P.S. I'm slightly worried now that the title of this thread might be offensive, never mind the fact that things have moved on and I'm perhaps not quite as 'over the moon' as I was originally when I got my liver and lung scan results.
Apologies to anyone if this title offends at all. I was obviously chuffed initially when I posted this but please let me know if you are offended and I'll see if I can't arrange for it to be changed/deleted.
perhaps we could earn some extra cash dealing 'drugs' - we could pool our resources and establish our own pharmacy!
I'm not sure, now, whether I have a recurrence or another primary. I had two tumours originally - which I now believe are being referred to as two primaries despite being of similar grade etc. This time, the tumour is grade 2 (as opposed to grade 3) but is still ER/PR +, HER2 -. I'm just relieved that its been removed and that, hopefully, I will be having RT shortly to destroy any remaining rogue cells.
As for the hot spot, I have a consultation on Monday - to discuss RT - when I will also ask about the results. I had a bone scan a year or so ago because of hip pain - it showed early signs of arthritis but, as far as I know, no uptake on my rib. I've had my down days, but, until I know conclusively, from now on, I'm going to try not to let my mind run away with itself!
Chin up everyone!
i was 37 first time then 40 when i got the second primary and recurrence at 43..... although it had been there for about 4 months... so would have been 42 at that time... so kinda similar in age to you ladies.
i had epi-cmf last time as that tumour was a grade 3, first one had surgery and rads but no chemo as was a grade 1, this current tumour is a recurrence of the grade 3 i had last time and had surgery soon to get chemo and they are querying whether i should get more rads or not to the area beside my previous rads.
naz one of my friends had a hotspot on her ribs on her affected side it turned out to be some damage whether you had doen her back flap reconstruction.... so im keeping my fingers crossed for you that its nothing sinister.
I am 41 too - bit cr*p all this isn't it but we keep on smiling because the alternative isn't worth thinking about!
I am on FecT - just had 3rd fec. I am having a lift on my unreconstructed side, a new nipple on my recon (which was done from my tummy in June) second level axillary clearance and an ooph - then I will go back on Femara or Aridex I expect. I may also have in the future a voluntary MX on my other side as I have Lobular cancer which I have been told is sneaky and has a higher risk of mirroring but I am still undecided on that one.
Hope the bone hot spot it something less sinister like arthritis.
No Herceptin for me - think I have enough drugs in me to start my own chemists!
Hi Ruby, I'm sorry that you're having to deal with this again but I'm really pleased to hear that you are now half-way through chemo and that there has not been any spread to any of the organs.
Yes, I have thought that my treatment up until now has been too heavily biased towards saving my femininity/womanhood and that I was perhaps not treated as aggressively as I could/should have done. But I like Lulu's outlook, and try not to reflect too much on my original treatment.
Unfortunately, I'm now awaiting the results of a bone scan that I had recently - the technician identified a suspicious hot spot on one of my posterior ribs (on the same side as my reconstruction). As you can imagine, I'm desperately hoping that it is not the obvious and that the radiotherapy that I'm still waiting to start to treat the local recurrence will be the last of it if not indefinitely then at least for another few years. Of course, I will still need regular zoladex injections and an AI followed by further surgery (e.g. an oophorectomy and a prophylactic mastectomy) but that appears to be part and parcel of a breast cancer diagnosis.
You mention that you have additional surgery to come at the end of chemo, do you mind saying what this surgery is? Will you also be having hormone therapy and/or Herceptin? What chemotherapy are you on, btw? I was given epi-cmf and found the cmf much more manageable than the epi, although the effects are cumulative.
Keep in touch.
P.S. Meant to add that I was 37 when I was diagnosed and am now 41.
Hi Ladies - just been reading this thread and I too have had a recurrence very close to my orginal rads area - in fact I had two tumours one slap bang in the middle of the rads area and the other presented as a skin met. Looked like a spot but was rock hard and immovable under the skin. The one in the middle of (my now gone) breast just felt like a pea sized lump but could be moved, I am classed as local recurrence with skin involvement. Am nearly half way through chemo at the moment having had MX and recon - got more surgery to come at the end of it. But like a lot of you although in nodes not in lungs, liver or stomach.
I think age is possiby a factor with this (I was 38 at initial diagnosis) and also if I am honest I dont think I was treated aggressively enough first time round. If I could turn back time I would have opted for a MX instead of lumpectomy and would have had chemo, I suspect some surgeons concentrate rather too much on saving the breast and not enough on saving the woman long term. Just my opinion.
Will be thinbking about you on the 15th. Keep us posted as to how it all goes.
thanks nellie... when is your results due?
i got my date for surgery and having an op on 15th to remove the nodes in my chest and few under my arm.
due to have some kind of taxane for chemo i presume it will be taxotere... the team in my surgeons absence has said no to rads but he is still very keen and said its because they dont realise that the recurrence is higher up so i think he is gonna push for that.
Good to hear such appositive attitude.
Hope I will feel the same after my results
sounds like yours is similar to mine.
i had Bc in right in 2006 and then a new primary in 2009 and have just diagnosed with recurrence to the interpectoral lymph nodes in the muscle of the chest wall just above ave the radiotherapy field.
seeing the prof on wed but already been told he will operate on chest wall and will prob have more rads to chest and also to neck but probably at a specialist unit as it left sided and previously had to breast so they are worried about cardiac damage... dont know if i need chemo yet.
i too am pretty calm about it... cant believe i got again so soon... its just over 5 years since the first diagnosis and only 18 months since treatment for the second one.... like you i was getting back on track and nows its come back and ballsed everything up again.
do you know what your treatment is going to be? and do you need more scans? i had bone and chest & abdo CT and sign of mets which is at least a bit of a relief.
naomi and tina... its hard to try and think if only they did this or that i may not be in this predicament... i asked for stronger chemo when diagnosed and told i didnt need it and questioned how close the radiation feild was to my tumour but was reassured that not having tax was good and the rads were fine.... this recurrence however appears to have been previously treated so looks like it may have been there for 2 years although probably too small to detect... but had i had Tax or rads higher up i may still have gotten a recurrence and then i wouldnt have these treatments as options... so i just need to tell myself everything happens for a reason.
Love and hugs.
I had a MX March 2008 then chemo and RT TAMx and AL and STILL today diagnosed with local reccurance to chest wall juwt near my MX scar - just outside my RT area
so this XXX thing just doesnt seem to play by the rules.Strange thing is i feel fine and CANNOT BELIVE it has come back. Am strangely calm; but feel alone too........I so wanted this journey with BC to be over..........
Hi Tina, I felt a small lump not far from the site of one of my original tumours, close to the surface of the skin. I didn't ask what my risk of recurrence was (I chose not to ask for any stats and just assumed that I had a 70% chance of reaching the 5 year survival rate) so am not entirely sure why they didn't suggest rads initially - it may have been because I had clear nodes, and no vascular invasion (although I had grade 3 multifocal BC and DCIS). I too wonder whether it would have recurred if I'd had radiotherapy initially, but no point dwelling on the past now.
Right now I am just concerned that I still haven't received an date for an appointment with an oncologist so that the radiotherapy can be arranged (I am trying to arrange a transfer to the Royal Marsden because I have since moved to London from Coventry and I can't possibly have radiotherapy there rather than in London).
Why is nothing straightforward!
Hi Tina, just to say that there's someone else on the boards who had a recurrence in chest wall nodes after mx. I don't think she had rads either. She also had a recurrence in her spine, diagnosed at the same time. xx Jane
congrats on the clear scans :)))
just curious about ur recurrence- if you had a mastectomy, how did the recurrence present? Was it in skin or chest wall, nodes? I only ask as it's quite rare after an mx but I was one of the unlucky ones who did have a local recurrence. I've only heard of it recurring in the form of skin mets so was just wondering what your experience has been?
I also wasn't given rads as my risk of local rec was so low!! Clear margins, only one node + less than 4cm so was told no rads. I also wonder if having rads would have stopped the recurrence. At least rads is an option 4u now.
All the best with your treatment
AZ...PLEASE LET ME KNOW HOW YOU ARE, MY E MAIL ADDRESS HAS NOT CHANGED.
I HAVE HAD TO GIVE EXEMESTENE UP, SIDE EFFECTS WERE, PANIC ATTACKS , FEAR SO BAD I THOUGHT OF POPPING OFF TO DIGNITAS, FATIGUE AND HOT FLUSHES I WAS GETTING TWO OR THREE EVERY HOUR. SO BACK ON THE TAM FOR NOW. FEELING A BIT BETTER AFTER BEING OFF THEM FOR FOUR DAYS. LIKE YOU IF IT'S GONNA BITE YOU ON THE BUM AGAIN TAM OR NOT IT WILL . IT DID NOT WORK FOR YOU BUT IT WORKS FOR SOME SO HAVE DECIDED QUE SARA SARA
SENDING YOU MY LOVE AND BEST WISHES. GO FOR IT GAL!!! WHY DID YOU N OT HAVE RADS, WAS IT YOUR CHOICE OR THE PROFS???
Love You Bobbiexxx
Hi Bobbie, good to hear from you - yes, managing the side effects is almost as bad as the initial diagnosis/treatment. I'd just got used to them on Tamoxifen (i.e. had the hot flushes, aching joints) but I suspect now they will want to put me on something else altogether now (possibly remove my ovaries to push me further into the menopause), such as an AI! Great. What sort of side effects are you experiencing?
Yes, sadly, the mastectomy wasn't quite enough! As far as I'm aware it is still very local, so, apparently, it doesn't change my prognosis at all (I don't what my prognosis was so that doesn't really mean anything - it could be that it is still just as bad!). I had surgery on Thursday and just waiting for the results now. You're right I didn't have radiotherapy the first time (I'm questioning my initial treatment which I don't particularly want to do) but fingers crossed it will get it all!
Hi Naz ...What in hells name is going on!!!! Looking up Exemestene, Onc has changed me from Tam. Side effects are ' B ' awful.
Saw your name and found you stating you have a local reacurance....Thought you had a mastectomy and that was it. Please get in touch ...Have told Anna your news but to be quite honest not sure what's happening. Also thought you had rads at end of last treatment, However if I am reading you correct you didn't
Indeed, I remember, K - it is such a relief, isn't it?! Strangely, I am even looking forward to surgery and the radiotherapy afterwards.
I had similar news two weeks ago and know just how you feel. I am in for surgery on Wednesday and it seems like a walk in the park in comparison.
awww, that's fabulous news, yes just be like everyone else,lol. I can only imagine the relief to hear those words..normal! So pleased for u, love Heather x
Just wanted to share my good news with you - I've been diagnosed with a local recurrence but both my lungs and liver are normal. I never thought I would be so pleased to hear that I was no different to anyone else - I like to think I am very much an individual!
I know it is relative, and things could change overnight, but, for now, I am chuffed (not to say, relieved!).
My lungs and liver are normal....Yes!