secondary cancer in distant lymph nodes

I have been viewing the forum for some time now and have at last plucked up courage to post.

I was originally diagnosed in 1990 aged 39 with a grade 1 tumour in my right breast. Lumpectomy and radiotherapy followed but no mention of tamoxifen or yearly mammograms. There was no attemp to stop my periods.

I remained clear until 2002 when I found a lump in my left armpit which was subsequently found to be a grade 3 ER+, HER++ tumour. At the same time a further recurrence was discovered in my right breast, the pathology of which matched the tumour in the lymph node of my left armpit. The lymph nodes of the right breast were clear. MRI scans failed to reveal a primary in my left breast and so it was concluded that the tumour in my left axilla was a secondary from the right breast. How bizarre is that.

In 2002, I had surgery, the dreaded FEC and was prescibed a course of Femara which I am still taking. Despite its side effects, femara has seemed to be an effective drug for me cancerwise so far. However I recently found a further lump in the left axilla and am awaiting a CT scan to check this out. As the lump is near the site of removal of the previous malignant nymph node, I am hoping it will be scar tissue.

My daughter was 5 when I was originally diagnosed and is now 23. When I was diagnosed originally, I thought I would never see her grow up and then with the secondary cancer diagnosis in 2002, I did not expect to see her graduate. Well I am still here and she completes her degree course next June so fingers crossed.

I wondered if anyone else on the site had the same secondary diagnosis as me.

Hi there, I haven’t had the same diagnosis (have bone mets) but just wanted to say ‘‘hello.’’
Good Luck with the CT scan I hope it is scar tissue too.
Belinda.
x

I haven’t seen anything in your post that suggests secondary breast cancer? A recurrence in breasts or axillary nodes is not secondary breast cancer.

Good luck with your CT scan and hope you never join our club.

Hi Sappho

Have you asked your oncologist whether it’s definitely a secondary or a local or regional recurrence because there is a difference between the two and they are viewed completely differently.

Good luck as well with your scan. I tend to agree with Holeybones that I have never heard of secondaries in breast or axillary node being classed as secondary as it’s normally when it’s spread to liver, lung, bones or brain.

I’d check it out with your health team.

Regards
Pinkdove
x

Would love to be still classified as having primary cancer but oncologist insistent it is secondary cancer as spread is from right breast to lymph nodes in axilla of left breast. I had three MRI scans to try and find primary in left breast but nothing showed up. Oncologist also had detailed discussions with patholgist and cells in grade 3 tumour in right breast exactly matched those in left axilla so they are pretty sure spread came from there. How bizarre is that. I am receipt of DLA under the special rules.

My case is really peculiar and I am starting to wonder if I am a one off.

I would be grateful for advice on waiting times on CT scans. I was told at clinic on 23 November that I would be referred for a CT scan urgently. As nothing had come through the post from the scanning department by today, I phoned them to check what was happening. The clerk told me that they had only received the referral in the post yesterday ie on 4th December and my case was now waiting to be assessed by the Consultant radiologist to assess its urgency prior to them giving me an appointment. This means that I have already waited 12 days prior to it being even looked at and goodness knows what the waiting period is now.

Is this par for the course or do I have grounds for taking it up with someone?

Hi Sappho

Really sorry to hear things are not so good for you right now. I’m replying to the bit about CT scans and waiting times. From the moment I saw my consultant, I had one test/scan after another and never left the breast clinic without details of when my next scans and other tests were going to be and this was followed up by a letter of confirmation. In fact my consultant had even booked some of them for me in order to prevent any delay. I guess each hospital is different but the waiting time is the hardest and I really sympathise with you.

Rebz xx

Hi Sappho,
Sorry you’re having to deal with this, and the unusual nature of it too.
Like Rebz my scans are usually booked on the day I’m at clinic, or they tell me exactly how long it’ll be e.g. ‘about the second week in Jan’ and then I get a letter in the post. I would phone the Onc’s secretary or clinic nurse and just ask for the Onc to be alerted to the delay and they may contact the radiographer and bump you up the list.
All the best for your results, you unique person!
Jacquie

Thanks for your replies. This website is brilliant. I live in Lancashire and it would appear that other parts of the country have a much better scan service than here. My breast care nurse is very supportive and I will contact her to see if she can speed things up.

Had a similar problem in 2002 with my MRI scans. At that stage, the scanner only came to my hospital once a month from Manchester and would you believe that the request was delayed, only reaching the scan department just before the due date, 12 June 2002 by which time the breast imaging scanner was fully booked. I was so distressed at then being given a MRI scan date a month ahead of this that the consultant referred me urgently for to nuclear medicine scan for a MIBI breast scan. Would you believe that the nuclear scanner then broke down due to an electrical storm and I did not get this scan until 5 July 2002. I was in a dreadful state because the lump in my armpit was growing rapidly and yet noone would do surgery or start treatment until I had been properly diagnosed.

I wrote a letter to the chief executive in 2002 and received profuse apologies for the delays but that doesn’t really make up for the emotional pain suffered.

I’d be interested to know why some Trusts are more efficient than others. Do you think this is due to some Trusts having closer relationships between the oncologists and the scanning departments or the hospital preferring a slower system.

Sappho x

I know the scanner centre at my hosp is all paid for out of charity money raised locally through scanner appeal. It’s v good and has a permanent location.
Don’t know if this is true elsewhere?
Jacquie

Hi again Sappho
What you had to go through is awful My hospital seems to be extremely well equipped to deal with all kinds of scans and tests as required. The communication between the breast clinic and the diagnostics department is second to none. The diagnostics department houses the ultrasound machinery, nuclear medicine machinery (for bone scans), CT scanner, mammogram machines, xray machines and MRI machinery. These are all permanent fixtures and are in constant use. Here is the timescale of my referral and diagnosis in case this assists:

Monday 11th June saw GP who referred me urgently to hospital (got call that afternoon with appointment for that Friday)
Friday 15th first appointment with consultant at hospital and had mammogram.
Monday 17th had ultrasound and biopsies and blood tests.
Friday 22nd (a.m.) saw consultant with results of biopsies (which were positive for breast cancer) & Friday (p.m) had bone scan. (Got call from breast care nurse following week to let me know the scan was clear)
Following Tuesday 26th had a special type of biopsy on other breast called stereo core biopsy but passed out during procedure so had to be referred to another hospital and have the procedure done lying down instead of sitting.
Friday 29th had CT scan
Tuesday July 3rd booked in for liver biopsy but ended up being ultrasound scan and liver was clear.
Thursday July 5th another stereo core biopsy at a different hospital with different equipment
Wednesday July 11th first appointment with oncologist and decision to begin treatment following week.
Friday July 13th UCH hospital to see fertility specialist
Monday 16th echo and ECG
Tuesday 17th portacath put in
July 18th first lot of chemo.

When you are going through what you are, there are no excuses for delays like yours. I did get scared that the lumps were growing too so I can completely understand where you are coming from and I wanted to start treatment asap but they needed all the results back first.

So sorry to hear what you are going through.
Rebz x

Thanks Jacquie and Rebz for your replies. I think I’m living in the wrong part of the country. The main hospital in my area now has permanent MRI, CT scan and bone scan machines but referrals seem to have to be sent by post from the consultant to the hospital scanning department which in today’s world of instant computer correspondence seems ridiculous and totally unfair.

I also understand that the medical notes are kept at the main hospital and prior to the clinics, the relevant medical notes are transported by taxi between hospitals, then being wheeled to the clinic receptionists in supermarket trolleys. I have no idea if these files are accompaigned by a member of staff or even sent in a sealed container. It’s no wonder you can never get a trolley at Tesco.

My husband tells me that someone has phoned twice whilst I was out asking to speak to me but would not leave name or telephone number. Dare I hope that this might be the scanning department. It will probably turn out to be some company touting for business. If I don’t hear anything by Monday, I am going to get very cross with someone.

Thanks for your support.

Hi Sappho

It does seem awful what you are going through. As everyone says it appears to be very different in different parts of the country. I am in the Scottish borders and my progression through the various treatments has been so swift that it is only now that I am finding the time to reflect on what has happened. Prior to this I seemed so busy going from one appt to the next that I just didn’t have any time to stop and think!

Have given my timescale as a guide:

30 Oct - saw gp re lump in right breast, who said he would refer me to breast clinic urgently
31 Oct - GP contacted me to tell me appt was 1st Nov !
01 Nov - attended one-stop breast clinic for mammogram, ultrasound and biopsy and it was confirmed that the lump was cancerous. Was given appts for bone, liver and lung scans at this appt
07 Nov - attended for bone scan
08 Nov - attended for liver & lung scan - at this appt also met with BCN who confirmed results of all tests and date for mastectomy/node clearance
15 Nov - had mastectomy & full node clearance
18 Nov - discharged from hosp with full details of appt with onc
21 Nov - appt with onc - results G3, T2 Her2+ tumour
28 Nov - started 4 cycles of FEC - with treatments planned for rads and 4 cycles of Tax

…so as you can see, quite a speedy process. It wasn’t until I got home from my first FEC that I realised that a month hadn’t passed (just) since I went to my GP !!!

Hope you manage to get some results from speaking with your BCN x

Margaret

Thanks for your response, Margaret. What a brilliant set up for breast cancer patients in your area. I can feel another letter to the Chief Executive of my hospital coming on. I am beginning to think that Lancashire is still in the dark Ages.

It is very good here Sappho - there is only one down side (thre had to be really didn’t there?!!) - when I start my radiotherapy - this is the only part of my treatment that my health board don’t undertake locally. Sooooo - I will have to travel to Edinburgh for it. The rads I have been told will take approx 15 - 20 mins (excluding waiting times lol) - the drive to Edinburgh takes 2 1/2 hours !! So i will have to spend 5 hours every day for 4 weeks travelling !!! Not something I am looking forward to!

I know what I will be lobbying my local MP about next !

take care
Margaret

Poor you. That’s an awful lot of travelling. When I had my initial treatment in 1990, there was no local radiotherapy unit here so I had to travel to Christies in Manchester which is about an hour from here. The radiotherapists were very good in arranging the appointments in the middle of the day so I could take my 5 year old daughter to school and collect her in the afternoon. I found I got pretty tired so arranged for friends and relatives to drive me there after the first week.

I remember a really embarassing incident when I decided to fill up with petrol just prior to my appointment. I had borrowed my husband’s car for some reason and his petrol cap could only be opened by the ignition key. Would you believe that I got the key stuck in the cap and so could not close the tank or drive the car off. I rushed to the cash point in floods of tears, saying I can’t get the key out and I have an appointment at Christies in 10 minutes. Fortunately a man in the queue took pity on me and got the key out. I could tell that the queue of drivers stacked up waiting to fill up with petrol were not amused. I stuck to my own car after that.

awww poor you.

My mum was treated at Christies in Manchester in late 990 funnily enough. It was a dreadful time, we lived in Shropshire then so it wasn’t exactly close !

She had bowel cancer, and unfortunately passed away in early 1991.
I’m not going to go into details but if you remember at that time there was some concern around that time about people being given too high a dose of radiotherapy by inexperienced radiographers - enough said!

Things like you and the petrol cap always seem to happen at times like this - no idea why, maybe it’s the brains way of taking our mind off other problems lol

Margaret x

Hi Margaret

Reading your post struck a chord with me. My mum was diagnosed with breast cancer in 1979 and was treated at Christie’s in Manchester and the radiotherapy burned her quite severely (she was only 43) and it makes you realise how far the treatments have come along and improved in that period of time.

Pinkdove
x

Hi Margaret and Sappho

Margaret - I can’t believe the journey you are going to have to undertake - I thought mine was bad. I will be having radiotherapy starting January at a different hospital too. This hospital in rush hour is about an hour’s drive away - nothing in comparison to you but with no traffic is more like 20-25 mins so I’m going to try and get appointments outside of rush hour.

Saphho hope things get better for you. Sounds like your hospital needs to really buck its ideas up and get with it.

Hugs
Rebz xx

Guess what I received in the post this morning? Two letters from different hospitals - one asking me to contact the CT scanning department as soon as I can after receiving the letter to arrange a CT scan at one hospital and the other from another hospital asking for me to contact them to arrange a mammogram as soon as possible. Is the appointments desk for scans open at the weekend - nope, will have to wait until Monday. Aargh but at least I feel I am now making progress.

The CT letter says I have to have a blood test before the scan and the blood form is enclosed. Is the blood form enclosed - no, of course it isn’t. Does anyone know why I have to have a blood test first. I presume this means a trek to the blood clinic as I cannot imagine that the scanning department will do this.

Methinks I’d better fill the car up with petrol as it looks like I’m going to have to make 3 separate journeys. However do people manage without transport.

Thanks for your support ladies, it makes such a difference.

OMG Sappho the hospitals who are dealing with you really need to sort their acts out!
Anyway good that you now have the choice of 2 hospitals or really whichever one offers the first appointment. I’m not sure about the blood tests in relation to the CT scan. I had a blood test as part of the diagnosis process but not when I had the CT scan.

Good luck
Hugs
Rebz