On the other side of the fence!

Public Archive
1

Hi all, just want to say I’m a qualified nurse and now find myself a breast cancer patient. I didn’t expect this at 48 but then why not?

I first noticed a faint dimple to left breast back in July 2008 which I know can be a sign of cancer. After about a week of feeling around the boob (no lump to be felt) I plucked up courage and went to see GP. She couldn’t feel a lump and didn’t see the dimple under the fluorescent light. I was so relieved when she said everything seems normal, I felt on air when I left the surgery.

But the dimple persisted and I just thought it was due to cellulite or something stupid and ignored it until November 2009! How stupid is that and me a nurse! I think though, I expected more than one dimple or ‘orange peel skin’ as it can be described. It was only until I enquired about the symptoms of another nurse presently undergoing chemo for breast cancer (a brown mark on her breast was all she had apparently), that the bomb hit me and I realised I’d been sitting on this cancer all that time. I soon went back to another GP and had a biopsy, lumpectomy and SNB and now waiting for an axillary clearance on 4th Jan as cancer was found in the sentinel node. Chemo is probably on the cards too. To think I could have done all this a bloody year ago and saved myself clearance and chemo.

2

Hi Steph

Welcome to the club none of us really ever wanted to belong too but this forum will provide so much support and advice it may just be whats needed on those ‘low days’.

Your history is very similar to mine - just puckering, no lump and a little voice telling me I had cancer which I ignored for 2 months. I too ‘am on the other side of the fence’ although no where near as glamourous as a Nurse, more latterly I have been working as a Medical Secretary but originally trained as a Cardiac Technician/Physiologist so I should have known better as well. Don’t go beating yourself up about it though, we have to concentrate on just getting rid of this. I have had x2 WLE and x4 nodes removed but fortunately all clear. I am ER+ and have just commenced chemo FEC on 17th Decembr, my hair started falling out on Tuesday so I got hubby so shave it all off to a number 2 - I saw your post on cold cap - I was offered it but having had a friend whose been here and done it - her experience of cold cap put me off - but I am a chicken at the best of times so don’t be dissuaded by that!!:slight_smile: Im due to have 18 sessions of Rads after chemo of which I have another 5 to go and Tamoxifen for 5 years. I will be 45 next Thursday (also the day of my 2nd chemo - bad timing but hey ho)!!!

Keep your chin up and use these forums for sounding off whatever, there’s always someone who will answer you night or day.

Wishing you a New Year that can only get better as we move into Summer.

Big hus Leigh xx

3

Dear Steph

I hope you are not beating yourself up too much about not getting into the system more quickly. My advice, for what it is worth, would be to concentrate on getting through your treatment and give yourself the best of care and attention. You may feel at some point you might like to take part in some form of campaign work. Campaign work has helped me greatly in coming to terms with my misdiagnosis. I haven’t posted for a long time because I am actively taking my case to law. GPs are very well protected - even Breast Cancer Care don’t appear interesting in taking note of how many of us have been misinformed by our GPs. I had always taken care of my health and despite three visits to my GP over a four year period, I was told I had nothing to worry about. When I asked if I could be sent for a mammogram, I was refused, being told that as I was under the age of 50 I was not eligible for the NHS screening service. I put myself into the system at age 50 and was found to have localised advanced invasive lobular breast cancer with 15 of my lymph nodes affected. An independent oncologist has confirmed that my prognosis would have been much better if I had been caught earlier + I may not have needed chemotherapy. GPs do not see enough breast cancer to be sufficiently expert to make the decision that some breast cancer symptoms are not breast cancer. Instant referral should be given to anyone regardless of age if they have concerns that could possibly be breast cancer. Whilst I know there are some great GPs who would refer immediately, mine did not and I’m hearing all too frequently about others who are no better. I am particularly concerned for the under age 50 who are not eligible for the NHS screening programme.

Take care and look after yourself.

Jeannie

4

Cleesy B; I wish nursing was ‘glamorous’, lol!
Lucky you’ve escaped lymph node involvement, but I see you are still getting chemo as well? I’ll give the cold cap a go if available, even if it stops hair falling out by 50% it may be worth it.

Jeannie; How dreadfully you’ve been fobbed off! You must have felt so angry and no wonder you’re campaigning to channel that anger in a positive way. I’ve heard a similar story although I’m not completely sure of the facts, of someone else at work going to Gp 1st, as they felt something was wrong with breast, told it was ok. Went 2nd time, mammogram arranged but didn’t show up anything. Went back 3rd time and this time mammogram showed cancer. Maybe GPs should say to patients to come back in a couple of months for a check up or sooner so that the pt. doesn’t feel that they are ‘bothering’ the Gp or that they are neurotic and over anxious.

What were your first symptoms? It really seems to depend on what your GP is like as to when you get mammogrammed. I wished I’d gone to my usual male Gps (I work with them for the ‘out of hours service’) but didn’t and chose the female Gp for the first visit as it was less embarrassing. I think the male ones would have taken me more seriously.

It seems that mammograms don’t show up cancers in the premenopausal woman’s breasts as they are too dense. But what about ultrasound then? I confess I don’t know enough about it. Will have to bombard my breast nurse with a load of questions!

Thanks for your answers.

5

Steph

I’m a nurse too (42) and you’re not the only one to ‘miss’ the problem. I was told I had a cyst, on mammo and ultrasound, in May 08. It grew, but i thought it was still the cyst. Went back in Aug 09 and, hey presto, grade 3 tumour with one lymph node. I’ve had the surgery and now on chemo. I easy to feel daft and that we should know better, but even my GP thought it was still the cyst! Apparently, cysts can mask cancer and the cancer had probably being lying dormant for some time. Anyhow, no point in looking back, just got to face and deal with these things!

Take care

Julia xx

6

Hi rancidtart (I had a laugh at your username!) You’d think the cyst would have been biopsied or aspirated to make sure it was what they thought it was?? You certainly can’t be blamed for thinking it was still the cyst. It seems about the same length of time that I had left mine to fester away. I wonder if it’s possible to sue or something? I bet people would in America.

One of the patients on the ward when I had the WLE and S node removal had had a benign growth removed that was about 4cm diameter. It was found that there was a 9mm cancer hidden behind it on histology so had to have a second op to have that removed and sentinel node. Luckily it was a grade 1 and nodes clear so she got away with just rads, but it makes you think that her ca growth could have got to a large size if the benign one hadn’t have been spotted by her. She was well endowed so I suppose more likely that a large lump could remain hidden for longer.

7

I agree…don’t beat yourselves up and say ‘I should have known better’.

I’d already had bc once in 1993 when a new primary was discovered again in 2004.

I’d naively thought no-one got it twice and that by having it I was sort of ‘vaccinated’ against it in future! In fact, I think (perhaps someone can confirm?), that if you’ve had it once, you are more, not less, likely to get a another primary in the future.

No-one mentioned that, if indeed it was a known fact, in 1993.

I think ultrasounds are more expensive than mammograms…some countries do both, I believe.

X to all

S

8

Hi ladies, just like to say try and let the “I should have” thoughts go. I almost have. :slight_smile:

I was offered yearly Mammo’s after a breast exam when I was 34, as the breast doctor said I had very lumpy breasts, very difficult to self examine, poor family history. I then had my first child, two more and let is slide. I never got any letters to attend and kept thinking I will phone but didn’t.

9 years later,(2004) I didn’t feel well, had breast pain but mostly just tired. Stupidly sat in my Gp’s surgery and asked her is she could send me for some tests as I knew something was very wrong but didn’t know what. She laughed, told me to lose weight, give up smoking and come back when I had done that.

Looked up pain in the breast on the internet, it said not a sign, change your bra type, which I did and the pain stopped. I constantly examined my breasts and about 6 months later found a lump, Gp next day, she found a lump in another area. I knew from her reaction that it was cancer, and even the breast surgeon I saw told me on the day I had my first appointment, he also said it had been there a very long time.

Anyhow got on with it, went to see my Gp for something unrelated about 2 years ago and out of the blue she said, “Why didn’t come earlier, were you scared?”

That small comment destroyed me, silly isn’t it. I did go straight away,the very next day after I found the lump. My mother hid her lump from everyone until it was too late and I vowed never to do that. That comment is the only one that stays with me.

I wish you all well and good luck with the treatment, hope it goes as smoothly as possible.

Paula x

9

Thanks Paula

I suppose I had some blind faith in my original cyst diagnosis. They did offer to remove it but I and they felt it wasn’t worth it. Of course if I had known…

I was also reassurred that I was under the Marsden and that cancer would easily be detected by them. I’m still being treated at the Marsden and still have every faith in them.

I recognise that medicine is not an exact science; it is easy to play the blame game but sometimes these things just happen.

Julia xx

10

Hi Steph
Mine was a slight dimple, couldn’t feel a lump or circumfrence or even any hardness, in fact is was so slight hubby couldn’t see it. I went to get it checked and the rest is history! Thank god the GP sent me for mammo and ultrasound and the appt came through within a fortnight and surgery less than 2 weeks after that. I was 37, no history and it was 1.7cm, grade 3. WLE and SNB showed cancer in 4/5 nodes. Finished chemo on 16th Nov (8 cycles), just had lymph node clearance on 18th Dec (remaining nodes were clear - yipee) and just re-couperating before starting radiotherapy in Feb (19 sessions). Also HER2+ so having Herceptin til Oct 2010 and just started tamoxifen for 5 years. It really is a rollercoaster and sorry you find yourself joining us. These forums have been my life line, just talking to other people at the same stage really helped me. Just take it in bite sized pieces and once you have treatment plan the time really rockets along. Take care xxx

11

hi everyone, i have a similar story except my cancer was initially diagnosed as a fibroadenoma. I am also a nurse and have always checked my breasts regularly. I felt like i was fussing over nothing when initially diagnosed with the fibroadenoma by the breast surgeon, i then spent 6 months thinking something isnt right and then went back only to be told its actually a grade 3 cancer. With hindsight, i would have demanded that it be removed, but hindsight is a great thing. Anyway, now finished 8 cycles of chemo and have a mastectomy booked for Tuesday. I am in the process of sueing the original surgeon, i think though that id just be happy enough to meet him in a dark alley!
take care
anna

12

Anna
good luck on Tuesday - hope it all goes well and that you make a good recovery
love monica xxx

13

Hi Ladies

I wish I could proportion blame somewhere - I originally had a cyst aspirated in 2002 from my right boob - all seemed well until 19 months ago when I felt a hardening in left boob, got referred and seen and mammogram revealed multiple cysts in both left and right and I was told it was something I suffered from - to keep an eye on but all okay. Role forward to this Year and no lumps, no pain, just puckering of right nipple, a little voice telling me it was cancer but it was the discharge that suddenly started which had me straight to the GP on 12th Oct. Seen by Breast Surgeon 19th Oct, Biopsy 21st, told it was bc on 26th, lumpectomy on 29th Oct, seen by Surgeon 10th Nov - no clear margin, 2nd WLE 18th Nov, seen by Breast Surgeon 4th Dec with Oncologist and advised 6 cycles of FEC Chemo, 18 sessions of Rads and 5 years of Tamoxifen best option as grade 3 invasive ductal and no guarantees there were no cancer cells left behind follwoing surgery. Have had one chemo now due 2nd FEC on 7th Jan.
Been a real roller coaster and if I wanted to proportion any blame at all for me having cancer I could not say it was down to the medical profession, it would have to be the previous 12 months of stress due to losing my Dad to cancer, domestic issues with a very unsupportive Mum and sister who even now with my diagnosis cannot ‘be there for me’. I’ve always been seen as ‘the strong one’ as it has always been me who looks after everyone else and deals with all the problems.
Whilst I am a believer that positivity has a place, I cannot help but agree with the article where Barbara writes that the immune system is compromised by stress and when stressed, being positive is incredibly hard. It is with all this in mind I have decided I will not let my diagnosis stress me and have adopted the take one day at a time attitude. I don’t know how I will feel in the next 24 hours but whatever occurs I will just deal with it. If its good - great, if its lousy thats okay too because I see my bc as ‘temporary’ for however long the treatment for it is required and needs to be. I acknowledge my bc diagnosis wholeheartedly and will not be scared by it. In the past 4 years I’ve lost my Dad, my Stepdad and my cousin to cancer - all passed away 6 weeks to 5 months after their original diagnoses’ and its because of this experience I will not be a victim to the disease. It is as it is and I need to just get on with it and live as normally as my body will allow me to each day.
I, too get fed up at times of trying to be falsely cheerful for others so they have all been informed that they just have to take me however they find me - whether it be a good day or a bad day. Being totally honest with ourselves and others, even if that is upsetting for them gives us less stress which takes us back to Barbara’s article.
Thought provoking article and forum - and I’ve waffled :slight_smile: alot! lol

Keep posting everyone - Leigh x

14

steph im also a nurse and midwife and work in sexual health.

i was first diagnosed 3 years ago and was recalled after a suspicious mammo in may 09… at first i thought it was the return of cancer but then talked myself out of that and deluded myself into thinking it was something benign so was in complete shock when they told me it was a new cancer.

part of me also thought i should have known better… but why should we? we are just the same as everybody else and make the same judgements good or bad as anybody else.

the positive thing is you have gone and had it looked into now and are getting the treatment needed.

best of luck.

Lulu xx

15

thanks Monica, fingers and toes crossed.
xx

16

Love hearing everyone’s stories (love isn’t quite the appropriate word is it, but you know what I mean). Thank god for the internet as it makes one feel less isolated and enables you to ‘get it off your chest!’ Lol.

@ Daffy; That gps comment must have been completely crushing. It was really something you didn’t need to hear, esp when she was unsympathetic at the first consultation.
I too thought that breast pain was a sign of advanced cancer, but mine at 1.6cm was beginning to give very slight fleeting pains, so I don’t think ‘pain’ should be ruled out as a symptom of early cancer. Now I’ve had it removed, there are none of these sensations at all.

@ Jayney; You had chemo before clearance? Is that because it was a grade 3 or just your health authorities way of doing things?
I think you’re right about time, etc, I’m sure things are better once the tests are over and you can just go along with the treatment.

@ anna35; Keep us posted on the sueing! Not that I have a case to sue as I could have gone back to GP when dimple more visible as I think now the GP couldn’t see it when I first went. Good luck for Tues too X

@ cleesyB; I too wonder if stress has anything to do with developing cancer or certainly compromising the immune system. I’ve had a viral cold and cough for the past 3 weeks that I couldn’t seem to shake off (on antibiotics for past week as don’t want surgery canceled tomorrow). I’m never usually this unwell so I’m putting it down to stress with all this sh*t going on. It certainly sounds as if you’ve had a fair share of stress.

@ Lulu34; Strange how the mind works with delusions. I cannot understand how I ignored my dimple. Even in August this year I forked out over £600 for a relexology course that I’ve now had to give up, so my mind really couldn’t have been on cancer - could it?

17

Hiya

Yes, I had WLE, chemo, clearance, Rads, Tam and will be on Herceptin til Oct. My result was HER2+ and he didn’t want to wait any longer before starting chemo and “wanted to get ahead of the disease”. Not sure if this is the norm in HER2+ patients, but I suppose it would have been another 6 weeks before I started chemo if I had had clearance after the WLE and he didn’t want to wait.
Keep us posted.

xx

18

Hi Steph

The symptoms I first went to my GP with were swelling and thickening under my right armpit. She said it was nothing to worry about and foolishly I believed her. A year later I went again because I could feel that the swelling and thickening was getting worse and I now had two lumps under my armpit. It was a different GP this time and she said it was the remains of a viral infection and refused me a mammogram saying I was not eligible because I was under age 50. I tried again the following year (same GP) and again was refused on the grounds that my symptoms were nothing to worry about and I was still under age 50 so no mammogram. I tried to go privately but was told I needed a GP referral letter and that put me off. Immediately on reaching age 50 I put myself into the system and was diagnosed with localised advanced invasive lobular breast cancer. All GPs use guidelines and the most awful thing about all this is that many BC symptoms are not in the guidelines. Guidelines are purely guidelines and if GPs only use guidelines, the more unusual symptoms of BC go unrecognised - I feel most Health Professionals seem to think unless it is a lump it cannot be cancer. Both inflammatory and lobular (as in my case) do not necessarily show up as lumps in the breast, and there will be others. GPs must listen to their patient (which mine obviously didn’t) and must use their clinical acumen in conjunction with guidelines. I campaigned for my symptoms to be added to the SIGN Guidelines (SIGN in Scotland) and with great help from a breast cancer campaign group this was achieved in February 2007. I have had huge denial from my GPs and their note keeping was appalling. This has made my case very difficult but I intend to fight on. I feel I need to protect other women from getting the same sort of treatment I had.

Anna - I remember you from some time ago. I hope you are getting somewhere with your case. Have they admitted liability?

Wishing you all a very happy New Year.

Love

Jeannie

19

Hi.

I feel lucky that my doctor did take me seriously just over a year ago. I had a swelling in my armpit which didn’t go away after a couple of weeks, but no sign of breast lumps. My GP sent me to the local breast clinic and even the doctors there thought it would not be cancer as there was no sign of breast lumps. A mammo only showed pre cancer and it was only the biopsy of the lymph node that showed BC. I was diagnosed with BC two days before xmas 2008.

I had chemo to shrink the lymph node, followed by mastectomy (they still did not find a breast tumour) , rads, tamoxifen and now herceptin. Apparently I am one of only a few women where the primary tumour is never found but the cancer has already spread to the lymph system. I don’t think many gps are aware of this, but I am thankful my doctor sent me for tests and that I was sent to Leicester Breast clinic which has a good reputation.

Unfortunately I now have another lump in my armpit which the breast clinic think is due to my operation and might be a haematoma but can’t be sure until it has been scanned next week. I have had another worrying xmas this year but at least I am in the system now and feel I am in good hands.

I think we must tell others to be persistent if they are worried they might have BC.

Wishing everyone all the best for 2010.

Helen x

20

Thanks Helen. I find your response very encouraging. You were very lucky to be sent to your local breast clinic. Just goes to show that the UK is not getting the same standard of care throughout. GPs need to be aware of how important the armpit area can be. I was aware of my armpit swellings etc, and hence my visits to GPs with concerns, but they did not recognise my symptoms. GPs universally need better education and training in this area, need to keep their skills up-to-date and not to languish comfortably in their big salaries. I fear much still needs to be done with regards to the armpit area.

Sorry to hear about your other armpit. I very much hope it is not cancer.

Best of luck.

Jeannie

PS: I would be interested to know if your cancer was considered to be lobular.