just a a quick update, I have now started on Capetibabine, after high intensive radiotherapy to my mediastinal area and right eye which has left me absolutely shattered. Eating has been a nightmare for me, and have loss 2 stone in this very short period of time. I also had laser therapy on my right eye, which had a recurrence after radiotherapy at Christmas. Due to start my 2 cycle of Capetibabine on Tuesday of next week, with a trip toMoorfield to check my eyes. I'm finally gong to have a MRI scan on 13 June, which my Onc told me 2 weeks ago wasn't necessar but the dates arrived in the post, so I'm going come what may as I feel that the node in my neck wasn't really taken seriously, and the ones in my mediastinal area were even mentioned to me until I need chemo. That then took 2weeks to get up and running, as I was too poorly to swallow anything, especially oral chemo.
I am am able to take some food on board now without being permanently sick and chocking. I feel I have hidden myself away, so that people can't see me and have begun to feel quite isolated. I know that my family are feeling stressed and I want to make them feel more comfortable around me too.
sorry to be a bit late coming to your thread. I wondered how you were all getting on, especially Pippie. Do you have a PALS (Patient Advice and Liaison Service) in your hospital - I think many of them do have. You might find it helps to go and have a chat with them - ask if it would be right for you to request a 2nd opinion. They will tell you the best way to proceed with the problems you are having with your onc. At the start of my 2ndary dx back in 2002 (maybe a bit before that even) I started to get a lot of swollen nodes around my collarbone and down the sides of my neck. I had other symptoms too - Horner's syndrome which affected one of my eyes where the pupil does not dilate at the same rate as the opposite eye. I also had started to have my vocal cords affected and sounded quite hoarse at times. My onc didn't seem too concerned about these symptoms but hey I was under the Royal Marsden and trusted them. When the lymph nodes just under my jaw near the ears started getting bigger as well they tried to do a biopsy with ultrasound but just weren't able to get a hold on it! I was put on chemo and the nodes all responded well but when I finished the course they came back again. It is hard to remember the sequence of things now but I know I developed pretty severe sciatica after hopping up and down on a stool moving things around. I suspected something wasn't right and I think my onc did too when I called them. They had me in very quickly for a bone scan and found I had very extensive disease in my bones. Often a lot of lymph node activity can indicate things are going on which is why I think you need to press for that 2nd opinion and get things checked out. There is no way your lymph nodes are enlarging due to an infection etc. not with the other symptoms you have. Pippie I hope I haven't been mixing you up with one of the other ladies posting here - as I can't get back into the rest of the posts here to check. I just think you need to know for your own peace of mind what is going on and I think PALS might be the way forward for you.
Sending love & hugs
ive just been diagnosed with secondary BC in my neck, I found a small lump and I was given an ultrasound and they took a biopsy straight away, although they did say it is very difficult to get a biopsy from neck lumps as they are in such an awkward place. I was told if they didn't get enough to determine what was going on they would operate under a general to get enough. Fortunately I didn't have to have that and last Thursday it was confirmed as secondary BC. I am now waiting for a CT scan to determine if and how far it has spread. My oncologist says there are lots of treatments to try, treign to remain calm and positive but it's all such a shock. I really think you need a second opinion as if you have a neck lump,you need to know what is going on and get a treatment plan in place. Insist!!! Xxx
I know, having the worry is stressful enough in itself let alone having to deal with the bureaucracy ( had to google the spelling ) You have my entire empathy for what you're going through. The one shining light for me is my onc secretary who has been a godsend and shoved a rocket somewhere when I was casually told I'd have to wait 5 weeks for a CT scan after already waiting 3!
Get on the phone tomorrow for answers.
If you want to vent you carry on.
love and hugs
Thank you for your speedy response.
My lump only turned up in pea size in November but has been getting bigger as time goes on. I had radiation on my left eye at Christmas, and was redial noises in my right with left eye recurrence 2 weeks ago. I had laser surgery at Moorfields last week, and they checked my lump and said it had legs, why had it not been biopsied. The following day, at my local hospital for ENT they spent a long time examining it and asked the same question, I said all was ok cos onc told me it was SBC but they aren't so sure and want it check as effecting vocal chords.
Went to see about being put on oral chemo yesterday, really wasn't well, was put with a registrar who kept insisting I had to start yesterday regardless and could not have a biopsy because if infection. Asked to spk to my onc who was too busy, husband refused to allow me to take the chemo home and asked for another week to get me fitter for it.
Now I'm booked for biopsy through ENT, and seeing onc afterwards on the same date and have no clue what side is up. Someone was to phone to day to let me know what would be happening and I've heard nothing.
This is really beginning to stress me out, isn't this what we are supposed to be avoiding.
Thanks ffor listening
Thank you so much. No hair loss but I'm ultra sensitive to the sun............................ St Tropez will have to wait 🙂
I'll let you know how I get on.
I noticed mine a couple of years ago and to be honest I'm glad I did as it seems its been caught early. There were 2 or 3 small lumps just above the collar bone. I was given a scan and was told they were non cancerous but they would keep an eye on them. During a check up Oct/Nov time they said they had got bigger so I had a fine needle biopsy which was inconclusive. I then had a further biopsy and CT scan. The second biopsy wasn't as pleasant and the lump got bigger as a result. My onc is hopeful and says it shouldn't take long to find out if the new drugs are working.
I think because I found them and it was caught early I've not had any other effect as you describe. Have you asked your onc why he's against a biopsy? I know its scarey and the wait is very worrying but I would rather know though I must admit I wanted to run away and hide 🙂 It's your body, your choice and your decision unless your onc has a very good reason not to have the biopsy I think I would go ahead.
I do wish you all the very best, you must be so worried.
Big hugs to you xxx
I'm so sorry to hear this. Please do keep an eye on them and don't be fobbed off. I had a left side masectomy follwed by fec-t in 2010. Was on Tamoxifen for 3 years and then on to exemestane. I found lumps in my neck 2 1/2 years ago and scans showed everything was OK but I've just recently been diagnosed with secondary cancer in my lymph nodes in my neck, although I am told this is rare. I've been accepted on to the Furva trial and just had my second cycle.
I don't mean to cause you extra worry but just a note of caution to be aware and to insist that they are monitored.
I do wish you well for your chemo, I'm sure you'll get through this.Big hugs to you xxx
Welcome to the forum but I am sorry you are going through this worrying time. I am sure users will be along soon to share their experiences and offer some support.
If you would like to talk about the lumps you have found please do call our helpline at 0808 800 6000 who will be able to help answer any questions you may have and offer a friendly ear. The opening hours are below.
Late opening Monday and Wednesday 5pm-7pm,