver mets via a ultra sound scan. I was told to enjoy what quality of life as my liver showed hardly any recognisable normal tissue. The Dr at the time told my OH to take me home and that he should prepare for the worse and gave me 4/6months!!!

I was referred back to an amazing female onc who was determined not to give up and put me on 6 x Taxotere and another ct scan. At this point I have no veins that were usable so I had a hickman line in which was a god send.

This is where it gets confusing! After sort of coming to terms with my dx my onc sent me for another ct scan after 3 x taxotere ( i hope I am not boring anyone)
my ct scan was very confusing for both my onc and the radiologist as they thought I may hav also chirrosis and hep a/b. I was then advised to hav a liver biopsy which was 3wks ago.

I got my results wednesday 8th June!! The onc said that it was getting more confusing as both the biopsy cores came back totally “NORMAL” they found NO Hep, NO chirrosis and NO CANCER!!!

I asked “Do I have Liver Mets”
REply “No”
I asked “how is this possible”
Reply " she is unsure, she would have been very surprised if the chemo had got rid of every trace after 3 cycles, and that the nodules left could possible be fatty deposits as for anything else that was there, if it was cancer the biopsy would have shown at least one live or dead cancer cell but there was nothing!"

OH asks " Did she have liver mets in the first place"
REply " that is a possiblity"

I am shocked elated confused scared to believe what she is telling me, I have not stopped crying half with happiness that I will see my kids grow up but scared that they have got it wrong! I have been through so much in less than a year and I am so glad that we did not tell the children!

I am not angry but my emotions are worse than what they were when I was first DX.

My onc is seeking a second opinion from the liver specialist who will view everything and advice what to do next! wether it be another ct scan or an MRI.

But the worse bit is I have to wait till the 6th August for the conclusion.

Has anyone else been through this, I am so scared, My family have been through this with me and I hate how it has happened. I cant get angry I do feel like I have one the lottery, but I am so scared to believe it. I asked my onc 4 times “Do I have Liver mets” and she replied everytime “No, the signs are showing u do not” She told me to enjoy the news and take it as positive and she will c me in August.
OMG what else can they throw at me…

I am sorry for this long thread but I just needed to get it out and see if anyone can advice.
And before you ask I have booked that holiday!

Thank you for reading this and I hope you are still awake.
Hugs
Melx

x

2

Hi Mel

It sounds as though you have had quite a stressful time lately, if you feel it would help to talk things through on a one to one basis, please call our helpline for a chat with one of our specialist nurses who may have come across a similar situation before and can offer you further support and a ‘listening ear’. The number to call is 0808 800 6000 9am-5pm Mon to Fri and Sat 9am-2pm.

Best wishes
Lucy

3

Oh Mel what a thing to go through. I am not very good with words but it must have been horrendous for you to be given that diagnosis. How come the first doctor got it so wrong and put you and your family through that worry and anxiety. You poor thing. I can’t even start to think what you went through and a damn good job you saw the oncologist.

It’s so hard waiting for results and fingers crossed for August.

When do you go on your hols?

Much love and lots of hugs

Liz xxx

4

Thanks Liz
I go to Rhodes on the 20th August! So those results better be the right conclusion that my onc has said!
R u on the Breast Buddies Facebook site?
Hugs
Mel

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I’m sure they will be as it all seems so positive. Can’t believe that first doctor. I just wonder how many other people’s lives he made a mess of. Your onc seems to positive about your results.

It will be a big celebration for you when you get then. God I sould like those people who say to you “it will be okay” ! but it does sound good.

Not on the Breast Buddies site yet . I am on Facebook though but don’t really use it as not sure how it works. My 2 girls are on it and I’m bothered that they can read my messages !! I look at theirs though (naughty!) - I can keep trace on youngest one then ! like when she was in Liverpool and supposed to be at Uni !!

Sorry I cant give you any advice about your diagnosis but I am sure other ladies will have had something similar happen to them. Keep posting

Love to you

Liz xxx

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wow what a story .im so pleased for you ,cant understand how they could have got things so wrong ,and i would ask for a though investigation for putting you and your family in that situation .god knows how i would have coped .my liver secondaries are dormant at the moment as the chemo i had after mastectomy knocked out the cancer ,so so far im ok .it will be hard for you to relax before the final results are back ,try to forget for a while ,there must be a god !! enjoy your hols .lynn x

7

Thank Liz,

I do wonder if anyone else has had their life messed up by the first dr.
If you do want to join the facebook one it is
Breast Buddies!!!

It is a closed so and invites only for those who have BC or Had BC

It is light hearted and jooly and a good laugh as well as advice.

I to hope that they hav got it right his time!
Hugs
Mel
xx

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Hi Mel,
my first thought on reading your post was a liver biopsy, then read you have had one!..I self inject methotrexate each week for Crohn’s and it is known to be highly toxic to the liver. My gastro once said he was going to schedule a liver biopsy, but talked to a liver specialist at my hospital, who advised against it. Think my liver function tests were a bit elevated.

You might ask your GP if he can do liver function tests for you - it is a simple drawing of blood - I have them every month along with kidney, whole blood count, c-reactive protein etc. If your liver is dysfunctional, something abnormal will show on these blood tests. The results come back to my GP within 4-5 days. Tell him/her how scared and confused you are and need some temporary conclusion, so you can relax.

I’ve just hiked out my last print-out and the liver function tests are:
Serum total protein
Serum albumin
Serum glogulin
Serum alkaline phosphates
Serum total bilirunin level
AST -aspartate transam. (SGOT)

I am not entirely surely what they all mean - I did google them yonks ago - but the print out shows the normal range in parenthesis, and your own score. Simple enough for even for me to understand.

This may help to put your mind at rest if the LFT’s are within normal range.

I would seriously be thinking about reporting the doctor who told you to “get your affairs in order”. Perhaps you could contact either the phone-in service here, and/or your PALS unit for advice on how to proceed, the latter service at our hospital we have used in the past to complain about the delay in my husband’s treatment. It was sorted by the next day.

Hope the liver specialist’s opinion on 6th August is poitive.
Lizziecee

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Thanks Lizziecee,

I have my bloods taken every week because Im on warfarin due to the hickman line.
My LFTS Liver functions were way over a 1000 when I had hypercalceamia which they thought was caused by the liver mets. BUt after discussing it with other professionals they say that the primary BC could hav elevated the hormones that could hav triggered the high calcium in my blood as my cancer is hormone driven! THis could have been building up for seveal months. But as LFTS are not done when full blood test are done for pre chemo it was not picked up so we dont know.
But Hypercalceamia is not always cancer driven. So there are so many ?

the other possiblity is that my liver had try to filter so much treatment and drugs in such a short time it could not repair any damaged tissue so may have just built up and become swollen. Also hypercalceamia can leave calcium deposits on organs that can look like caner cells or abnormal cells.

Conmfused Yet I sure am.

Hugs
Mel
xx

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Crikey Mel, what a totally extraordinary story. No wonder your emotions are totally all over the place. You say you don’t feel angry, and of course you have every reason to celebrate - effectively you have just been given your life back. But I wouldn’t be surprised if you go through every emotion imaginable at some time - what a terrible ordeal you and your family have been put through and now you must be totally, utterly confused (relieved, but confused!). I must say that if it was me I would certainly be wanting - needing - a medical professional to go through all my notes and to very clearly explain to me what had happened and how this had all occured - had some of the results been wrong, or muddled up - or are you just a medical miracle! Think I’d want it in writing as well, as it is all so confusing. But the bottom line is, what totally fabulous news, and do hope that you have a wonderful holiday. Please let us know any developments - yours is such an incredible story. Sarah xx

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Mel - this thread has just brought back something that happened to me the January before I was diagnosed in the May with breast cancer. I had my bloods done and the LFT was very high and doc sent me for a liver scan. This was okay so things were left. Do you think that the BC was showing up in my LFT result? You’d think the GP would have looked into it more then even though scan was okay.

Also I had gone to my GP before with my left breast which was getting bigger. The lady doctor had a good feel and said it was okay but then I found I had breast cancer on routine mammogram. I can’t remember how long before I saw the doctor though.

God - your life in their hands. Scary

Liz xxx

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Hi Mel,
not sure of your time-line - you mentioned dx July 2008 - must have been a typo as I’m not there yet! When were you dx initially and have you been on any bc adjuvant meds like tamoxifen or one of the Aromatose Inhibitors in the meantime? These may have caused your calcium level to increase. Are you taking Calcichew/Vit.D3 to strengthen your bones? I am just clutching at straws here…

I cannot believe how irresponsible the original doctor was in saying what he did - I would have been suicidal! I’m sure also, this has put your husband under a lot of stress

Hopefully someone else will come along who has had similar liver/calcium problems to you with the benefit of their experience. My experience here has been there is always someone either with the answer to a query or can point the poster in the right direction to do research.

Take care,
Liz.

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mel, wot a roller coaster!! . I do think that diagnosing liver secondaries is sometimes confusing and wrong, i know 3 people that have been told that they have liver secondaries which have later turned out not to be. One was given 8 months to live - 6 years ago and she is still alive and well. Lets pray you are one of this lucky? people and have kicked cancer into touch. Emotionally it must be so draining and time consuming? i don,t know and hope i am never in that position. But you GO GIRL, you now have a future to look forward to.Are you still having any sort of treatments ?All the very best xx

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Hi Mel
Just wanted to say I am so pleased for your fantastic news.

Also wanted to tell you about a Friend’s dad who was admitted to hospital with seizures had an xray and when he had a heart attack later that night family was told he had lung cancer and brain tumour, due to seeing fluid behind his eyes…they were advised that only the adrenalin was keeping his heart going and to let him go with dignity when his heart stopped again. anyway to cut a long story short they insisted on evidence of the diagnosis first, took him for a scan, no brain tumour, no lung cancer, was all simply due to low sodium in body. Spent 4 weeks in intensive care being tested for everything going, found no evidence of anything, did manage to give him MRSA and C Diff while he was in, but 2 and a half years down the line he is still fine. Just shows how wrong they can be.

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Wow mel your story is amazing - imbelievable - i will keep my fingers crossed for you that this works out as it looks it might.

Just to share with you - my father was diagmosed with luing cancer in 2005, pet scans and CT scans confirmed it, he had half his lung taken out and the mass was fully biopsied- result- NO CANCER!!! Unbelievable he was sure he was finished.

Cathy

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Thank you everyone. I is good in a strange way that others have had some similar experiences.
I have just had chemo no: 5 good old taxotere is just kicking in.

I spoke to several more people today and like me are in shock and relief. I have also discussed this with my GP who is fantastic and he is also making sure that they
keep on top of things!

everyone I spoke to agreed that you could not get better evidence than that of the biopsy.

I cannot believe also what is happening.

Thamks again and I will let you all know what happens next.

Oh on another good note, miy life policy has just apid my mortgage off!!! Ooops
I spoke to my mortgage adviser and they said that as they are concerned they are going fron the oncs report and they are 100%
sure that they will not ask for the money back! As they said miracles do happen

I pray for many more not for me but for every single person on this site and more.

Hugs
Mel
xx

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Mel - that’s good news - one less thing to worry about for you.

Good luck

Love and hugs
Liz xx

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My god mel what a flipping story !!! I am so pleased for you a bloody miracle …I read your story in horror ,disbelief and awe xx
Good luck to you xxxxxx
Maz

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Oh Mel, what a terrible, terrible experience you’ve gone through. I am truly shocked. Though I shouldn’t be as my father in law went through a similar thing the other Christmas. He began coughing up blood and was referred for a chest X Ray and scan. This was followed by a visit to the consultant who told him he had lung cancer and arranged another scan and appointment after Christmas. Chemo would follow, he was told. My father in law spent a truly horrendous Christmas and became a broken man. After his next scan he was then told … ‘It’s good news, you’ve NOT got lung cancer just a bad chest infection!’. How dare they make mistakes like that? Putting people through weeks of fear. It makes me so very, very angry when I hear of stories like this.

love
Sue

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Hi Mel

I am so glad that it was good news in the end. But so so stressful.

I can sympathise as I went through similar. Dx in Feb 08. Mastectomy March 08. Then supposed to have further op on 10/4. In meantime Ultrasound of liver, chest x ray ane bone scan. Told nothing to worry about as early cancer. Then op cancelled at one hours notice!! Ultrasound showed something suspicious on livery. CT scan was needed. Told CT scan of liver was clear. Told bone scan was clear by BCN. Then surgeon said but we need MRI of bones!!!

Then had lymph nodes taken out on 10/5. Saw Registrar on 27/5 who said lesions on liver. I am having 4 FEC & 4 tax. Really dont know what to make out of it all.

One minute I am told liver and bones clear the next not ?!

Trouble is every time you go you see different people.

Take care and hope all goes well for you.