I've read your update on the other thread & I'm sorry to hear you're having a crap time just now. Here's hoping your oncologist has you sorted out in no time. 🐵
Try to remember (easy for me to say!) that your onc has only just started to scratch the surface of available treatments. Like all the ladies have said, if you're ER+ there are a number of hormone treatment combinations to try before chemo is brought in. It's just a case of finding what works for you!
I really wish I was ER+ too...would make this journey so much simpler for me!!
I'm keeping everything crossed for the 3 of us...waiting on scans & tests on our unwanted lumpy bits is soooo stressful...here's to good results for us all!!
Take Care & Good Luck
Hi Kelly & Hayz,
Just been to onc today and had lots of bad news. Listed them in another thread, so won't repeat them here. Glad both of you are having scans to check things out. And I'm afraid to say that I'm joining you on the nail biting wait for scans and scan results.
I'm having both CT + MRI scans to check for further progression due to growth in lumps and period returning.
Shall we hold hands and wish each other for good results?
Let us know how you get on with your scans & u/s...fingers & toes crossed that they're all fine!
They decided that the 2 lumps in my neck are definately Lymph nodes containing cancer (no biopsy as yet due to the location, so I'm having some extra boosters addded on to my rads....I'm still having treatment for my primary!!
After rads finish next Thursday it's a sit tight & wait job! I'll be having another CT scan in 6-8 weeks to see where we stand & if anything else is needed.
My onc has said that I won't have any further treatment unless the lumps grow....or God Forbid....the CT shows further spread!!
just thought I would take a mo to update you all on whats been happening with me and my lumps! Mind you, to be honest there's not a lot to report!! Saw ENT surgeon again and will be having a repeat U/S of the neck lumps in the next few weeks and will then see him again to see if anything has been picked up.
In the meantime I saw my onc today who wants me to have a bone scan as its been a while since I last had one. Last time it showed up some areas for concern on my lumbar spine so no doubt that will give me something else to stress about when I wait for those results!!
I hope you are all doing ok. Good luck and best wishes to all who are
on this journey and esp those who are also waiting on test results and things,
Take care all,
Hi Ann_04, that's interesting. Maybe I should have a BCN after all! Anyway, it's all sorted now. I do have my onc's mobile number, it's just that he's such a busy man that it's a bit difficult to get hold of him. And every little bit of change seems to make me very jumpy at this stage.
Hi Hayz, good to know you've got an app to have it checked now. We all know the waiting is awful. My onc's word "if there's no changes to the lump, then it's more likely to be good." But hey, I thought mine had got bigger, but he didn't agree.
As for the lump on my side, he's not sure what it is!? He said it maybe BC coming back, or maybe lymph node, or could just be a simple infection of some sort. But he's decided not to do any tests at this stage because it's very small in size.
bydand: my scans in March has got postponed because he thinks it's not necessary to do it at this stage!!!! I think I'm going to run out of nails to bite now. Never mind! All the best with your scans in March.
Can I join your thread?
I finished chemo just over 3 weeks ago & started rads last Thursday.
I noticed on Saturday morning that the lymph node just at the collerbone on my infected side was about the size of a grape. I didn't think much of it assuming that it was a side effect of rads...but with the obvious niggle at the back of my mind.
Well I asked the rads girls about it today & the way they looked at each other told me it wasn't a SE. They took me round to the clinic to see my onc who has arranged for me to meet with her & my Breast Surgeon on Weds morning to have a needle stuck in it...her words not mine!
I'm now freaking out & have myself convinced that it's the cancer back already. I'm triple negative, so that's stressing me out even more! I really don't think I'd cope with a secondary diagnosis (altho I know that I would just have to get on with it!)
Sorry for the waffling....but I'm in a bit of a state right now & feel better for posting!
Hope you're all well
m1yu - Just because you are private shouldn't mean you don't have a BCN. My Mum was with BUPA and she had one.
Remember me. Not been o here for a long time and just looking to see if ther's anyone I remember.
Sorry to here you're having problems. I hope life improves.
Glad you got an appointment on Wed at least not too long to wait and your onc's response sounds optamistic.
I know it is difficult but I do hope you can try and relax and enjoy the weekend a bit now you have appointment.
Love Anne xx
Spoke to onc on Fri on the phone and he agreed to give me a quick check up on Wed. But he said he wouldn't worry about it too much.
I'm feeling a bit better already after knowing the appointment is a bit early now. Didn't realize how much this has been troubling me.
"Nail biting" indeed, Anne. I'm not usually like this. I was less anxious when I was dx initially. Don't know what hit me this time round. At least Wed is just around the corner...still feels like forever though.
Kelly - so pleased to see your post. Sorry you ahve had the 'horrid doctor' experience. It is so unnecessary.
I will keep everything crossed and hope it is all 'one of those things' and nothing to worry about. If you get my drift.
Take care - Jacqui
Good idea to mention to nurse on Wed. I was diagnosed with bone secondaries in September and due for scan in March after 6 treatments of Carboplatin (my bc is triple negative). Looks like March will be a nail biting time for both of us! I do hope the Tamoxifen is working for you and you get your neck checked out soon and it is another false alarm we all know how stressful the waiting is.
Lots of love Anne xx
Hi m1yu & all,
you are most welcome to join this thread, although I'm sorry of course that you need to. The worry just never goes away does it?! I really hope your scan shows that the lump on your neck is nothing sinister and will have everything crossed for you.
Take care all and keep in touch,
I'm with private, so don't have a BCN. But will mention it to my nurse on Wed when I get my PICC line cleaned.
I was dx with bone metz with primary and 6 months of chemo has done a pretty good job in keeping it under control. My next scheduled scan in March will be moment of truth for Tamoxifen. If it doesn't work for me, then I have to go back to chemo (terrified of the thought). Just starting to feel a bit more like myself and any sign of it developing further is bad news.
Why don't you contact your breast care nurse. I know there are some brilliant ones out there who might be able to speed up your appointment given your concerns as you say it's a long time to wait.
Welcome to the thread. Waiting on results of anything that is worrying you is stressful. Once you have noticed something or it is pointed out to you your mind runs riot! It is part of what we have all been through.
Please keep posting with any worries you have. We are all here to help one another.
Love and take care
Hope you don't mind me joining this thread.
I too have recently noticed a lump on my neck - well, actually, it was my onc who noticed it at the last check up. But he said it's not big enough to be worried about!!!! However, he added that we'll need to keep a close eye on it.
In the last few days, it seems to have got bigger - could be just my mind playing up. But I've also felt a small lump on my affected side....and this is making me a bit panicky!!!
I'm currently on Tamoxifen (since Dec, 09) and my onc said that because I'm strongly ER+ and PR+, Tamoxifen is very likely to work for me. I'd like to think that's true and all those symptons are just "false alarms" (I had one when I was going through chemo).
My next appointment with him is 10th March, that's almost another month!! So, I'm joining you in the tense wait and try to stay calm in the mean time.
Great to hear from you was a bit worried also, Blooming computers eh can drive you potty sometimes lol.Good to hear that the docs are going to keep a close eye on you over the next few weeks , know what you mean about being fed up of being prodded and poked dont think ive ever got used to it tut. Realy hope everything turns out well for you and please let us know how you get on when you have your date for the ultrasound.
All the best
Great to hear from you. Getting concerned as time went on.
It is hard enough without the doctor being horrible.
Keep us informed how you are doing. The ENT consultant sounds nicer and you do get fed up being prodded and poked. Lovely to see you back again.
Love and take care
I am so so sorry I haven't been able to reply sooner. Had computer issues which (fingers crossed!) are sorted now and also things have been pretty manic and I've not had a moment to myself. Thank you all so much for your kind words and thoughts. I remember so many of you from when we were having treatment around the same time. Can you believe its almost 3 years ago now??!!
Well, I had my FNA, and the doc that did it was horrid and instilled me with no confidence whatosever. To be honest I felt like a total inconvenience! I got my results on monday which were inconclusive. This was expected as the doc doing the FNA said it was only 50/50 that he would actually hit the lumps. So, my lovely ent cons gave me 2 options. To have a biopsy as a day case and hope that the sample was reliable or to monitor me closely and repeat the ultrasound again in a few weeks. I have opted for the latter as I'm fed up with being prodded and poked for now! I know they are keeping a close eye on things so thats good, and if anything changes in the meantime I can of course get seen urgently.
So, I am sitting tight for a few weeks, then I will have another u/s and also have to see my onc. Thank you again for your support, I've no doubt I'll be back on when I get the date for my next u/s!!!
Take care all,
Like Thistle I have been wondering how everything is. Hoping to hear how you are soon. Take care,
Concerned we have still not heard from you.
Still thinking about you and hope to hear how you are.
Love and prayers.
Getting concerned we have not heard from you.
Thinking about you and hoping you are alright.
Keeping you in my prayers.
Love and take care
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.
Just to say I am thinking of you and hope everything goes well for you.
I remember your posts and what a caring person you are and the terrific support you gave to everyone.
Please let us know how things go. Lots of hugs.
Love and take care
Hi Kelly -
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.
Keep us posted
I cant help with the specifics but just wanted to say hello. I was diagnosed in March 2007 too and I remember you and your posts very well!
I am really sorry to hear what a rough time you've been having and I have everything crossed for you that these lumps are not sinister in any way.
You take care of yourself
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.
Sending hugs ((((((((((-))))))))))
Thanks Lindiloo, how are you getting on??
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!!
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
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.
Take care and thanks again,
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
you have had a rough time of it, take care
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.
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
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.
Apologies for waffling!!
Take care all,