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Awaiting breast surgeon referral among other referrals...

Breast cancer biomarker

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18 replies to this topic

#1 Amanda Thorpe

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Posted 10 May 2012 - 04:25 PM

Hello All

So I am awaiting appointments for a gastroscopy, colonoscopy and ultrasound because of worsening digestive issues. I have lost my appetite since July last year and obviously lost weight and become anemic. Unfortunately the first general practitioner I saw did nothing other than prescribe 10 nutrition drinks, at the time I was not up to being my own advocate so just decided that I would raise the issue when at the Royal Free next, at that time my appointment wasn't far off.

A scleroderma patient that presents with worsening gastrointestinal issues should be treated with urgency, at the very least the general practitioner should have ordered a blood test to check for anemia which I turned out to have when tested at the Royal Free. Needless to say they wrote to the general practitioner ordering the tests I am now awaiting, unfortunately I got to the Royal Free much later than I had anticipated when I was first dismissed by the general practitioner which means that whatever the cause of the lack of appetite has had more time to worsen. I put a written complaint into the surgery nearly a week ago and have not had even an acknowledgement of it let alone a reply, needless to say I'll be escalating it for sure.

Anyway coming back to the point of this post, I am awaiting referral to a breast surgeon. The Royal Free requested a mammogram because of the raised bio marker, Ca 3-15, which can indicate breast cancer. Although I do not have the hereditary risk factor,age factor or any symptoms, I do have the raised bio marker, scleroderma (can increase the risk of cancers such as breast cancer) and have been on and off immunosuppressants for 5 years and both mycophenolate and methotrexate can raise the possibility of cancer.

When first seeing a general practitioner about this I had to fight my corner as he was somewhat dismissive about the possibility of breast cancer, he explained why a **mammogram would not be helpful at my age which I accepted and he said he would write to a breast surgeon to see what they suggested as an alternative, I can't have a MRI (have a pacemaker/defibrillator) instead though.

So now I await a phone call to arrange the appointment to see the breast surgeon and let me tell you when I get there I will not be dismissed. I you think about it no one would ever have said I would end up with scleroderma, no one would ever have said I would end up with myocardial fibrosis and heart failure. No one would ever have said I would have been retired at 40 because of ill health, no one would ever have said I would be trying to buy an electric wheelchair, unable to go out and about on my own. No one is going to wave away my concerns on the basis that it's unlikely I have or will have breast cancer or any type of cancer.

Needless to say it could all amount to nothing (let's hope so!) but having fought scleroderma for 5 years I am not going to be taken out of the game by anything else and most certainly not because a doctor thought cancer unlikely and therefore dismissed a potential threat. On that note, there is an article in the recent papers about how a doctor died of breast cancer, initially dismissed because of her age then misdiagnosed etc, I have the article and will be taking it with me.

Take care.

**The general practitioner explained that at my age a mammogram could show up what appear to be lumps resulting in endless biopsies that reveal nothing so another test/investigation may be more productive.
Amanda Thorpe
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#2 judyt

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Posted 10 May 2012 - 08:42 PM

Oh Amanda!!
If it is not one thing it is another. Well you go girl and don't let them put you off.

Once upon a time I had a little sister, she was born on the night of my 8th birthday so I always thought of her as my gift. Then when she got to your age or younger she started getting cancers!! No real reason why, no family history, no other risk factors. She was even a Vegetarian and they say that lowers your risk.

Anyway first it was a lumpy thyroid which was partially removed, then a very aggressive breast cancer which had to be treated more than once, then ovarian cancer which finally carried her off at 47. Why her?? Why you?? Who knows. Just don't let them quote statistics and likelihoods because there always has to be the one who is outside the norm.

My thoughts are with you. Kia Kaha - be strong.

Judyt

#3 miocean

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Posted 10 May 2012 - 10:09 PM

Oh Amanda,
I feel your pain. See my post.

Does anybody want to help write a book? We could call it "How We Fell Prey To The Medical Machine and How It Killed Us."

Sending thoughts across the ocean...

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#4 miocean

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Posted 11 May 2012 - 12:53 AM

Amanda,
Years ago I had a questionable area on my right breast show up in a mammogram. I went to the first breast surgeon who did a sonogram on the left breast and said I don't see anything. I told her she examined the wrong breast. She wanted to do a lumpectomy (like I'd let her cut on me??) The second breast surgeon also wanted to do a lumpectomy but I was very reluctant. I have a great deal of respect for this doctor because he sent me to another center that had a steriotatic biopsy done with needles; I had that procedure done and I have cystic breasts. Today, the doctor who referred me is the head of the breast center at his hospital.

A friend of mine in her 30's found a lump and insisted on a mammogram, found a suspicious area that turned out to cancer, had the cancer gene. Went through a total mastectomy and reconstruction all under charity care. She had a beautiful body before all this and a beautiful soul, and after all she went through you would never know. She got married and had 2 kids, originally thinking she might not be able to have kids because of all the chemical treatments.

I hope you get the tests you need and end up with all positive results. It just saddens me we have to fight so hard, just to get answers and what's right for us.

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#5 Sandy B

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Posted 11 May 2012 - 03:21 AM

Hi Amanda,

Don't take any ifs, buts or maybes when you finally get to see the breast surgeon. Make sure you get what you want out of the appointment, further investigations and answers. All too often we are fobbed off.

Example, when I saw my gastric consultant in December 2010 and mentioned I had been having difficulty swallowing since the beginning of the year and it was slowly getting worse and I could only get food down if I swallowed copious amounts of water, he was quite happy to dismiss me. Quote from his report says, ` As a recent upper endoscopy was quite good, I am disinclined to investigate at this stage................overall she seems reasonably well' (the recent endoscopy was in fact 10 months earlier) Four months after this appointment, in April 2011 I was finally diagnosed with Barrett's Oesophagus which was cancerous, after suffering to the point where I could barely swallow anything and was being sick alot of the time.

I think the moral is better to be safe than sorry. Since surgery last year I have been having continuous lung problems and difficulty breathing and I have had to chase up doctors and appointments. Luckily everything is in hand now and is slowly being sorted. Scans have revealed my stomach and oesophagus are not emptying so I am having that sorted on 12th June. Plus I am having a more detailed scan of the lungs the end of May.

I hope your appointment goes well Amanda and I hope more importantly that the Doctors listen to your concerns and take you seriously. Surely it makes more sense to carry out the necessary tests and examinations now rather than wait until later.

Good Luck

Sandy B

#6 Joelf

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Posted 11 May 2012 - 08:00 AM

Oh Amanda, it's such a shame you've got yet another serious worry hanging over you! I'm so sorry and as usual you're being incredibly brave.

It doesn't sound as if your general practitioner is very supportive or on the ball and it's one thing to be very assertive when you're feeling okay and able to cope but it's less easy when you're worried, feeling ill and fatigued most of the time so I really understand how upset you must be feeling. Please know that I'm very concerned and worried about you and hope that when you have your appointment with the breast surgeon you get satisfactory answers from him and everything turns out to be okay.

My very best wishes to you,

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#7 Sweet

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Posted 11 May 2012 - 11:15 AM

I'll be thinking of you! Hang in there girlie!
Warm and gentle hugs,

Pamela
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#8 Amanda Thorpe

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Posted 11 May 2012 - 03:07 PM

Thank you all for your replies, I just knew you would all get where I was coming from. You start to feel like you're being a hypochondriac don't you?

Miocean, your book title is a winner for sure! We'd have to write it posthumously though which, in itself, poses few problems, think we have difficulty with our hands now?? I'm glad your friend was able to have children.

Judy how awful for you, and I am so sorry it emphasise my very point, you can never rule something out with absolute certainty.

Sandy, your post fires me up for sure and thank you for doing so.

Jo, if you're still coming on the 26th (with hubby) we can have an ironic laugh about it.

Sweet, you've had enough scares yourself over the recent years.

Take care and thank you all again.
Amanda Thorpe
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#9 Joelf

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Posted 11 May 2012 - 11:43 PM

Indeed I am Amanda, I wouldn't miss it for the world!!! :lol:

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#10 debonair susie

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Posted 16 May 2012 - 11:07 AM

Dearest Amanda,

I stand with the other ladies! :emoticon-hug:

We all love you very much and why, oh WHY don't these doctors not get it??!! :emoticon-dont-know:

You are so very much in my thoughts and I am keeping you there and sending positive vibes to you through this time, my friend.
Special Hugs,

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#11 Amanda Thorpe

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Posted 16 May 2012 - 03:56 PM

Susie, thank you so much. I am pleased to say I have my appointment with the symptomatic breast clinic next week, can't wait to get the ladies out :lol: so they can be squished and squashed :lol:!!

Take care.
Amanda Thorpe
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#12 Deb1million

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Posted 22 May 2012 - 02:10 PM

Hello Amanda
I have only just seen your post, and am very concerned that you have had this extra worry. You could do without it! I'm sending you all my wishes for good news very soon.
Thinking positively is a lesson you have shown us all.
xxx

#13 Amanda Thorpe

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Posted 24 May 2012 - 10:16 AM

Hello Debbie

Thank you and I hope you and your dear hubby are doing well!

Take care.
Amanda Thorpe
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#14 Amanda Thorpe

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Posted 08 June 2012 - 01:40 PM

Hello All

So I had my mammogram and what a weird experience it is! It's not just the squashing of, er, um, of the ladies but that the radiographer stood behind me, reached over my shoulder and hoiked the other lady out of the way whilst squashing the other! Then she asked me to suck my stomach in! Great, I'm fat! :yes:

The good news is no problems at all!

Take care and thank you all for your support and concern.
Amanda Thorpe
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#15 uknlv18

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Posted 11 June 2012 - 11:50 AM

That is great news Amanda, I had the same issue when I had a lump on one of my breasts and it wouldn't go away. They did an ultra sound and it was inconclusive and I had the same thing, too young and no risk factors. But I did get my mammogram which came back negative but to be sure they took several biopsies and they were negative as well. There is nothing more frustrating then when your doctors dismiss your issues as if they were irrelevant. I would like to have them go through a couple of days of what we go through as they wouldn't make it a whole month! And then see if they say the same things.

As I said I am so happy everything came out negative, it must be a great weight off of your mind. And we have plenty of other things to keep our mind busy we don't need extra stress.

Cheers
Jean

#16 Amanda Thorpe

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Posted 12 June 2012 - 04:18 PM

Thanks Jean! This week I saw the consultant who will be doing my gastroscopy and colonoscopy at the same time and I pointed out the him that me being awake one night (because of the bowel prep) was the equivalent of him being awake for a week! He didn't seem to like it! Also the fact that my pain medication may be somewhat ineffective was not important to them but hey guess what...it is to me!!

Take care.
Amanda Thorpe
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#17 Buttons

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Posted 15 June 2012 - 01:07 PM

Hi Amanda

Just read your post and so glad to hear that the mammogram was ok, it must be a great relief for you.

Buttons

#18 Liz Holloway

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Posted 19 June 2012 - 09:25 AM

Just got back on to the Forum & caught up with how you are getting on. Pretty grim I find but so pleased to hear you got the all clear on the mammogram. No, it's certainly not the most dignified procedure..
Can't believe you are having so much to deal with. Surely no more now... Have got fingers crossed for a good outcome following the next lot of tests.
Liz

#19 Amanda Thorpe

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Posted 19 June 2012 - 12:39 PM

Thanks Liz! It was a strange procedure for sure! Unfortunately things keep getting worse in sclero land, most recently Michael had to take the day off of work because I could not walk, even from bedroom to bathroom (not far as you know) because of pain. How ridiculous.

Take care.
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