Hi all. Back in the nightmare world after a whole 6 months without treatment! (In anger stage at the moment). Need to vent and find others going through similar!
Original bc Oct 08: adj chemo, mast, rads, herceptin, tamox. Found very small moveable squishy lump above collar bone. Had all the tests. Saw (rather patronising) Professor Onc at clinic who told me that lump felt like cyst, scans were clear and ultrasound suggested lump innocent, so he didn’t feel anything to worry about. Come back in 3 months. Two days later biopsy results in (they were late) and revealed cancer. Had op to remove it before Xmas. Now taken off Tamoxifen (thinks I may be resistant to it), now on Zoladex, will be back on herceptin and just started chemo again - capecitabine tablets. he has applied for Lapatinab, which I prob won’t get. Prof Onc now very apologetic!
Nurse said this was secondary cancer, Onc says localised recurrence, surgeon says somewhere in between.
Part of me feels like this is just the beginning of the end. Part of me wants to not have any treatment, as I don’t believe it works. Part of me wants to fight, thinking about my 5 year old boy monster.
Just so angry and so fed up to be here again. Have read lots of sad stories, so am pessimistic about my future. Inspiration needed!
Gx
Poor you! There really isn’t a way to get rid of the horrid ‘scared/angry/confused’ feelings until you get more info is there? You deserve to be able to rant, so keep doing so - you have every right to.
My diagnosis (second time round) was the same confusion about ‘what it is’ and in the end I am not asking any more - as long as I get the best possible treatment. Nothing is certain with this disease, statistics aren’t really helpful and everyone’s outcome is different. It’s not very helpful when people say ‘I knew someone who had bc and they’re still around 20 years on’ as that just raises more questions.
I know I went through blaming everyone (my previous treatment, my previous surgeon, my gp - anyone really), my family wanted to sue people. Not helped by off-hand or patronising medical attitudes (at least I had the satisfaction of seeing their faces when they realised I had reason to have been concerned about a new lump). And it isn’t helpful to be told about all the other wonderful women out there who are dealing with it (even though this is true; there are wonderful women), as they are not you in your situation
So, the only inspiration is yourself. You’ve been through it before; you’re taking responsibility for getting it sorted and you sound like you’ll be the sort of person to understand and question things, which means you can make sure your treatment this time is the best it can be. Also, no oncologist or surgeon wants to fail - they and the team around you are after the best possible outcome.
So, rant, be angry and know that you deserve to be - and get eating the chocolates now before the treatment affects your taste again. There are lots of us going through this again and we can go through it together.
Similar situation to you, I think. I had “several” lymph node mets under collar bone and in armpit diagnosed Feb.10 after primary bc Dec.07. I was told they were inoperable due to location. Had taxol chemo.weekly between Feb. and Aug. - slight reduction, then rads to area in Aug/Sept. Last CT scan in Nov.showed more or less all gone. I’m still being monitored - seeing onc. and having another scan soon, so things are still uncertain. But, I hope you can take heart that someone in a comparable situ. - in fact you’re in a much better one as you only had a single met and surgery - can have a favourable outcome. It’s a bit of a bone of contention whether collar bone tumours are secondaries or not, mind you, my onc. seems to go for a curative approach and has given me lots of chemo. and super strong rads. I too have a son - he’s 12 and growing more independent in many ways, but is also on the Autistic spectrum - high functioning- but has extreme obsessions and sleep problems and very much still needs me. I gather strength from him in many ways and am not planning to go anywhere any time soon! I know you’re an awful, dark place right now, but it will get better. PM me if you have any questions,
Hello Gemdancer,
I can’t really make any useful comment on your present position. All I want to say is that I hope all goes well for you. You have your beautiful little son to give you strength for your comming treatment,
I am in a similar situation to you except this is my third time the first two diagnosis being primaries. Had WLE chemo and rads 1st time, then Mx and chemo the 2nd time.
I found a lump on my chest bone went to se BCN and had USS I saw the radiologist he looked at the U/S and said it looked like fatty necrosis and was reluctant to do a biopsy but did an FNA this was inconclusive and said abnormal cells but probablly benign, advised core biopsy which showed cancer.
I had the lump removed on 4th January this year
I too have been told this is a metastatic cancer by the surgeon but the nurses say it is a regional recurrence, I am yet to see the onc so have no idea what treatment he will recommend.
I have had a full body and bone scan and these were clear so as far as they can tell there is no further spread to major organs so that is something positive.
I did not need herceptin as was HER2neg but all have been strongly ER pos, had my ovaries shut down with Zolodex had arimadex but was changed to Extemstane after 2nd Dx.
I hope things go well for you
we will get through whatever is thrown at us because basically we have to, the alternative is to give up and that is not a choice we have too much to live for
Hi Ladies,
Thank you so much for your wise words. I don’t feel quite so alone now. Hearing other stories does help. You all just understand where I am so clearly. It makes me feel stroked!!
I did feel like giving up because I feel like they gave me too much hope originally. I always felt it wasn’t going away that easily! But I do look at my little one’s face and know I have to fight. It’s just so hard not to feel bitter and twisted when I see the “normal mums” in the playground. I’d also just gone back to working and started to feel like a real person again.
We have to live with such uncertainty, it makes thinking about the future so hard. Want desperately to see my little one grow up…
Gailx
Hi gail
so sorry to read about ur recurrence so soon after finishing treatment. Sounds like they are tweeking your meds + throwing everything at it so fingers crossed the outcome will be a very good one. I also had a fast recurrence late summer (within weeks of completing chemo!) but I am triple negative so hormone + her2 meds are not an option 4me. I’ve had major surgery to remove skin + section of chest wall followed by intensive radiotherapy. I have a few lumps + bumps now that are causing anxiety+ have a repeat ct + bone scan thus Tuesday so a stressful week ahead Cant help thinking I’ll be back on chemo b4 the end of the month…
Do let us know how you are getting on + if u manage to get the drugs you have requested. Being hormone + her2 positive will give u many treatment options should you need them but hopefully you will make a full recovery
I also have a little boy he is 20months tmoro + can totally relate to the terror you are experiencing regarding your future. All the very best
love tina x
I don’t want to be one of those people who says ‘look at me 21 years on- you can do it’ because I don’t really feel that is helpful to anyone. We are all individuals and respond so differently with this wretched disease. I did have several recurrences including the lumpy lymph nodes around the collarbone and neck. My understanding of that is very much like your surgeon said - somewhere in between. The cells moved a bit further than the breast but not got to any major organs and treatment such as chemos/hormonals can stop them in their tracks. I think it is good that he has put you back on herceptin. Some oncs under NICE guidelines have stopped giving herceptin on evidence of recurences which I am sure is just an attempt at money saving at the expense of a patient’s life! (dont get me started on that one). It does sound like you have a consultant who is going all out to get the best for you. How are you getting on with the capecitabine. From my experience they start you off on the highest dose and there is some debate about whether it is really necessary to use such a high dose so don’t be afraid if you get too many side effects to ask for a dose reduction. It is a brilliant drug if it works well for you and the side effects aren’t to overwhelming. It seems we just can’t avoid the awfulness of going through the black clouds of anger & depression over all this but I hope you will soon be able to find yourself in a better place - you sound like a fighter to me. Good luck with the treatment and hope you get signs of it working really well for you.
Hi Ladies,
I’f forgotten what a whirlwind of appointments it was when you’re back on treatment. Plus, my gh (grumpy husband) has manflu!!! The horror!!!
Thanks Tina and Dawn - found your posts so helpful. Tina - my little boy has been asking questions about heaven recently and it just breaks my heart. They make it easier and harder to cope if you know what I mean. I am keeping everything crossed for your scans. I have to have an MRI to check my bones next. The worry is unberable I know.
Dawn - very interesting - thank you. I like inspirational stories. Gives me goals. I’ve read a lot of sad stories and it is hard to keep strong sometimes.
Re: capecitabine. Seems OK, but only been on it 6 days. can tell it hurts the tummy, but not too bad yet!!! Slight nausea. Chemo cough back. Got this the first time too…weird. Didn’t realise about the dosage, so will keep that in mind. herceptin starts next week and am grateful to have it even more now!!
Dark clouds have lifted a little. Feel like I’m in denial now!!!
Hi all - I would love to hear from anyone who can give me some hope in this situation. Exactly two years ago had swelling under right armpit and went through all the tests and they found a very small tumour in my right breast (grade3) Had chemo then lumpectomy with first layer of nodes removed (15) and only one was positive then finished off with rads. 2009 was a really bad year, hardly saw my children who are in England and I live in France but swore 2010 would be a good year. It was really although on Arimidex for 5 years and get tired, all in all my energy levels are good. Then went last week for routine MRI and they found a 2cm lump near the internal scar under my arm. Both underarms have always felt swollen since I had my lumpectomy and the doc said it was the tablets, hormones and all that! Went yesterday to have a biopsy but they could only do a fine needle one as they said the lump was too deep. Waiting for results hopefully next Thursday, but in the meantime my mind is playing awful tricks and thinking it’s the cancer back (the doc definitely said it wasn’t a cyst)- going crazy with worry, just cannot bear the thought of having chemo again! Has anyone else been though this?? Ginny
I’ve tried a few times to type this question… but I delete it again as I’m scared of the answers I will get. I too have a squishy moveable lump above my collar bone. Doc, and surgeon said it feels like muscle, onc said a vein. it wasn’t there before my BC, I know that. I had an ultrasound on it in the breast clinic, the ultrasound lady said it looks ok (would she definitely know if something was wrong?) I googled lymph nodes, and it’s the ‘superclavical’ I think (or that’s where abouts it is on me)… I had a breast MRI 2 mths ago as I’m BRCA1 aswell, that came back clear, but that was only of my breast. Someone please tell me I’m being silly? xxx
ps I’m triple negative x
Emma I don’t want to tell you you are being silly as a) I am no expert and b) I don’t think ANY worries are silly in this horrible situation. But I wanted to say I hope everything is okay and your concerns turn out to be unfounded. I would be encouraged by the drs and nurses thinking there is nothing to worry about, but do not be afraid to press them for further tests if your mind is not at rest. It is your body after all. Have you tried phoning the helpline here? xxxx
Hello Ginny
I really empathise with you - I had a regional recurrence in 2008, 4 years after primary dx. I found a lump near my armpit (it was actually in the lymph nodes in my pectoral muscle). I can’t say whether your lup is in any way similar to mine, but I do want to say that if you do have to go through it again, as i did, it is do-able, not great, but definately do-able. You may not need to though. The waiting is awful, worse than the treatment i think. Lots of hugs and keeping my fingers and everything else crossed for you.
Hi Moser
Thank you so much for your response - I hope you are better now and enjoying your life.
Can I ask you if your lump stemmed from another tumour in the breast as mine did before. Before, my nodes were swollen underarm and they traced it to a very small tumour in the right breast. This time there is a definite hard lump on the scar internally underarm where they took the nodes out, but they couldn’t see any lump in the breast from the MRI. I know it’s difficult to say and everyone is different but as I am feeling ‘puffy’ under both arms, not sure what it could be.
When you had your recurrence did you have the same treatment as before?
Hugs
Ginny
I feel awful ‘gatecrashing’ this thread, but was in panic mode when I read the first post.
Yes I rang the helpline, it was them who advised I get it looked at, then I had an ultrasound. Husb just said we could pay to go private and ask an expert to tell me exactly what it is… just need peace of mind xxx
Hiya emma
sorry you are going through all this worry Hun. I’m hoping it’s nothing sinister especially if you have had it looked at. BUT like you, I would want a conclusive answer, not a ‘I don’t think it’s anything to worry about’ type of response. Being triple negative makes us all the more anxious + paranoid but quite rightly so. I would demand a ct scan. After what you have been through, I think it’s a fair request.
As u know, my bc has progressed to the superclav nodes + it is a recurrence ‘hotspot’ so defo get it properly checked BUT remember that lymph nodes can swell when we have infections, etc etc. And also, hold onto the fact that you did catch your bc early before it hit yur nodes so it’s unlikely to have spread.
Pm me anytime if you like
good luck
tina xx
Ginny, they said it was possible that my recurrence was a stray cell left over that had migrated and had not been knocked out by chemo and rads first time around - but really i think they didn’t actually know. The original was not tested for HER2 but the recurrence was and it was positive so my theory is that the original was positive too byt because in 2004 they didn’t test primaries no one knew about it. The recurrence was treated with a different chemo - Taxotere (sometimes called docetaxel),and also with herceptin. I also had surgery and rads and am now on arimidex. Love Mo x
Im glad i have just read your post as I am in exactly the same situation, first occurence in Sept 08, had lumpectomy, chemo, mastec, herceptin & tamoxifen and then went i went back for my check up in january my surgeon found a thickening of my scaring in my armpit (same side) - sent me for an ultrasound in which there appeared 2 rather large lymph nodes (had full clearance in 1st op!)biopsy proved to be cancer!
Had more surgery on 8th feb & just loads more tests as in ct scan and bone scan but still no difinitive answer as to whether they are going to put me on any treatment!
My mind is all over the shop & cant sleep!
At last appointment my Onc said that if bone scan comes back clear they dont know what to give me if anything - dont know whats worse!!
Surely they cant just leave me with no treatment whatsoever!
I hope you dont mind but I would like to use your experience as an example to take to my oncologist tomorrow?
All I want is a difinitive answer as to what its classed at and what they are going to do about it just so that I can start planning etc.
Please anyone else reading this and have been in same situation please let me know of what treatments you have received if any.
Thinking of you and hope all is ok today when you see your Onc. I am really worried about the lump they found on the MRI underarm same side as BC. Get results tomorrow and like you, can’t sleep with worry. Just cannot bear the thought of going through any chemo again, certainly can’t have rads again on the same side, am on Arimidex which I thought would be enough to stop any recurrence, so I have my fingers crossed.
We have to rely on their better knowledge and if they don’t give you any treatment it is because it hasn’t spread and they feel they have taken away the offending nodes. Good luck - Ginny
I too am going to gate crash this thread as it like reading something i have written myself when i look back at and I too have gone to write something and then deleted it.
3 weeks ago I found a lump (size of a pea) just above my collar bone! I went to my GP who said to get intouch with my BC team.
I went to see my Breast consultant and had a CT scan and then an ultra sound. The radiologist said she didn’t think it was anything , but my breast consultant could still feel a definate lump, she sent me away saying ‘we will keep and eye on it’ and look at organising a bone scan
Things then went arse over t*t because it appears my allowance for health care insurance has been reduced and I have used up a years allowance with all CT etc etc so i am now waiting for my GP to arrange for me to see another consultant and get a bone scan done.
It only reading this thread that has made me realise I am not going crazy and can feel a lump and maybe they are wrong.
Cant help thinking I’ll be back on chemo b4 the end of the month…