Because they never found a tumour they have never really told me what type of cancer it is, although one doctor said it was probably invasive ductal. They also don’t know how aggressive or what grade it is. They have had to treat me as if it is aggressive. Fortunately they tested the lymph node for HER2 & hormones before chemo, but they can’t tell me much about it and has made assessment of chances of it returning difficult. I was 46 when I was diagnosed, so none of my precancer could be treated as I never had a routine mammogram.
The lump is in the same armpit but as I have had my lymph nodes removed, my head tells me it is unlikely to be cancer, but I am worrying until I get my results.
I am sorry you had so much trouble getting diagnosed. How are you doing now?
Forgive me for thinking it was the other armpit. I’m quite sure you will be fine but one cannot help but worry until you get confirmation. That’s quite natural.
Your situation does sound quite unique. Am I right in thinking that unless a tumour is found, there is no way of telling how aggressive or what grade it is but they can tell if the lymph node is ER+, PR+ or HER2+? Or are they not able to tell you that either?
I’m doing fine but I do look out for myself probably more than most in light of the disasters that have occurred. I guess being badly let down by the system makes you want to take your life in your own hands and I feel I am doing just that. I did have a BC scare earlier this year - lump in other breast which I was told was a cyst. I was assertive and demanded an ultra sound and fine needle aspiration. They couldn’t aspirate as by the time I went for the tests the cyst had disappeared. I have been told this is not uncommon. I doubt if I will ever have faith in GPs again but I do have faith in my oncologist. He knows what I have been through and I have to trust him.
Just wanted to say stop beating yourself up for not having “found” your bc sooner. I have been a Practice Nurse for over 20 years and consider myself very “breast aware”. Part of my job is to teach other women too. So I was devastated to be recalled after my routine mammogram in April 09 - further tests revealed an 11cm x 8cm lobular bc. How the hell did I miss that??? But have been told over and over by oncologist,BCN, surgeon that lobular cancers are difficult to diagnose as no defined outline and don’t always show up on mammo. So, have had the chemo, the mastectomy, the lymph node clearance, just waiting to have radiotherapy.
Wishing you all the best with your treatment. This site is great as lots of real understanding and support on here. I was quite shocked at how little I knew about bc and all the treatments despite being a nurse.
Hi. I am a midwife and i went back 3 times over 8mths before someone finally referred me to be diagnosed with grade 3 bc…
I was certain my lump was not a blocked duct or a cyst because of the way it felt but because i was a) pregnant then b) breastfeeding my boobs were hard to examine.
Persistance is sometimes called for as if i had left it where the hell would i be now?! The lump was 7 x 5 when it was finally removed as it was.
On a plus point as a staff member/medical person i have had some perks with my treatment and that never hurts.
Hi, I might be a bit late posting but here goes: I was a teacher of health promotion (!) and I ignored a change in breast shape in 2003 for 5 months (I knew it wasn’t right but kept finding other reasons for it) finally found a lump in my armpit and saw GP next day. Was diagnosed with grade 3 Ductal with lymph node involvement, had a MX and clearance, chemo, rads and tamoxifen. Then in November 2007 thought i found a lumpy bit in my chest (same side) which i also managed to forget about until April 08 when I found a definate lump. I was diagnosed with cancer in all the lymph nodes in my pectoral muscle, which i had removed, more chemo, rads, herceptim (the original was HER2neg, somehow this new one was HER2pos) and arimidex. So I vowed i would not ignore anything ever again. On new years eve i found a lumpy bit in my other breast - I was at the hospital this morning seeing the bcn! She thinks it isn’t anything to worry about but I am seeing the surgeon and having ultrasound on Thurs. I am scared but feel that at least I didn’t ignore it this time… just hoping now…
I am another whose primary tumour has never been found. 3 Lymph nodes however were affected and histology showed ER+ve. You are right they cannot assess grade etc for sure but my onc said simply " we know it can travel because it has" I had chemo, rads, and started tamoxifen last week. Just before rads noticed a pitting in skin around nimple in suspect breast and they did an MRI which came back clear of lumps but commented on some skin thickening. I continued rads but now am scared there is some unusual cancer there that does not show up on mamos and rads. Booked to see surgeon who did axillary dissection on Thursday this week as just not happy about this. Wish me luck!
C
Some of these stories are unbelievable re the amount of times people have to go back to gp to get something done. It really is dreadful.
Still recovering from ANC from 4th Jan. Had the drain in for 4 days. Now think I may have a seroma as the swelling seems to be more than usual and now more painful to sleep with the affected arm resting on my body, in fact it’s impossible. Presently waiting for the ward to phone back with a time that I can go and see doc on there.
Felt quite ‘flat’ yesterday, what with possible seroma and arm stiffness. My mother in law rang (she’s had many probs over years with rhumatoid arthritis and side effects from steroids) and she said ‘I know what you’re going through’. I thought, no you don’t and snappily replied, ‘you haven’t had cancer though’ and regretted it immediately. Then again, she always goes on and on about her ailments but at least they’re not life threatening or shortening
Steph - had my clearance on 18th Dec and my drain was in for 10 days, but no issues. Did it come out a bit too soon??? I know that every hospital does it differently, but my surgeon said it needed to be draining less than 50ml in 24 hour period before it could be removed. Hope it’s not a seroma and you feel more comfortable. My arm is still swollen, but really persevere with the exercises, I know they can be painful. I find when I start mine, they are agony and as the muscle stretches, they get easier. I also massage my arm every evening, again sore to start with but gets easier. Physio has said that wound has healed nicely and I can get back to swimming, so that will be good for me. Nothing strenuous though, I have to take it gently!!! It’s early days remember and you’ve had major surgery with a lot of diggin around in there. Take your time…
Chris - good luck Thurs ; let us know how you get on.
J
Hi Janey - yes it was definitely a seroma and had 110mls aspirated which wasn’t at all painful. I still think there’s some fluid left in there, but it can be checked when I go back to clinic on Friday.
Surgeons do vary. The one I was under only likes drains in for 5 days max, as he seems to think that it encourages the body to produce fluid whilst it’s still in. It had drained 50mls the 24hrs before I had it removed. The exercises are quite painful, but I’m obviously persevering with them.
Hi, i had a mastectomy on the 5th jan, i still have my drain in and it continues to drain. It was 60mls again today, i think my hospital take it out when it gets to 30mls.
It must be a pain having to get it aspirated all the time.
I hope it improves for you
take care
anna
I don’t know what’s worse really, having a drain hanging out all the time or having to go back for repeated aspirations. I’ve bought myself a couple of very soft bras as my usual underwires dig in. I feel a bit more normal now with them on, also I want to preserve a bit of boob shape, otherwise I’ll end up with boobs like a tribal woman!
