After my recent skin sparing mx my results weren’t good - 15/17 nodes affected. Not all severely, but with “evidence” of cancer. I’d previously had neo adjuvant chemo for a 5.9cm lobular bc, which shrank to approx 3cm at the time of my op. Surgeon confident about margins to skin and chest wall.
BUT he was surprised at the number of nodes involved. scans etc had indicated maybe up to 3 (which i took at the time with a pinch of salt) but this has really thrown me. I’ve managed to be strong and positive for months during the chemo but what i want to hear please if any of you have any, are stories from those of you who have NED some time down the line from diagnoses similar to mine.
I’m 43 an in a similar position to you,i had a tumour the same size as yours ER+(chemo has shrunk it quite alot) having surgery 23 feb (mastectomy and full axillary clearance)i guess like you i wont have the full picture until after the op.Its a very worrying situation, and I sure there will be ladies on here who have had very positive outcomes with our situation.I personally have resigned myself to think positive, but except that this is all out of my control.
Love Lesleyx
I was diagnosed in April 2008 with wide spread DCIS and had a mastectomy with an immediate reconstruction. The surgeon was confident that no spread had happened outside the breast but took away some nodes for sampling. How wrong he was. All the nodes removed over two surgeries…13 in total… showed signs of cancer. I have travelled the chemo and radiotherapy routes and have had Herceptin, the last being on Xmas Eve 2009. I had my follow up oncology appointment on Tuesday last and at this stage am classed as no evidence of disease. I don’t be seen by the onc for 2 years which I find a bit daunting. There are several women on this forum who are also NED and are futher down the road than I and who have had lymph node involment. I do be scared and try at best to think positive…but it can be hard at times even after all this time from the initial surgery.
Thank you both very much. It’s fairly worrying but what else can we do but try to stay strong and focus on prevention if possible. forgot to add I was also ER++. I’ve just started Tamoxifen; crampy tum for a couple of days initially but it has settled down now. Starting rads in 10 days.
Lesley for me at least the op was ok. Smooth recovery and good mobility quite quickly. Have inflatable implant in !
I;m with you with this one. I had a large lobular tumour about 7cm. The first consultant I saw that there weren’t any lymph nodes involved. I was generally not happy about his manner and his treatment plan so I went for a second opinion. This second surgeon said immediately he could feel enlarged lymph nodes - the oncolcogist also could feel them straight away. It turned out to be 9 out of 17 nodes.
I think you can drive yourself mad with worry. The main thing is we are having lots of treatment some of which was available in the past. I try to keep positive and actually feel lucky to have had so much treatment - women in some countries wouldn’t get a fraction of what we do.
Onestep - out of interest did your tumour seem to come up quite suddenly?
Elinda, yes and no. yes in the sense I became “aware” of it quite suddenly, if you know what I mean. It presented as a sort of thickening more than a lump, so i waited 2-3 months to see if it would settle. I was 44 at diagnosis and thought it might be perimenopausal hormonal changes. But, and it makes sense, I understand this is how lobular tumours often present, ie. they aren’t obvious until they’ve reached a a largish size.
I was exactly the same,had sore breasts for months around period time both breasts would swell then go down,i’ve always had this problem, but then i noticed my breasts seemed to be tender for a longer time before each period.Could’nt feel a lump more of a mass.
Lesleyx
I was diagnosed with lobular bc in August last year - 1.5cms plus ‘satellites’, totalling 1.9cms in all. I was really lucky that I found a lump. It was on the outer edge of the breast and I am fairly slim, so maybe that is why I was able to feel it. Having said that, I ended up with a scar about 9cms long, although it has shrivelled it bit now, along with the breast!!!
I am a four year misdiagnosed lobular lady. My GPs refused my request for further investigation saying that my symptoms of armpit swelling, thickening and lumps were the remains of a viral infection. Unfortunately, I believed them. By the time I reached age 50 and put myself into the system (no point in going back to my GP as I had already been refused three times), my cancer had advanced itself into 15 of my lymph glands. I was diagnosed on the 7 February 2005. WOW that’s five years ago and I’m doing well. Just wanted to give you words of encouragement.
Jeannie thank you for taking the time to answer me. you’ve done really well and i’m taking encouragement from your words.
thank you…it’s very frightening.
Jeannie - good to hear you’re doing well! I often think the same that we don’t hear from the ones doing well.
Onestep - I was told that the cancer would have been there at least two years but I couldn’t feel anything. I did a breast check in November 2008 and even asked my husband to do a double check for me as I’d read an article on breast cancer and neither of us could feel anything.
I’d had a lot of gynae surgery and my GP thought I was going into early menopause as I was having terrible headaches. I was started on HRT in December 2008 and within 6 weeks had the 7cm tumour. It started with some tenderness which I thought was just hormonal changes and then flared up into a massive thickening very suddenly, in a matter of days. It was very frightening.
I found out after that the cancer was 8/8 oestrogen and progesterone receptive and the HRT contained both of those.
The consultant said it was a like a spider’s web with dots of cancer around that had joined up. I had a brain scan for the headaches which was fortunately clear.
I don’t post very often but reading your comment about not hearing from those doing well I thought I would add my two penneth.
I was first diagnosed in 1985 had lumpectomy and rads and did well for 20 years, I had a recurrence in 2005 when I had mastectomy with immediate LD reconstruction, had further recurrence last July where my lymph node was infected. I had been telling the breast care unit on my check ups for 18 months about a lump I could feel under my arm but I was told it was a leak from my implant and not to worry. I had been to see my GP on at least 3 occasions with the same concerns. Eventually my GP referred me to a plastic surgeon who was happy to take a look, I had 2 lymph nodes removed under local anesthic and it turned out one of them contained cancer.
It worries me that it is so hard to be taken seriously especially with my history.
Although I have had two recurrences I feel I have done well since my first diagnoses 25 years ago.
Thank you for sharing your breast cancer story with us. 20 years in between is a long time but it goes to show, we must never get complacent.
My GPs seemed ignorant to the fact that lumps under the armpit could possibly be breast cancer. I find it worrying that even the breast care unit could dismiss such symptoms without doing immediate further tests. Much needs to be done to raise the profile that breast cancer can present itself in other ways and not just a lump in the breast.
My advice would be to look out for yourself, take an active role in what is going on with regards to your treatment etc and don’t take NO for an answer if you have any doubts or intuition that things are not as they should be.