mets to supraclavicle node

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Hi,

 

I think i’m about to join you ladies on this thread.

 

Im about to go and have a CT scan (results will not be given to me until the 27th feb) and just cant stop worrying or crying, and i thought i was a strong person - how wrong was i.

 

I was first dianosed june 2010, TNBC with 3/19 positive nodes. mx, chemo and rads… then 4 years NED. (even discharged from oncologist, thought i was one of the lucky ones)

 

Skip forward to Sept 22 2014 and i found a swollen lymph node in my neck… PANIC… straight down the doctors, then up to the hospital. FNA confirms is cancer… 

 

I then get to see my first oncologist - she says they can confirm is a carinoma (SP) but cant confirm is bc… will need to send off sample to a specialist pathologist, but first they need to operate to get a larger sample… cant remove the node because of where it is.

 

2 weeks after op (total of 3 weeks since i saw her first) im back at the oncologist. She confirms is BC… plan of action is for two rounds of xeloda, further ct scan  and if any reduction then radiation. 

 

6 weeks later, am back at the hospital - no scan, just follow up (and treatment for infection from operation)… I get a different oncologist - He seems to just tut and sigh tho the appt sayng this should have been done etc etc… he then asked for an for an urgent ct scan, biopsy on a further lymph node he can feel under my collarbone this time (which the other oncologist said was due to infection) but he is adamant will be cancer. 

 

Scan done and i get appt for radiation planning. At the planning the oncologist comes in, checks my scan, tells me my cancer is ‘treatable’ and disapears… radiation therapy organsed and commences… I am taking another course of xeloda together with radiation… Finish just before xmas - how hard was that treatment, i couldnt walk, eat (given milk shakes) talk… all i could do was lie in bed with my husband taking me to the toilet… it has taken me a good 5 weeks to recover… 

 

My oncologist rang me just after the ct planning and stated that the ct scan shows NO trace of any cancer anywhere… and that the radiation was just a precaution… im so relieved… 

 

Radiation complete and im back for my appt with oncologist… and its a different doctor… This doctor gives me a totally different story - wants me back on xeloda, says i will be on it for the rest of my life, says because the cancer was in my supraclavile node it will spread, even discussed giving me pain killers during end of life… OUCH… how has this happened??? - He then goes and changes his mind, refuses to give me another course of xeloda as ‘he doesnt know if there is anything to treat’, and orders an urgent CT scan… I am naturally upset but he refuses to answer any of my questions directly, other than tell me that he will refer to the cancer team meetings that they have on wednesday and that when i return on the 27th february i will see another oncologist who will explain what happens next…

 

I havent been able to stop crying/worrying since this appt… 

 

Has anyone else been in this situation, anyone offer any advice… 

 

 

 

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Hi Orse and welcome to the BCC forums

I am sorry to read what a difficult and worrying time you are having, whilst you await replies here please call our helpliners to talk this through, lines are open today until 5pm, weekdays 9-5 and Saturdays 10-2 on 0808 800 6000 and they will help and support you

Take care
Lucy BCC

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Hello, Orse, all I can say is good grief - they have really run you ragged - talk about a farce! Sounds like you might be attending Helen’s “Fawlty Towers” hospital! I 've heard of changing your mind, but that’s ridiculous! I do so hope you finally get some good news, and they find they have got it all wrong, but if you have to join us on the Secondaries boards there are lots of ladies who will give excellent advice and be very supportive. All good wishes, Barton.x

 

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What a shambles!  No wonder you’re upset.  My TNBC recurred in this area, just a few months after finishing FEC T.  I went straight onto Gemcitabine & Carboplatin which wasn’t very successful and unfortunately then spread to nodes underarm on the good side BUT, no such dithering - my doc always had a clear plan for me!

 After 2 chemos failed she suggested getting a second opinion in London which I did with a Professor who specialises in TNBC - he had some excellent advice and put me forward for a trial (unsuccessful for me but others were getting good results.). I saw Prof Tutt privately but you can ask your once to refer you on NHS - seems like your docs may welcome his advice!!

Good luck xx

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Hi…

Thanks all for replying… Ct scan done, now just the long wait until the results day… 27th feb seems so long to wait.

Glad to know I’m not the only one who thinks this is a farce… Problem is when it literally is ‘your life in their hands’ it’s gets very frightening and u need to have confidence in their ability. I’m based in Stafford, but have never yet had a prob with the Hosp until now!

I got a feeling I will be having a frank discussion with my 4th oncologist!

Teej - which Hosp is your Prof. based? Depending on what happens on the 27th, it maybe a good idea to ask for a referral, will pay if need too… Thanks

Can I ask if Cape/xeloda is normally used for reoccurrences in lymph nodes? Or is it just onc preferred choice… I haven’t thought/researched any chemos yet…

Thanks for your support, I have been abit silly and used Dr Google (having got no answers from the real docs) and have frightened myself silly with the stats that I have found about TNBC… Have two young boys and desperately want to see them grow into young men…

My best wishes and thoughts are with everyone…

Corinne…

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Hi Steph - thanks so much for replying… I think it’s the not knowing and the different opinions I’m getting from my onc that is absolutely driving me crazy… I just need to know and with the half term cuming up I worry about how to cope with two very energetic boys, when I just wanna wallow!!!

I am so pls for you that your scan was clear, and onc was not concerned and positive…, what a great response with your skin mets… I’m hoping that it was the Cape that got rid of my lymph node and like the one onc said the rads where a precaution…

what I would give for a positive oncologist tho, can I share yours!?!?!!

Here’s hoping your scans stay clear…

Wishing you the best.
Corinne

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why on earth can you not see the same onc all the time ,I think that would be a whole lot better than all this uncertainty xxx

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Georgie… It wud b so much easier… The oncologists wrk two different Hosp… - Stafford and wolverhampton… The first onc said she didn’t want to travel anymore, the second has gone of long term sick and the third looked like he had just graduated from med school… And keep on tellin me he had just stood in to help out… I got slightly annoyed with him!! Waste of time… And causing loads of distress!!!

Corinne xx

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Hi Orse, sorry to hear about the major problems you’ve been having. Just wanted to echo what everyone else has said to you. Waiting for results is excrutiating isnt it? no one can realy understand unless you’ve been there. I was dx  with skin mets in July (athough i noticed something was wrong in January and was told by 4 medical professionals it was sebaceous cysts) and have been on docetaxol and capecitabine, which isdue to end next week. I am awaiting a pet scan and like you am terrified. Easy to say and hard to do but please try and stay strong (if only i could take my own advice!!). Sending cyber hugs. x

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Hi Orse, I have been diagnosed with my 4th Triple Negative BC which was found in a node in my right side. This is the side I ahd Lumpectomy and complete node clearance in 2002. Then in 2013 double mastectomy and the surgeon went back in to check for lympathic invasion. I was having a sharp pain and went back for a ultrasound which founs one node (that no-one knew I had). It was 5cms of grade 3, TN BC again. I only finished chemo for the third time on Feb 20th 2014. The surgeon has said I can no longer be cured, despit my CT and bone scans all being clear; the results f which I just got last Friday.

 

I’m now waiting to see my Onc to find out what he wants for me, but I’m very reluctant to ahve chemo for a 4th time. Good luck with your results Orse, I will be thinking of you xx

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Hi Bernadette,

Can’t bel you have had this ‘thing’ come back 4 times, sounds like you have had a really bad time…
And I can’t understand why your surgeon says it can’t be cured… Ok he may not be able to get it all via surgery and his part is over but surely chemo and radiation have a chance to kill it all if just confined to one area? (Regional recurrence?) I get this impression but I could be wrong, have been told mine is inoperable because of where it is so no surgery to remove, but I do hold out hope that rads & chemo will keep it at bay and still a curable condition… I may be deluding myself :frowning:

When is your appt with onc they may be more positive… (Better than mine with any luck!!)…
I’m there Friday, and don’t mine saying I’ve been a nervous wreck most of this week…

Corinne

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Hi Bernadette and Corrine, I thought I’d add my experiences, sorry I can’t remember all your case histories, downside of this forum!
I have had 20 years of treatment now with a long NED of 14 years. So 3 tumours in R breast, mastectomy, CMF chemo, radio and tamoxifen in 1995. Axillary tumour same side 2009, surgery x2, EC chemo, radio and AI, in 2011 further 3 tumours in same area, surgery and new AI, 2013 2 more tumours in same area, was going to have more radical surgery then CT scan showed hilar lymph node on chest wall same side was enlarged, suddenly no surgery but Capecitabine chemo which I have been on for 18 months and has made hilar tumour disappear and axillary lumps remain stable.

I was told that I was incurable but I still see myself with a loco-regional recurrence! I don’t think that it makes a huge difference to my treatment, surgery and radiotherapy after so much already is virtually impossible for me so hormone therapy(ER+) and chemo is what’s left. Ive also had 3 hormone therapies over the last 20 years.

I feel sad that one little lymph node seems to make a difference to a prognoses but in my case I’ve already had a LOT of treatment. Even if you are TN there still seems to be lots of options. Wishing you well xx

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Hi Bernadette, you’ve had lots of treatment too, perhaps we should all start our own “nodes” thread!! I was tested for BRCA 1 & 2, I don’t have this but a 75% chance of genetic fault as my Mum and Grandma both had BC. Wishing you the best of luck for your next appointments xx

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Hi ladies

Bernadette, sorry I assumed that as the surgeon said it was incurable that he hadn’t managed to remove all off it… Seems strange… My surgeon said that I would have mets other than just in the node because of it being in the supraclavicle (left side above collarbone)… Told me how they would (hopefully) be able to ‘control’ it for some years, sent me in to see the bcn for a long chat (never seen her since, and have heard nothing from their dept either)… I hope your bcn gets back to you soon, I hate the waiting… Thinking of u…

How do you get tested for BRCA? I did ask for a test at my primary diagnoses but they refused… I thought that TNBC always got tested as high proportion carry the gene…

Stillhere - love the idea of a ‘nodes’ thread… When I was diagnosed couldn’t find anything on just node mets…

Corinne … xx

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Bernadette, sounds like you are NED and they’re just watching and waiting.  Don’t know why your onc said that - mine’s much more “glass half full” fortunately!  

 

My neighbour was told “incurable” about her ovarian cancer but had nearly six years of good health, worry and regular scans before a recurrence in 2 lymphs which seems to have been successfully dealt with by surgery.

 

Orse my onc suggested BRCA testing as TN and under 50 when first diagnosed, GP had to refer me for it so you could just ask GP I guess.  

 

Tracey

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Hi Corinne,
Just wanted to wish you good luck for tomorrow, I’ll be thinking of you and sending you lots of positive thoughts
‘Nodes’ thread is a great idea!
Steph xx

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Good morning!

Thank you for your good wishes…

I’ve got a serious case of scanxiety!! Every part of my body has decided it’s gonna hurt, but mainly round my neck and fossa!! Here’s hoping its tension or simply down to radiation!! (May just b my imagination - lol)

Bernette - I hope your bcn gets back to you today, otherwise you will have to go through the weekend without an appt… Least when you have a date you have something to aim for… X’d fingers for you…

Corinne xx

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Hi,

Results in!! Ct scan still clear on all major organs, they did however find another enlarged node. This one is in my chest and is currently 1.3 cm… Onc said he wasn’t concerned about this node at all - clinicalljy insignificant were his words… Prop is when you have had cancer everything becomes significant!!! Onc thinks it could be due to radiation or lymphodema - which I have in my arm and chest!!
He doesn’t want to see me again for another 4 months.
However, he is again an temp oncologist, called back from retirement to help out with staff shortages… He was a nice man tho, and I did have confidence in him and how he was explaining things… I’m just scared of waiting 4mths incase swollen lymph node is due to bc!!!
Anyone one else had this situ where they had a chest node enlarged and onc wasn’t worried??
C xxx

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Hi Corinne from one of the Node gang! I’d be really happy with your scan results, spread to organs has got to be worse news than to nodes surely? Well done, hope you are having a few treats to celebrate.
I’m seen at the Marsden and they did take my hilar lymph node enlargement seriously, it was 2.5cms when first discovered. I think it’s a bad idea to compare though as there are so many variables, think this node is very close to the main branch of your lung?? If you are concerned you can always ask for a second opinion xx

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Stillhere - I am really happy with scan results, only thing that would have been better would have been totally clear… But I count myself lucky…

I’ve treated the kids and myself to a pizza!! There was a time when I would have gone out for a lovely meal with a couple of bottles of wine… Joys of parenthood!! ! Wouldn’t change it tho…? and I’ve spoken to my boss, back at work on Thursday, bring some normality into my life…

I think will have to play the waiting game now, as many ladies on here do… Consultant didn’t seem too concerned…

Corinne xx