Hi all,
well its been a long time since I’ve posted anything here, I used to be on everday!! Anyway, for those that don’t know me I was dx with bc in March '07 age 34. I had a right mastectomy and total anc followed by chemo and rads. My tumour was grade 3 stage 3 and I had 25/28 nodes involved. As my tumour was hormone receptive I was put on Zoladex and Tamoxifen. I had the Zoladex for 2 years and now I’m just on Tamoxifen. I did have 3 Herceptin as I’m HER2+ but this had to be stopped as I developed severe heart failure.
Anyway, now I’ll get to the point!!! Back in Oct I had a check up with my surgeon and he found a lump on my neck on the opp side to my surgery. He was concerned so arranged for me to have an U/S. This was quite inconclusive but it did show that a second lump had appeared! A biopsy was out of the question at that time as I was just recovering after having an ICD fitted to my heart following a cardiac arrest. Instead my surgeon opted for a full body ct and referred me to an ENT cons for a second opinion.
I’m aware I’m waffling a bit now so I’ll try and get to the point!! I saw my onc a week ago who said my ct scan could not be read properly as the areas they needed to look at were obscured by my ICD! Then I saw the ENT cons yesterday who said he wanted me to have an urgent fine needle aspiration, which I am having on thurs. He said that I may still need a biopsy if this FNA doesn’t show anything, but that would be a last resort as that procedure could cause problems due to my poorly heart.
So, now I’m worried!!! I was quite calm before, but now I’m not to be honest! My prognosis was considered poor from the outset, as my tumour was v.large and I had nearly all of my lymph nodes affected. The fact that I’m HER2+ but unable to have herceptin doesn’t help matters either. I’m very concerned that on thurs (or whenever I get the results of the fna) I am going to be told that the cancer is back. I honestly don’t know what I’d do if that were the case!
Help!!! If anyone has been through similar or can help me out in any way I’d really appreciate it.
hi kelly
I dont know if you remember me i was diagnosed in june 2007 i had grade 3 idc, 2/12, her 2 + and we spoke quite a bit on the forums! like you i have not been on the forums for a long time as i was sailing along nicely until december 09 when i was diagnosed with liver secondrys i was been treated for an infection with antibiotics until they decided to do an ultrasound, i am now back on chemo and herceptin, i also had a ct scan which showed 3 glands in my neck and they were classed as insignificant, since my scan another larger lump has appeared in my neck i am going back to the oncologist next week to have it investigated, it doesnt really feel lke a prominant lump but more of a mass near my collarbone , doesnt hurt to touch but aches when i have pressed and poked, my doctor yesterday did say we all have enlaged glands and lumps in the neck that just come up and down!! i finished herceptin 6 months ago i am her 2 + , i hope it is all ok for you
galen xx
Sorry to read about the worries you have at the moment, please do call the helpline for further support and to talk through your concerns on 0808 800 6000, open weekdays 9-5 and Saturday 9-2.
hi Kelly, I too have a lump on the opposite side of my surgery, my surgeon found it when he was doing my second op last june and thats him just deciding now that I need an ultrasound on it as it is on one of my lymph glands on my neck, Ill let you know how I get on
thank you so much for your prompt replies, they are very much appreciated.
Galen I absolutely remember you as we were going through treatment around the same time. I am sorry to hear of your recent secondaries diagnosis as I imagine that like me you were finally starting to feel ‘normal’ again and as you say ‘sailing along nicely’. Bl**dy typical and I am gutted for you, I really hope the chemo gets rid of the bu**ers and you are being well looked after. I have everything crossed for your appt with the onc next week too. I will be thinking of you and be sure to let me know how you get on.
Carol thanks so much for sharing your experience with me. We can hold each others hands as we wait for results and stuff! I really hope you don’t have to wait long for your ultrasound. Be sure to let me know how you get on, I have everything crossed for you.
Lucy - Having used the helpline MANY times in the past I have no doubt I will be using it again in the next day or 2, thanks for reminding me of the number.
Hi Kelly,
Realy sorry to hear that you now have these new worries, i remember you also as was DX july 07 and was going through treatment at the same time . I am sorry that i cant offer any help or advise ,but just wanted to let you know that i am thinking of you and will be keeping everything crossed for you.
All the very best
Lindiloo x
Off to the hosp in an hour. Not sure if I’ll be getting my results today or not. Last time I had an fna on a lump on my chest and I only had to wait for an hour before I got the results! Was bricking it then and again now! That time it was just a fatty lump so here’s hoping!!
Hi Kelly,
Yours is indeed a name I recognise from the past :). I am so sorry to hear you are having problems again. You have had a rough ride haven’t you. I am also her2+ but because I have secondaries this is my 7th year on herceptin. The first indication that my ca. was back was lumps around my collarbone and neck and they struggled to get any info from fna and were not happy to do biopsies because if where my lumps were (i.e. too near arteries etc.) They did manage one at my jaw line just below the ear but that was inconclusive - it also triggered a bad bout of sciatica in my leg which I thought was due to the length of time and pressure on my neck etc while they tried to do the biopsy. That rang alarm bells and a whole load of scans which showed I had extensive bone mets!! But this was all 8 years ago and the disease is pretty well managed. It is only the last year or so that pain has become a problem.
I hope today you have got a bit further and know a bit more. If the cancer is back you will cope - we just do don’t we. Hopefully with the lumps it is an early warning and it hasn’t managed to get any further. It is a shame about the herceptin/heart problems.
I will be looking out for your post to see how you got on today and hope you won’t have to wait about too long to know a bit more.
We went through chemo etc about thw same time so I remeber all your posts well. I only drop in occassionally now. Just wanted to say that i am thinking of you and hoping for you.
Hi Kelly I just want to say that I too remember you well.We just missed meeting up a few times.I hope things went well on Thursday and you are able to let us know.I remember how worried you were last year when you had to have scans-you must be so worried.
Love Valxx