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Primary + Secondary Diagnosis = Double Whammy!

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Re: Primary + Secondary Diagnosis = Double Whammy!

Re. tests for diagnosing bone mets right from the start - what tests SHOULD be carried out? Can a medical team go ahead with treatment for bone mets on just results from a CT scan, without carrying out a bone scan too?

 

 

I would like to know what the minimum tests would have to be, at the hospital responsible for my treatment, but I don't know how to check on this.

 

Jen

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Re: Primary + Secondary Diagnosis = Double Whammy!

thanks Jen onc was'nt overly concerned but I am having another ct and bone scan ,she said treatment wouldn't change regarding my herceptin for Liver mets ,but possibly depending on scans may give something for bones the new ones of which the the name escapes me it begins with a 'D' and is an injection ,the sclerotic lesions showed up on ct but not on bone x

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Re: Primary + Secondary Diagnosis = Double Whammy!

Jenanne I have pm'd you. Pamx

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Re: Primary + Secondary Diagnosis = Double Whammy!

Geordiex -
Breast cancer cells in bone can cause bone to break down (osteolytic lesions, or holes, can form) OR cause bone to build up/repair itself (osteoblastic/sclerotic lesions, or denser areas of bone). In metastatic BC in bones, you can get both lytic AND blastic/sclerotic lesions, due to the action of BC tumour cells on the bone. Sclerotic bone shows up on bone scans, but not always - and can be due to other things, like old injuries, aswell as bone mets. A CT scan will show sclerotic lesions too, which could be bone mets or something else. If you have a primary d/g then they will be checking for mets on CT scan - differential d/g based on images seen is crucial to what your BC d/g and treatment will be. Various factors will affect diagnosis of BC bone mets - best for a patient to ask their oncologist/radiologist re. their own d/g - I will be getting all my imaging examined & explained to me at forthcoming meeting!
Useful info: http://www.rad.washington.edu/academics/academic-sections/msk/teaching-materials/online-musculoskele...
http://emedicine.medscape.com/article/387840-overview

Jen.
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Re: Primary + Secondary Diagnosis = Double Whammy!

so could sclerotic on a ct scanmean something else apart from bone mets ,if nothing shows on a bone scan ?x

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Re: Primary + Secondary Diagnosis = Double Whammy!

Dear All - I have a meeting this Friday 23rd. with the Director of Velindre Cancer Centre, Cardiff, and the Professor/Medical Director, plus a consultant radiologist - to discuss the findings from investigation into my case to date, and the responses from each clinical opinion in detail.
Oct. 2009: 'There are spotty, sclerotic areas throughout the thoracic & lumbar spine & also in the pelvis...findings would be consistent with bony metastatic disease'.
Jan. 2013: 'She has multiple small, sclerotic lesions in the spine & pelvis which were identified on CT in Oct.'09, and have not changed significantly in that time. The bone scan is normal. Recent MRI of spine is largely normal. The area of abnormality in femur is fairly indeterminate. We have come to the conclusion that the evidence for bony metastatic disease in this patient is tenuous. The small unchanged sclerotic lesions could well be related to a benign bone dysplasia.
I've outline my concerns to them, the main issue being that I wasn't informed or given opportunityto discuss uncertainty about mets/possible benign condition in Apr. 2011, when they first questioned it. From Nov. '12 I had m/x , 2nd lot of chemo (due to now HER2+, so herceptin needed), rads, change of AI - after 3 yrs. d/g with secondaries.
In recent letter from them they have put some responses from clinicians. It says that the consultant radiologist (who will go through imaging at the meeting) 'has highlighted that your case was not re-discussed at MDT until Oct.2012. Therefore the findings of the bone scan in March '11 & the CT in July '11 were not reviewed by the MDT, despite the concern raised in the reports regarding the diagnosis of bone metastases. She therefore does believe that there was a failure to discuss your case earlier at the MDT and this led to a delay in informing you of the doubt regarding the initial diagnosis'.
Any comments welcome!
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Re: Primary + Secondary Diagnosis = Double Whammy!

Thanks Doodlecat and Lemongrove - I will ask for consultants' reports on Monday and will get meeting recorded.
Doodlecat, yes, you need to have possibility of surgery looked at ASAP.
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Re: Primary + Secondary Diagnosis = Double Whammy!

Lemongrove, I have asked to be referred for a second opinion (after I lost the trust in them). I am awaiting this appointment at the moment. I had read about having the primary removed aids survival. I don't really know why I didn't question it earlier. Thanks for your advice and any more you can give will be most welcome.
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Re: Primary + Secondary Diagnosis = Double Whammy!

Jenanne tell them you wnt the meeting to be recorded. This will allow you to go back over the responses afterwards, and will avoid the subsequent - we didn't say that- scenario.
Doodlecat, when your docs refused to offer you a mastectomy you should have gone elsewhere, because many hospitals do offer this to people with secondary BC (lots of evidence that it aids survival). Debating with them will get you nowhere, because they will just say it''s out clinical opinion, and your opinions are irrelevent because you're are not qualified.

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Re: Primary + Secondary Diagnosis = Double Whammy!

Hi Jen, in that case yes you should ask to see their responses. Makes sense to be able to read what they have said prior to meeting. I see no reason why you would not be able to see this and surely it will make for a better meeting for everyone.
June
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Re: Primary + Secondary Diagnosis = Double Whammy!

Hiya June - hope the Capecitebine improves things a lot. I edited my post as I didn't make it clear that the meeting I mentioned wasn't between my consultants - it will be one where I will be present and will be discussing consultants' views (my onc., radiography onc, surgeon) with the medical professor in charge, also consultant radiographer and the director of the cancer centre. To be able to see my consultants' responses now would probably make for a better discussion, as I can see if they've added/changed anything they have said to me before.
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Re: Primary + Secondary Diagnosis = Double Whammy!

Hi Jen, yes I started Capecitebine on Tuesday. Saw breast surgeon a week ago and he agreed no improvement on the lump which is now a whole breast. Tumour markers up again so he recommended change and locum onc agreed. She opened the consultation with 'you are the woman with the famous boobies everyone's been talking about'. She was a breath of fresh air. Not good I only got a few months out of Letrozole but at least they are now trying chemo to see how that goes. I have been referred for second opinion - still think it would be useful fir my file to be independantly looked at.

I don't see any harm in you asking for that information prior to the meeting. If they are saying that the concerns you raise are complex would it be relevant for you to be present at the meeting - or for you to have a face to face meeting to discuss their findings? Either way I hope you receive answers to all your points.

Take care.

June
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Re: Primary + Secondary Diagnosis = Double Whammy!

Doodlecat - hope your future treatment have been sorted out properly now?
I have a meeting arranged for 28th August re. my concerns over bone mets/not diagnosis. I had a letter recently, from the chief exec. of the hospital, saying that the contents of my complaint letter have been shared with the consultants involved, who have provided information to the director of the cancer centre re. the points I've raised.
The letter stated that 'the concerns you raise about your clinical diagnosis and care are complex' so will be 'discussed in detail' and I will be provided with 'a full explanation'.
I think I should ask for the information from consultants to be given to me now, before I meet later with professor, etc. at my complaints meeting?
Jen.
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Re: Primary + Secondary Diagnosis = Double Whammy!

Hi Sarah. Hope you don't mind but clicked on wrong thread and saw your news. GREAT news on being in remission, I'm sure this will be long term. FANTASTIC!
Angela x
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Re: Primary + Secondary Diagnosis = Double Whammy!

jenanne, my primary was diagnosed from examination, mammogram and ultrasound, needle bopsies were done on the primary and lymph nodes and while results of those were awaited I had CT scan, isotope bone scan and MRI which confirmed there were also bone and liver mets. All this took place in the space of 3 weeks between my first breast clinic appointment and meeting my oncologist for the first time.
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Re: Primary + Secondary Diagnosis = Double Whammy!

I have asked for a second opinion. I just want an oncologist to actually look at my file. I have been told this will cause delays in my treatment. This is not acceptable. Seeing the breast surgeon this Friday. He has confirmed that oncology is short staffed. My breast is seriiously no longer a breast just a solid mis-shappen, hard lump.
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Re: Primary + Secondary Diagnosis = Double Whammy!

Doodlecat, have you got your chemo, etc. sorted out now?
Thanks to you and finty for replies. I was (mis) diagnosed with bone mets from the initial CT scan - I wonder whether I should have had more tests done to confirm it/not at that time. I will ask about this when I go to the 'complaints' meeting.
Jen.
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Re: Primary + Secondary Diagnosis = Double Whammy!

I had a bone and CT scan after my WLE after so many nodes were found to be cancerous.

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Re: Primary + Secondary Diagnosis = Double Whammy!

I was diagnosed with primary breast cancer and then around a week later was sent for pre op and mri. A few days after that I had CT scan and ultrasound (internally) in my womb as I had a lot of bleeding also. Diagnosed with multiple bone mets, cervical mass and spread to one ovary. Mx cancelled as no longer 'curative'.

If you need more accurate timescales I can get back to you later. I am popping out just now.
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Re: Primary + Secondary Diagnosis = Double Whammy!

Ladies who were diagnosed with primary breast cancer, then waited for results of a CT scan and were then diagnosed with bone mets: were other tests carried out straightaway? I want to compare the procedure I had with what other women had.
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Re: Primary + Secondary Diagnosis = Double Whammy!

Jenanne you raise a very good point about aggressive treatment of isolated bone mets - or any other mets for that matter. I had to fight a little to get this - but am very glad I did as I'm still here 4 years on doing really well. Those with minimal mets are classified as having oligometastases, and there is research that shows if treated aggressively the outcome is significantly better than the standard NHS wait and see approach. Interestingly the MD Andersen Centre in Texas, which has the best cancer survival rates in the world, takes this more aggressive approach - they also promote an integrated approach including diet and lifestyle issues - they are light years ahead of us.

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Re: Primary + Secondary Diagnosis = Double Whammy!

The advocate from the community health council (CHC) - in England it is PALS - contacted me today and thinks, like me,that the hospital feels an investigation is warranted as they will have the professor/medical director there. I need to go through my list of concerns regarding probable bone mets misdiagnosis, so that everything is clear.
Most of all I would like my hospital to look at the whole question of whether surgery should be offered to women with small or isolated bone mets and, as in my case, when there's uncertainty over bone mets d/g. I have read other posts on here from ladies who were given surgery. Because I didn't have an early m/x, and the breast tumour came back, the cancer mutated to HER2+.
Jen.
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Re: Primary + Secondary Diagnosis = Double Whammy!

Dear All, advice/ideas needed and welcomed!

I had a 'phone call today from the director of the cancer centre regarding my apparent diagnosis with bone mets - which turn out to be very probably not mets. I thought I'd best post on this thread as I've discussed it here before and had good advice.
The director proposed a meeting soon to go through my concerns - with herself, my oncologist, a radiologist and the professor of BC at the centre.
She also said my surgeon could be present, but I said no - only because past feelings cropped up! After my m/x I asked the surgeon why my onc. left it so long to refer me for the m/x and he said words to the effect of 'well, he's not to blame really, he's done his best'.
What I'm trying to say is that the thought of both the onc. and the surgeon being there made me feel anxious, because I imagined them sticking up for each other and coming out with things like 'we did the right thing' and questions not being thoroughly addressed.
I am glad this professor will be there as he hasn't been involved with my treatment (so a kind of 2nd opinion?). Also glad of chance to ask the radiologist about what's gone on re. d/g of bone mets and to be able to actually see/have explained my scans, x-rays.
I felt vulnerable again as soon as the director rang me about this meeting - 'big cheeses' and me! I will be taking a community health council advocate with me, but want to make sure this meeting will clarify everything.
Jen
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Re: Primary + Secondary Diagnosis = Double Whammy!

I was dx with double wammy in may 2009.I had had pain in my armpit for years but had had clear mammos so told nothing to worry about .I had excruciating back pain starting Feb 2009 and spent a fortune on physio,which was not really giving me any relief so decided to go to gp.I mentioned to him about the pain in my armpit getting worse and a slight sweeling as well as the back pain.He referred me to breast clinic and I was totally floored.I had a mammo and an ultrasound but nothing really showed up so they did a biopsy...and then a agonising weeks wait for the results. When cancer was confirmed I was sent for bone and ct scan...seems I had exstensive bone mets in spine,ribs,pelvis and femur, a local occurence in the lymph nodes BUT NO PRIMARY.They know it was breast cancer because of the hormone tests and they think it was a tumour so small to be undetectable on scans. I was totally distraut at the time but over the last 4 years have come to terms with the dx and manage to live a "normal life" around treatments and hospital appointments.

L xx

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SP0
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Re: Primary + Secondary Diagnosis = Double Whammy!

It's a useful link, jenanne, thank you. mrsblue, you're right, we're all out in the open, posting on this site.
Sarah
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Re: Primary + Secondary Diagnosis = Double Whammy!

Hi Jen. Thanks for the link it has helped to give a better understanding of my treatment and the part my immune system plays in the process. I have been doing various things before I started chemo and while on chemo to help boast my immune system and so far so good especicially my last treatment I have felt quite well so I hope I can continue this way. Thanks again for the link. Angela
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Re: Primary + Secondary Diagnosis = Double Whammy!

Elliedog (Angela) - I hope this link will be useful, to explain how chemotherapy can kill off most/all cancer cells, how any left die off, and others are destroyed by the immune system.
http://www.cancerresearchuk.org/cancer-help/about-cancer/what-is-cancer/grow/cancers-sometimes-come-...
Jen.
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Re: Primary + Secondary Diagnosis = Double Whammy!

Thanks for starting this thread. Just over a year ago I had my double whammy. I walked into clinic expecting one thing and came out with quite another. Nobody can imagine the shock. You really do need a lot of time to get your head around it all. I had a large primary (IDC) in the left breast (originally misdiagnosed by my GP) and mets in liver and bones. I have multiple liver mets, I don't think they were ever counted and some are large 25mm+. When I asked the prognosis was 'more than weeks' so I am (gratefully) surprised to still be here especially as this is not my only cancer diagnosis, I also have a rare and incurable blood cancer to complicate things.
I started immediately on 6 cycles of Taxotere with Herceptin. That finished in September and scans showed a moderate response. Since then I have continued on Herceptin and Zometa and remained fairly well. Latest scans showed the liver mets have continued to improve but there has been progression in the breast so I have just started radiotherapy to try to control that. My oncologist assures me there are plenty more treatment options and that he will treat this as a chronic disease. It is a roller coaster of a ride but it is good to find you are not alone and there are some wonderfully knowledgeable and supportive ladies here who will help you along.
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Re: Primary + Secondary Diagnosis = Double Whammy!

Hi Sarah. Just caught your post. I can understand what you mean about the confusion. I had a R breast mx which took the tumour away but then was quickly dx with secondary in the liver. I am on chemo at the moment( 4 more to go). If the chemo does its job and sorts the liver out does that mean I no longer have cancer in me. If it does its job I will be on Pertuzumab and Herceptin (as long as they work) for ever and scans. Or does this mean my body will always produce cancer cells. All I know is that as long as the drugs are working I will continue to take them. Hope your feeling well. Angela
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Re: Primary + Secondary Diagnosis = Double Whammy!

Hi Abbie and all you great ladies
I was also diagnoised in February. A heck of a shock.
I have not had chemo yet, I feel that it is to come one day in the future the far future I hope. After my lumpectomy and aixill they found during scan that I had hot spots in the bones hence the double whammy. I have not had anyn biopsies on the hot spots. I am on letrozole and exegeva
I just feel the less people know the more normal my life can be for now. A couple of good friends plus hubby know and they are such wonderful support . Chatting on here really helps to there is somuch help and comfort to be found amongst the ladies here.
Thanks for the warning Mrs Blue about privacy.
Take care everyone
Mara
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Re: Primary + Secondary Diagnosis = Double Whammy!

I had double whammy practically straight away. Found lobular cancer from routine mammogram which had spread to my lymph nodes and went in for R Mx with temporary skin saver implant and L reduction because I was going to have DIEP reconstruction once chemo etc finished. I also had a lesion under my R breast which they told me was a skin cancer and they would get rid of it at the same time.

When I returned for my post op results they told me that the analyses of all the tissue had shown lobular BC also in the L breast (despite having MRI which showed L breast clear ) and some cells in the lesion also had breast cancer.....so it had spread to surrounding skin.
Had CT scan which showed mets in upper spine and pelvis....and also some infiltration into peritoneal area.
I was in shock, never had a lump, thickening or anything. They then said that I should have a a reconstruction with an implant, but I didn't want that. They said they couldn't use my own tissue from my abdomen because it had been compromised. I wanted bilateral MX at this stage but the surgeon wasn't happy about cutting into area which may have cancer, he was concerned that skin cancer might erupt.
i sent onto LETROZOLE and after 3 months my tumour markers had reduced 'dramatically' they reconsidered and I have had a bilateral Mx about 10 weeks ago. No reconstruction.
Anyway after another 3 months my tumour markers were down again and so I then had a CT scan.....about 6 months after the first one. They have told me that there has been no further spread, the bone mets are either smaller or the same and that the peritoneal infiltration has -"almost completely resolved"-
the double whammy was devastating at the time but hopefully it is not the early death sentence that I was fearing at the time.
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Re: Primary + Secondary Diagnosis = Double Whammy!

Some of you have mentioned wanting to keep your diagnosis private.... I don't want to add to anyone's problems but (if I understand correctly) every part of this forum (except PMs) is open for anyone to read, whether they are logged in or not.
BCC has not given us, who have secondaries, a private section where we can discuss our concerns, hopes, anguish etc. without alarming those who "only" have primary bc.
Someone please tell me that there is a private section for those of us with secondaries only, and that because of my chemo brain I have forgotten about it or am unable to find it...
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Re: Primary + Secondary Diagnosis = Double Whammy!

Hi Abbie,
I've had a lumpectomy now (following chemo), but without lymph node clearance, as my surgeon didn't see a benefit for me. So it's herceptin + tamoxifen ongoing for me now too, with ongoing CT scans to keep any eye should any new tumours pop up. I find this position very confusing to be in - I have secondary cancer but potentially have no remaining tumours for now....
Sarah
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Re: Primary + Secondary Diagnosis = Double Whammy!

Hi Mara, I know exactly what you mean about keeping things private, only my husband & 3 close family know of my secondary bone met diagnosis which is what I wanted when I was diagnosed in Feb. Because I have now finished chemo, am in no pain from my bone met and look really well (when I have my makeup and wig on!) I have to cope with comments about how well I am doing, and questions about my treatment plan. I know I will have to tell people the full story at some point but at the moment my treatment is going well and once I have my surgery next month and radiotherapy, I am planning on returning to work. I am on herceptin but will also be starting tamoxifen soon. Have you had chemo as well ? Abbie
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Re: Primary + Secondary Diagnosis = Double Whammy!

Whoops pressed the wrong button lol.
i was going to say that the things are a little better now not sure why but I am coping. That is unil I meet up with supposely well meaning people asking me vey personnel questions. I am trying to stay private at the moment. That's why chatting on these boards really helps.

thanks Sarah for starting us off on this discussion
Mara
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Re: Primary + Secondary Diagnosis = Double Whammy!

Hi Abbie

We are on the same timeline . . After my lumpectomy an aixill clearance. I am exegeva shots and letrozole. I m still. In shock after receiving the Double whammy
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Re: Primary + Secondary Diagnosis = Double Whammy!

Hi mrsblue. Sorry haven't posted seem to be getting mixed up with the different threads I have been on (blame my chemo brain). When I was signed up for the trials it was my surgeon that put me forward to my clinical trials onc. Boths consultants were very positive at the time and my onc even used the word cure. So at the time I had no reason to believe there was any spread. However as time has gone on I do wonder if they surgeon used his many years of experience to manuover me in the right direction. Without going on the trials I would probably not of been scanned until after chemo which by that time would of been the wrong treatment. Also the Pertuzumab that I have with Herceptin and doxotaxal was the drug I would of trialed as a primary dx so I already know alot about it. So part of me if grateful that if this is the case he found a way around the system and things were found so early to give me a fighting chance. If not then I still benefit because they found things early. They say they want to keep a close eye on me and they are very excited about the benifits of the Pertuzumab. So that is where I am , not sure how I got here but here I am, and if a wise surgeon tried to help me then I am grateful. If you have any questions please post me or message me and I hope I have answered your question without going on to much. Take care. Angela xxx
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Re: Primary + Secondary Diagnosis = Double Whammy!

Hi Lemongrove, thanks for your response. I'm not criticising the legal stuff but as I'm just diagnosed I don't know what much of it means so get lost in all the jargon. I have managed to get a couple of contacts through this though and wish you well with all your battles.
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Re: Primary + Secondary Diagnosis = Double Whammy!

Sarah, thank you for starting this thread. I was diagnosed in Feb this year with both primary and secondary cancer (bone mets) and have been reading threads on this site since then then but find our situation unusual and haven't felt comfortable posting. The bone met caused my first symptoms, lower back pain which resulted in severe muscle spasms. I had immediate radiotherapy to my back followed by chemo (taxotere) plus herceptin. Also on zometa. Oncologist very pleased with response with last scan showing met now healing and shrinkage of breast lump. Have just been told that surgeon is keen to operate to remove breast tumour and armpit lymph nodes which I am pleased about. It would be good to continue to share our experiences on this thread. Abbie
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Re: Primary + Secondary Diagnosis = Double Whammy!

Sarah, thanks for starting this thread - for me it has been VERY helpful. I wasn't sure of which was the 'right' thread for talking about this, but I have been able to find support here for my own experience with 'the double whammy' and hope my experience has given others some extra insight/useful info.
Jeannie51, I will PM you when I hear back from the hospital - I have written formal complaint letter to post on Monday.

Jen
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Re: Primary + Secondary Diagnosis = Double Whammy!

Hello Katherine2701

You're not alone, you'll see a post from Angela (elliedog) above and a couple of others earlier in the thread. There are more too, you'll find some people commenting on the liver & bone mets thread. I often join the secondaries live chat on a Tues night and you're welcome to message me.

Hang in there.
Sarah
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Re: Primary + Secondary Diagnosis = Double Whammy!

It would be good if legal help/misdiagnosed discussions could also take place under their own thread - if a thread is the same thing as a heading. Ladies asked for this at least 5 years ago but it was never granted. I won't be saying anything further on the legal side but hope what I have said is helpful to anyone else thinking of travelling this route.
Wishing you all well.

Jeannie51

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Re: Primary + Secondary Diagnosis = Double Whammy!

Hi Angela (elliedog)
Your post raises some interesting issues. No need to answer by posting a reply on this public forum, but I do wonder how you felt about having signed up for the clinical trial, gone for additional scans, and the single liver met was found... I myself am very positive about the importance of clinical trials, though the two drug trials I participated in didn't benefit me at all.
It was the surgeon who would have done my WLE who sent me for scans including the nuclear medicine bone scan.... I think he suspected secondaries then.
I have had excellent monitoring during the almost 7 years since dx.
Just wondering, what chemo are you on now?
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Re: Primary + Secondary Diagnosis = Double Whammy!

Hi Katherine2701, I have already posted on this thread and have found this site extremely helpful and comforting. I was dx with breast cancer to the right breast in feb 2013. Had right breast mx and node clearance. Within weeks dx and because I was entering a trial I had to have all the scans which is when they found the cancer had spread to the liver. They say it is very small (less than 1cm) but non the less it is there. I had no symptons and still don't. I am about to have my second chemo along with Herceptin and Pertuzumab and so far only suffered a bad rash and about 3 days of feeling like I had flu coming. I do have hope because there are plenty of ladies out there that do well and are still doing well. I hope there are many treatments open to me yet but I hope my Pertuzumab and Herceptin work for a long time, fingers crossed. I am still quite new to all this but if there is anything I can help with you can message me. Take care Angela xxx
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Re: Primary + Secondary Diagnosis = Double Whammy!

Katherine2701, I'm really sorry to read about your diagnosis, and hope you can find some help. information and support from this site and this thread. I think the thread has gone slightly off on a tangent, but I guess when discussing the diagnosis of secondary cancer the issue of misdiagnosis and legal matters are going to crop up, because sometimes people have secondary cancer because their primary was missed, or treated inappropriately.
I do though think that the issue of being diagnosed with secondary cancer when the cancer was in fact a primary deserves it's own thread.

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Re: Primary + Secondary Diagnosis = Double Whammy!

Hi there,
This is a message for SP who started the thread. It was great to read youpst ost. On 9th April I was diagnosed with breast cancer with both lung and liver mets. I have had the first two of six FEC T chemo sessions and have been looking for a thread or someone who could give me something to aspire to and who I could identify with. Most other people don't have the massive shock of Stage IV and lung and liver mets. It has shocked me to the core but I am trying to get myself together to fight this and to get through the chemo. I don't know how you would feel about messaging or starting another thread because this thread seems to be all about people who are taking legal action? It would be nice to have someone to swap stories with, although I can see that I wouldn't have as much to offer in advice obviously. Let me know if you would be happy to do that. Many thanks.

Katherine
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Re: Primary + Secondary Diagnosis = Double Whammy!

Dear Jen. You made me smile - I live in constant stress because of my siutation. I feel I need to fight on in order to protect the women that come after me - this is not just for myself. Give yourself a pat in the back that you are doing something about it. You will feel a little better after you have written to the hospital. Hopefully, they will learn from what has happened and be honest with you. Enjoy your week-end. Do keep me posted.

Jeannie

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Re: Primary + Secondary Diagnosis = Double Whammy!

Dear Jeannie, that's all I want - for the hospital to acknowledge mistakes.
I need to address the hospital errors, but put it all in a separate box, because you are right about the battered psychological state! Recent treatment on top of learning about the d/g last October has left me feeling very weak, so I have to make sure that past BC things don't get me down. You mustn't stress yourself either.
Thanks for your help - I will take a look at NICE guidelines.
Jen
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Re: Primary + Secondary Diagnosis = Double Whammy!

Dear Jen. I think you are doing the right thing in mentioning the lack of thoroughness and earlier investigation. I'm sure your psychological state has taken a battering. Correct me if I'm wrong here but this was the side of me that suffered badly. Sometimes it hurts even more than my cancer diagnosis. However, you must try not to over stress yourself. I feel the best outcome for you would be if the hospital acknowledges they made mistakes. Your notes are quite detailed and I feel a medical negligence person would be very interested in your notes of Apr 2012. In my case, they have denied everything which makes it so much more difficult. Keep positive and try not to get swallowed up with it all. Feel free to send me a private message. I feel I have said enough in the open and as I have said before, I have to be very careful what I say particularly on legal matters.

Wishing you lots of strength to fight on.

Jeannie
PS You might like to have a look at the NICE guidelines. If there is anything helpful there that you could quote in your letter so much the better.

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Re: Primary + Secondary Diagnosis = Double Whammy!

Jeannie51, I am going to the CAB (Citizens' Advice) to get information about my position and legal aid, if I decide to go down the legal route. Meanwhile I've got my letter to complete! I'm going to stress, in my formal letter to the hospital, some of the things Lemongrove mentioned - particularly that there should have been more thorough and earlier investigation of bone mets d/g, when mets were first questioned. It will take some time, and I will let you know what happens. Thanks for all your help.
Jen.
P.S. Just a bit more from my medical notes. I had a bone scan before a rad. treatment to hip and a CT scan afterwards (Apr/June 2011). This hip pain now seems to be down to bursitis. Notes say : 'On balance the lack of progression of these small sclerotic foci and a largely normal bone scan would indicate that these are likely to represent benign sclerotic bone islands of the osteopoikilosis type bone dysplasia'.
2nd. rads given to hip & sacrum in Apr. 2012. Notes say: 'Appearances are atypical but probably represent extensive bony metastatic disease although the possibility of multiple bone islands should also be considered'.