i am wondering if anyone can gie me any advice…in 2008 i was diagnosed with stage 3 hormone receptive breast cancer…had bilateral mastectomy with full axillary clearance on the left side, followed by chemo, rads and hormone therapy (arimadex) i have now found 2 lumps in my neck…doctor id fairly convinced that it is cancerous, have just had bone scan and ct scan, and am awaiting results, which as we all know is the worst time. i have been reading up and am not sure whether this is classed as a recurrence, or as a secondary…i am quite worried, as i know that the prognosis varies massively between the 2
Hi jusmejp,
I was in the same position some 10 years ago when I had a number of lumps come up in my neck and collarbone. I think generally they are a warning sign that something is on the move. I did not have any treatment at when they were first found, but they kept a close eye on things. When more started coming up they tried to biopsy them but some were in places where they preferred not to go!! They went for one that was just below my ear/jawline and a couple of days later I had severe sciatica in my leg. It all rang more alarm bells and they did lots of scans and found I had extensive bone mets. Now obviously that is the point it was classified as secondaries. I think in the States when it moves into lymph nodes around the body they classify it as secondaries but not so in the UK.
It is the worst time now you have to wait for the results. I hope they don’t keep you waiting too long - and really hope for the best possible result for you. Do keep us posted.
Dawn
xx
Hello jusmejp,
The waiting for results is always the pits and the hardest part of it all. There is not use telling you not to worry because that would be silly. However once you have the results and have a plan in place ( if any is needed at all) you will know where you stand. It is the NOT knowing that causes such stress. Please come back on here when you have your results and we will hold your hand as you go along. I hope you get good news though. Take care, Val
Hi jusmejp
I am posting to the ‘Types of recurrence’ information from BCC which you may find useful:
Please also contact our helpliners for further support on 0808 800 6000, the line is open 9-5 weekdays and 9-2 Sat
Take care
Lucy
This is just the question I have being asking since Dx in March!
I was Dx with Invasive Ductal BC grade 3 and at the same time advised it had spread to my neck (although my nodes were all clear - apparently unusual that it was in my neck lymph glands but clear in my axilla)
All my notes and my Onc say I have metastatic cancer (treatable but not curable) but if you read the BCC link above it is regional. My Onc gave me a prognosis of a few months to several years - then added that no one really knows
Apparently the medical profession don’t always agree on how to categorize this!
I have found it totally frustrating, as I don’t feel like I belong to any category - ie not primary and not secondary.
I’ve decided that we’re in a half way house and if my treatment works I won’t bother what its called!
Sorry for the waffle - I know what I mean - I think
Linda
x
I have stage 4 cancer, and my understanding is that cancer is deemed to be secondary when cancerous cells have moved out of the breast, and then got past the lymph nodes to set up in a distant location. So if the lumps you are feeling are tumours contained within the lymph nodes, that would still be considered stage 3.
I can understand how worried you are waiting for scan results, but try no to think the worst.
Hi,
I had a small cancerous lump in my neck, removed just before Christmas. Onc said it was a regional recurrence, not secondary. They have been quite positive with me, but I also know this is a sign of cancer on the move. The horror is just not knowing what is going to happen. I feel like I’m just waiting for it to come back somewhere else. Feel like life is on hold.
There aren’t many accounts of regional recurrence anywhere to learn from, although in the past I have taken heart from some of the ladies in here, including Dawn (thank you). I want to know if there’s any hope that regional could stay that way even for a little while or whether spread is just inevitable and quick to happen. It’s hard to know how to live your life, especially with a little one on the scene!
Linda - your Onc’s prognosis sounds a bit extreme to me. They really don’t know.
Jusmejp - am waiting for CT results too at the moment. Scary times!
Love to all,
Gx
Hi jusmejp,
I know how you feel! I’m 18 months(nearly) from a regional dx in underarm and under collarbone. Been NED for 10 months following rads, but feeling quite (!) apprehensive about my latest scan results on Tues. as I have similar symptoms to when had first dx at start Feb. '10. I agree that it is a grey area - US sites say stage 4, most UK ones say 3c - my onc. said it’s somewhere inbetween a primary and sec.bc. I hate, understandably, the prognosis questions, and prefer to keep my head in the sand as regards all that! But, you can’t really plan long-term as you are thinking…well, I may be on chemo. then, so…etc. For ex. I want to get some sort of job this Autumn but need to hold off till I know if I’ll be on Xeloda etc. Possibly you can have surgery if it’s safe and the cancer is contained, certainly rads and chemo. Rads were brilliant for me. Hormonals don’t seemed to have worked. Chemo. worked a bit. It’s a horrible worrying time for you, but things can move on positively. Wishing you luck and all the best. PM me if you need to,
Sarah x
PS. Good luck to Gemdancer for scan results!
Sarah x
Dear jusmejp, Are you ok?
Dear Gemdancer, Hope your results for CT are good ones. I am waiting for an appointment for my one. Hugs.
Hi Sarah, Hope you are having a good weekend and are doing ok.
Lemongrove, you always to be on top of things and must read up a great deal. I just do not have the energy to concentrate just now so it is good to have someone who can give us so much knowledge. Keep posting.
Welcome Linda, just wondered if you were okay too.
Dawn, Any more news about YOU. I see you posting a lot but wondered how YOU were doing. Hugs, Val
thanks to everyone for the comments…the good news is that bone scan came back clear, and ct scan showed up nodes in neck only…now i have to wait til tues to go see oncologist…was feeling quite elated on fri, when i discovered scan results, but now i am back on the roller coaster again…wondering how many nodes were involved, and what treatment if any…i have seen some reports that say u cant irradiate the same area twice…some ppl have said that chemo is almost inevitable when lymph nodes are involved, and i desperately dont want to lose my hair again (vain i know)and others that say hormone treatment is very successful…i just dont know what to think, and know i cant try to pre-empt things, but its hard not to…will let u know more on tues xxx
Hi Jusmeip
Very happy to hear your scan was clear, other than the nodes.
I know how worrying it is as I had a regional recurrence too, in axilla and apical node. I have lumps swelling and reducing in my neck all the time and it’s so very worrying. I’m about to ring my onc tomorrow about the latest ones.
I’d be interested to hear what your onc says about your nodes.
xxx Jane
Hi Jane
A fb friend of mine who has had an axillary clearance, posted a while back that her onc said her nodes in her neck keep going up and down, because they are having to work harder to clear the fluid now that there are less on them. Don’t know how accurate that is but might be worth suggesting.
Debx
Hey thanks for the reassurance Deb. That’s kind of what OH and I tell ourselves everytime a lump appears! Living with this level of anxiety is truly vile.
Hope you’re well, little ones too, and that you’re staying away from too many BC thoughts. xxx
Jusmeip, just want to say I’m really glad that your C has not got past the lymph nodes, and you’re still stage 3. With regard to whether you can have rads twice in the same area. My understanding is that generally speaking you can’t have conventional rads to the same area twice because of the risk of damaging healthy tissue, but there is always an exception to the rule. Also stereotactic radiotherapy such as Gyberknife, Gamma-knife, TomoTherapy and Linac can be used on the same area more than once.
lemongrove, thanks for that info…will bring it up tomorro if necessary xx
Jusmeip, I had rads to same side twice, one following mx and the other 4 years later after RR in lymph nodes around pec muscle. But the areas were slightly different and did not overlap.LikeLemongrove says every case is different. Good luck with appointment.
Mo
well…got all the news…could be worse, i guess, lol
bone scan clear, ct scan showed lymph nodes in neck and chest wall are involved…onc says he prefers to call it local and regional secondaries rather than a recurrence, as that is such a grey area !! nowhere else is affected, which is good news…they have started me on tamoxifen, to replace the arimadex, and i have to say after a week on it, i have noticed some very strange sensations in and around the area where the largest lump on my neck is…including numbness, and tingling, and a strange feeling of something ‘withdrawing’, rather like tentacles being removed…hard to describe. onc informs me that this could actually be the tamoxifen doing its job, even after so short a time !! they have offered me a clinical trial which involves chemo with taxotere, and another new drug…am very dubious as i had a very bad toxic reaction when i did taxotere before, and had to discontinue it, so they gave me 3 extra FEC, instead, but i have a couple of weeks to decide…hope everyone is ok, and thanks for the support xx
if it had been anything other than taxotere, i would have said lets give it a go…but am really not sure
jusmejp have you mentioned the toxic reaction to the onc. Sometimes they don’t always ready your notes as carefully as they should. Your strange sensations could well be the tamox working on those lymph nodes. I remember when I had a lot of them causing problems and they started me on herceptin they reacted very quickly to the drug and all went down to normal within the first week.
As you say, it could be worse - so am really glad for you that the bone scan was clear. Did he make any other suggestion apart from the trial? Maybe worth a call to him to ask that question as well while you are trying to decide.
Dawn
xx