triple negative is more of an americanism i think even here doctors generally dont diagnose you with TNBC but say you arent receptive to hormonal treatment nor herceptin which in turn means its negative for these 3 recptors which makes it triple negative.
i had quite a lot of pains in my boob from radiotherapy and had a very burnt patch and although rads finished over a year ago you can still see my rads field… im presuming you had a lumpectomy in which case you would still normally get a mammogram annually… i also think perhaps that you mean grade 3 rather than stage… grades are 1 to 3 and tell how fast the cells change grade 3 (which is what the majority of TNBCs are) change quickest making it the most aggressive… stages are the extent to which the cancer has spread so a stage 1 is a small tumour with no further spread, stage 2 can be a small tumour with nodes involved or a larger sized tumour without nodes, stage 3 usually has quite a lot of node involvement but not spread to other organs… if you had a lumpectomy then its most likely you will be stage 1 or 2, but your onc can clarify this.
i get annual mammo and i also have a gene mutation in BRCA2 so i get annual mri because of that… i was discharged from my oncologist before id even had my last chemo. i see my breast surgeon once a year or more often if i have issues or concerns… i doi this by contacting my BCN who arranges an appt.
pain following radiotherapy can last for many years as the effects are very long lasting… the treatment that just keeps on giving!
hi lulu thanks for that. did speak to breast nurse and she said the same as you re radiotherapy and to take pain and anti inflamatories and then to gp if no better. think i just have days when i feel panicked and isolated as most people i know have hormonal breast cancer. have joined a support group too. thanks again
luna glad you have joined a support group we also have a very informal one which is great… its good to know others have been through the same concerns and worries as you have.
Hi
I had chemo first in January 2011 and was given the Drug Trial Avastin.
My lump was in my left breast. It shrunk from 3.5cm to 1.3cm.
I also used the cold cap treatment which was very successful.
Beginning of June I had a WLE with a SND Biospy - Blue dye and a radioactive injection.
The result came back as node clear.
The safety margin around the lump came back as clear.
So radiotherapy was due to start on 15th August, which enabled us to have a family holiday (married with 2 girls.
All surgery healed very well after 4 weeks I was swimming and 6 weeks back to the gym training (not as heavy as before op).
7 weeks on I felt a lump in my armpit. I went to get it checked out they said it felt like fluid an ultrasound appt would be sent to get checked. We went on our hols but the lump was causing discomfort. A week after my hols the appt came through went for ultrasound she said we will drain the fluid, the lump was still there so she sent it off for testing. Next day my BCN rang arranged for me to see the surgeon the following day. There was cancerous cells in fluid!!
I was told that the SNB was 98.5% accurate, I was the unlucky 1.5% it didn’t work.
They got me booked in the next week for a Level 3 Axillary Full Clearance.
My surgeon didn’t fit a drain but I have been up twice to have it drained through needle.
A week later I went to see surgeon with results.
In total I have had 31 lymph nodes removed - only 2 luckily were affected. The lump I felt was 2 lymph nodes next to each other.
Two weeks on and I am starting to experience cording. Will see my BCN tomorrow for advise.
They had to cortorise the nerve and split a few nerves to complete the clearance. I have had lots of pain - pins and needles, electric shock type pain and numbness to upper arm.
My whole treatment had gone really well til this happen.
I am now wondering was it the Drug Trial (Chemo) that made this test inaccurate or by having chemo first has it kept the tumor down?
I am know going to ask for a CT scan as who knows if it’s not gone further?
I made a friendship with 2 girls during this time - 30 and 28 yrs. Both had chemo, surgery and then rads. They didn’t have drug trial ??
I worried how this surgery will affect me long time. Prior to this I did a lot of Boxing and kick boxing. Running is also a passion. Will I return back to normal?? I’m doing my exercises 3 times a day but this cording? is making it harder.
Any help, advise or same situation would love to hear.
Very long but new to site.
Hi Blondie,
What a good thing you were so proactive in checking yourself, how unlucky to be in the 1.5%.
Your BCN can advise about exercise in relation to the cording, you could ask for physio referral re cording. I asked but didn’t get and sometimes wish I had pushed a bit more. Still get a little cording at times after a year, and try to get back to the exercises again.
Perhaps you could ask on the lymphoedema (LD) threads re activity, or again ask your BCN for referral for LD advice. Overall activity should be good, I have read someone with LD recently commenting on tucking the affected side hand in their pocket when walking any distance, when you are running is the movement of your arms conducive to better lymph drainage? Anyone know?
Lavender
i suppose there are no 100% guarantees and unfortunately with different treatment you may still have had the same result, but its very good that you were so vigilant… like you said the SNB is highly effective and its the most reliable method of checking for nodes… if you had gone down the route of a traditional auxillary node sample then nodes they may have removed for their sample could easily have been the ones that didnt contain cancer either.
there may have been some response initially from the treatment but the sentinel nodes is still normally the one that cancer cells drain to first and when removed they are looked at under the microscope to check for signs of previously treated areas, so it doesnt sound like there was anything in the sentinel node… its very unusual for cancer cells to skip the sentinel node or may be that it hadnt quite reached the nodes at the time of surgery and was just on its way there arriving after the sentinels nodes were removed… sometimes we honestly never know the answers and could beat our selves up over the choices.
as you have had positive nodes identified there is no reason why you could not ask to be re-staged and request chest X ray, and liver US scan and full bloods including LFTs. although your best to discuss this with your team as it could be that its just too soon after treatment to identify if there was any spread that has maybe responded to treatment.
and with these scans comes a whole new range of anxiety… i have just been re-staged (all negative thank god) following a recurrence for positive pectoral muscle nodes after a neg SNB 2 yrs ago and aux is still node neg… but they now think its not a recurrence but the cancer has been there the whole time so feel incredibly luck its not spread.
i agree with LL about physio for the cording… i get it now and then and had it for months following my original surgery. but also to help prevent lymphoedema and think you will need to take it easy exercise wise to start with and just not overdo the the strain or your arms… LO doesnt always occur straight away and can develop over many years so you just need to remind yourself even yrs down the line there is still a potential for LO especially if your bad to your arms.