why no further tests after lymph involvement?

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I can’t get rid of this b in my bonnet, I’m like a dog with a bone! I would like to know for sure that I am getting the best possible testing and am not conviced that I am.

I was diagnosed in Oct 06 with BC. Grade 2, 3.6 cm, oestrogen +, lymph node involvement. Have had mastectomy, chemo, rads, now on Arimidex and Bonefos.

Reading threads on this site I have seen that many of you out there are offered further tests if you have lymph node involvement, the reason being that it could have spread before diagnosis.

When I first asked my onc why this wasn’t the case for me he said that they wait for signs such as a lump or pain, which we have to report! That along with regular 3 mthly checkups when they feel my collar bones, breast and liver area is all I have been offered. I did get a bone scan 6 mths ago after much complaining about shoulder pain which was clear.

This wk I had a dif doc and I asked her why as a patient with lymph node involment I hadn’t been offered futher tests, she said that this is standard national practice. Clearly not going by what I read on here and I told her that, she was surprised! Secondly, she said that early detection of secondaries is pointless as the outcome is the same. And yet I have read on here how Biophosphates prescribed after early detection have vastly improved the patients prognosis, not cured, I realise that can’t happen, but improved, lengthened life.

I know there is an argument for just getting on with our lives and not dwelling on the what ifs, but I feel that I cannot have any peace of mind knowing that my BC could have spread and I have to just accept that. The doc did say that in America you are usually given further tests and followed this by saying but thats because the patients pays!

I personally feel it is a money thing, but she wouldn’t agree though by then she had more or less said as much with the America comment!

I would appreciate any thoughts on this issue. Could you say if you have lymph node involvement where you automatically given further tests?

Irene

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Hi Irene, I can only tell of my own experience which was that on diagnosis I had liver ultrasound, bone scan and chest xray. However my tumour was 5cm so maybe if you have a tumour over a certain size the protocol is different. I know of others with much smaller tumours with a few nodes involved who weren’t given such extensive tests. I’m in Scotland, don’t know if that affects anything. x

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I also had bone scan, liver scan, chest x-ray and mri (although some of this may have been duplication because i switched hospitals)… anyway, looks like it isn’t a national thing…

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Hi Irene,

I had extensive lymph node involvement and prior to starting chemo I was sent for a CT scan of my chest and abdomen. I was told this was to check for further spread so they could adjust my planned chemo if necessary to cater for this. I also had a bone scan too. Both showed NED, although I do accept that these tests are not always conclusive.

Thats it for me as fas as I know. My bc nurse tells me that they won’t scan me know unless I present with any symptoms of secondaries!

Take care,

Kelly
-x-

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Hi Irene,

Mine v similar to Kelly -had extensive node involvement on diagnosis (14/25) and had MRI, ultra sound, chest x ray and bone scan…since then have been worried about pain in ribs and have had another x ray and ultra sound which were fortunatly alright. As far as i know they don’t scan again now unless any symptoms…

x

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Hello,

Just to add to the previous comments, I was diagnosed 4 years ago, 2 cm tumour stage 2 with 6/17 node involvement. Had WLE, chemo and rads now on Tamoxifen. Had private treatment all the way through and have had no other tests than mamogramm after treatment finished. Have asked my Onc the same question why no scans and he says unless there are signs, ie pain etc they would not test for anything else. My surgeon said the same and by a lot of the posts re this topic lots of us are told the same thing. I was concerned to begin with but I have accepted that this can be the norm.

Hope that helps a bit

Hazel

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Can be the norm but trust me, there are massive discrepencies with who gets what nationally! See, told you I am like a dog with a bone.

It’s not that I want a load of extra tests if it is conclusive that they are not neccessary but its the some do, some don’t that bothers me.

Irene

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Hi
Just to add. I live in Northern Ireland. I was diagnosed in June. I had grade 3, Her+, 23mm lump with 24/37 lymph nodes.
I was given an ultrasound of chest and abdomen. CT scan and bone scan.
I know that a girl who was diagnosed at same time and had no lymph involvement did not get CT scan.

I have been a bit concerned when I ask about future checks and been told that only if I show syptoms. My argument is, there were no syptoms before this diagnosis apart from lump so how can I trust my body to tell me again if I am ill.

MuddyXX

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I had chest x ray and liver ultrasound just after diagnosis. At Diagnosis I was stage 1 I had a bone scan after my operation when it was discovered I was 2b. I had 2 nodes involved. So far all clear.

I had hoped that when I got my 4 monthly checks after chemo finished, that it would be more than a prod about with their hands.

I would like to have ultrasound/bone scan in 6/8 months. I would be tempted to pay privately for this. Most commonly secondaries happen in the bones. Surely the sooner it is caught, the less invasive the treatment or the better the prognosis.

Whilst I don’t thing anybody should fork out for these out their own pocket, I would be tempted to ask the consultants/oncologists what they would suggest to their wives.

Jules

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Hi All

Jules - I understand what you are saying and I think along similar lines. Whilst I don’t think it is right to pay, I may end up doing this at some point - perhaps a 5 year treat!

As I had invasive lobular BC with extensive lymph node involvement - 15 with cancer I think I should be offered a further scan at some point. However, I know this is not standard treatment in Glasgow. I had a liver ultrasound, bone scan and chest x-ray just after being diagnosed. I now only get basic checks - breast area, neck and sometimes,depending on who I see, my stomach. I would, of course, like to have other scans but have been told by my oncologist that they don’t scan unless the patient presents symptoms. I would very much like to have a scan say every 2 years but this is just not an option on the NHS.

Regards.

Jeannie

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I have posted this for new user Debra

Louise, Moderator
BCC

Hi Irene/All

Literally just registered to this site and wanted to add my 2 pence worth!

I was diagnosed 29th Aug with grade 1, my nhs consultant (in west sussex) said nothing to worry about prognosis good, then my private health care kicked in and I had every test under the sun inc ct, bone, bloods etc. Had mastectomy with sample lymph nodes on 12th Sept (still quite sore!) and so far lymph nodes all clear. However, ct scan showed two very large ovarian cysts which I’m booked in for surgery for on Oct 30th - one looks ok but the other looks a bit dodgy - not had any symptoms and this would have passed had I not had the ct scan. Got to wait for results - should know mid-nov.

My recommendation to you Irene is to plead with your consultant - if no joy you have every right to a second opinion. If still no luck, check out prices for private test - it would be well worth the peace of mind and semi-return to normality.

Let us know if you get any joy.

Best of luck
Debs
x

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Hi All,

I was diagnosed in August - and had been misdiagnosed for over 2 years, once they recognised the lumps (one post mastectomy was 4.5 other 2.cm grade 3) through biopsy I had a barrage of tests on the NHS including a PET scan. Have since had mastectomy and lymphnodes removed. Thanks for comments re insisting on having treatment/tests, one of my ovaries was lit up in the PETscan and have been told it is ‘only a cyst’ - will be asking for further investigation.

I also experienced a huge gap between private and NHS in terms of appropriate care. After the misdiagnosis got a second opinion privately who said he would have removed my lump immediately over 2 years ago… Although now NHS seems ok (apart from ignoring this ovarian cyst) - getting biphosphonate drip for 2 bony mets - and arimidex and zoladex for v succesful response to hormones, radio starting but feel as tho I should be having chemo???

I think that we have an issue in terms of accepting reassurance (everything is ok…) to thinking like if this was your loved one would you be reassuring them or making sure they get checked out…

Sorry if I have rambled on…

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I’m putting this to bed now. Had a long chat last night with my friend who is recovering from a mast and recon after a 3rd reoccurance picked up by touch on her routine 6 mthly follow up from an earlier case of BC.

We agree as we both have the same med team that we can’t do anymore than we have done, asking all relavent members of the team and all give the same answer. I simply can’t afford to go private and in fact I object to having to anyway, it goes against my principles.

Dwelling on this is adding to my already depressed state and I am even thinking about not coming on here for a while. If I don’t hear contradictions in care, I won’t know what I am missing and therefore be alot happier, I hope!

Irene

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Dear Irene

With the best will in the world, we try to help each other. Sometimes the information we receive puts more doubt in our minds. You do what you think is right for you and don’t allow yourself to think you are not getting the best possible treatment.

I was four years misdiagnosed and have asked many questions. I have found campaigning helpful. Campaigning for changes in the system has helped my mental state. It has been a helpful and positive way for me to release my anger and hopefully, others will benefit from my misfortune. My symptoms of swelling, thickening and armpit lumps are now in the Scottish Referral Guidelines, which should be of help to others. I also have a petition running at the moment petitions.pm.gov.uk/JeannieBC/. I want women under 50 to get better recognition.

I only get a mammogram every two years. Some on this site get mammogrammed yearly. I asked my oncologist about this. He said every two years was about right. Too many mammograms are bad for you. Who do I believe? I do not think anyone should have to pay for treatment. What about the people who cannot afford to do this? It’s a very ugly thought to think if you get cancer you cannot afford to have the best possible treatment Incidentally, I heard Gordon Brown saying on breakfast television that we are to think of the NHS as our own Personal Health Service (yes, I can well imagine some of you are thinking “what planet is he on”). I also read in a newspaper that he is bringing the breast screening age down from 50 to 47. It’s a step in the right direction.

I wish you well and hope that you get the best possible treatment. As we all do.

Regards.

Jeannie

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Hi Jeannie - have just signed your petition - how can it be that women cannot be referred?
Is it that we are not being listened to …voice clearly needs to be more forthright and louder, has to be a good end result, many thanks for devising this petition.

I too will maybe get more involved in campaigning once thro treatment.

Irene - agree too re importance of NHS which is very helpful hopefully, but clearly we need to be vigilant about being aware of and monitoring treatment?

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Hi Alison

Firstly, I wish our profiles were available - you would be able to see more about what happened to me.

GPs hold the power to refer on for specialist investigation. If they don’t think you have symptoms of breast cancer and you are under 50 they are quite within their rights to refuse you further investigation even if you ask for it. They can, of course, refuse you even if you are over 50. However, if you are over 50 you have the back-up of the 3 yearly screening service which you do not have if under 50. I was told I had nothing to worry about on three occasions over a four year period when in fact I had. I am still fighting with the complaints system which is very fraught. However, I have ruffled a few feathers and will continue to do so. I am a member of a few campaign groups and do feel I am getting my voice heard with some of them. Did you lodge a complaint about your misdiagnosis?

Thank you for signing my Petition. I’ve already told Breast Cancer Care about it and I will be making other organisations aware of it.

I hope your treatment goes well.

Regards.

Jeannie

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I was dx Jan 2003 - 2 cm idc with associated DCIS. I had lumpectomy and sample node removal (no sentinel biopsy done then) 3/8 +, so back for total axillary removal. 1 more node +, so chemo mentioned for first time. Before starting chemo, I had a chest x-ray, bone and liver scan. All okay. However, some 2 yrs later I had severe left hip pain which prevented me sleeping. Saw GP, he sent me to a community hospital (not the breast care centre of excellence where my bc is treated) for an x-ray of my hip. Said it was clear. Then 3 months of weekly physio, which did not help. Then,shortly afterwards, I had my annual review with bc surgeon (2 yrly mammos also here) and mentioned the hip pain. Within 2 days I had a bone scan which showed osteoarthritis of both hips, hands and feet. Prescribed bisphosphonate alendronic acid and Calcichew/Vit.D. I was relieved it was not bone mets. I am on Arimidex, which does not protect the bones as tamoxifen does, and having been on steroids for some 30+ yrs, surgeon was concerned enough about my bones he then ordered a DEXA bone density scan (different from a normal bone scan) and this showed significant thinning since my previous DEXA scan 3 yrs ago, which was done because I have Crohn’s.

As my bc tumour was not palpable and found on a 3 yrly mammo, I am concerned that if I get a recurrence, and it is also non palpable, how will I know? I rang the Nuffield in Plymouth to ask how much a private mammo is, and they said as I had had bc, I would need an ultrasound as well. Cost? £450!! I was shocked, as my friends in Northampton pay £85 for an annual private mammo, althought not at a Nuffield hospital. My surgeon also says that an annual mammogram is risky, giving one too much radiation. How come then, that we have five and a half weeks of daily radiotherapy, which I would assume gives us more rx than an annual mammo? He had no asnwer to that question, just shrugged. My husband believes it is nothing to do with rx, but everything to do with resources, and I guess I agree.

I am concerned that my lymph node involvement may have been avoided if we got annual mammos. I had 2 previous 3 yrly mammos on the NHS and was clear. Friends in the US must have annual mammos for them to continue with their private medical insurance. When I mentioned this to my bc surgeon, he replied as above: “Americans can have whatever tests they want, as they have to pay for them (or the ins. co. does).” It is not good enough. I am not an immigrant or indigent, started work at 14 yrs and continued with no break for children,until I was 40, when we retired to Spain, so I think I paid enough in NHI contributions to warrant the best treatment possible.

Off my soap box now, so good to be able to vent this anger at our NHS system to people who understand where I am coming from.

Liz.

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Hi Liz

I bet you were relieved when you got the results of your bone pain.

I’m sure your hubby is right and resources have a lot to do with it. If mammography is bad for you how come many other countries + some areas of the UK are being mammogrammed yearly? My bc was also not palpable + lobular is often not picked up with mammography. Next time I see my oncologist I’m going to ask for a MRI scan instead. Think I know his answer…

In light of my medical negligence at GP level I would always go to my hospital with any symptoms that I thought could be related to my BC.

Wishing you well.

Regards.

Jeannie

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Just to add to the comments re who gets what scans - I am being treated in Leicester and I had a chest x-ray on dx but that is all. I was told that further scans etc are only done if I present with symptoms. I have also been told that earlier diagnosis of secondaries does not lead to a better result

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I can’t help thinking the earlier secondaries are caught, the better the result!
After all isn’t the “sooner the better” caught theory what they are spending October promoting?

Not everyone gets secondaries, so I am thinking they don’t want to give the majority scans when it is not the majority that will need them. It is a drain on their recourses. In the same way, if ladies caught BC in the 1cm no node involvement stage, that would be a lesser drain on resources. So I think it is a question of funds.

I was diagnosed in Spain in Feb. When the doc sent me for mammo + ultrasound it cost me 160 euros (=£100). it just goes to show how much profit Nuffield are making at £450.

I still feel I will pay for an MRI for my peace of mind if I can’t badger my onc into further scans. Maybe, we should fake some symptoms to get extra scans etc, but it seems immoral to be so unscrupulous.

However, I will not allow a single twinge go by undocumented, if that is the way it has to be, so maybe will get scans just to get rid of me.

Jules