Hi, I have been reading this forum since Thursday 12th Jan - and can’t believe that’s only 2 weeks because they have been the longest 2 weeks of my life. I am 43 years old and a single mum of the most wonderful 15 year old son and feel like the bottom has fallen out of my world since I was diagnosed with BC. I range from floods of tears to the most intense anger, and can relate to every single emotion that has been shared on this forum.
I went to my doctors on Nov 4th after several MONTHS of discomfort with my right breast. It seemed to constantly itch, feel hot to touch and sometimes the nipple area was so itchy that I even got a hairbrush and used to scratch my nipple with the bristles of the brush !. Then I noticed my armpit felt swollen and painful. I kept researching on google but everything said that Breast Cancer was painless ! On 4th Nov I went to the doctor and insisted that something was wrong - but she didn’t even ask to see my breast. Instead she said it was probably my hormones and setup a blood screening test. A couple of weeks later I went back and she said all my blood tests were 100% OK. She said that hormone levels vary every day and sometimes it’s tricky to catch them behaving badly but she’s sure that was all it was and sent me home !!
I felt stupid that I’d wasted her time, especially as 3 years ago I’d complained of similar problems in the same breast and armpit and that time she had sent me for a mammogram - and it was clear. This time though she didn’t even examine me. So over Xmas it got worst and one morning I woke up and the pain in my armpit was enough to make me cry. I couldn’t reach my arm up without it feeling like the skin was being pulled tight under my arm. A couple of days later it seemed to subside but then came back with a vengeance - as if someone was gripping my underarm area with their fist.
Because of Xmas / New Year I couldn’t get back to the doctors until the 4th Jan and saw a locum doctor who referred me to St Albans breast clinic. On 12th Jan I had the mammogram, Ultra Scan and immediately Core Biopsies on 2 areas of the breast and also on the lymph nodes under my arm.
After the tests you see the breast care doctors (actually she’s the surgeon) and she didn’t mince her words and told me there and then it’s cancer. She also told me that it was her that I had seen 3 years ago and I could tell she was wondering if she’d missed something back then.
I returned on Wed 18th Jan for results and she gave me the pathology report to keep. “Invasive Ductal Carcinoma Grade 3 - with vascular invasion” and also “lymph node showing metastatic carcinoma”. Tests showed it is ER positive (8/8) and Progesterone “patchy positive 6/8” . Still waiting for Her-2 results.
At this appointment she said she wanted to check if the skin of the nipple had also been affected and took some skin samples there and then (painful), but said it was just to decide if she can salvage the nipple when she does surgery.
Mon 23rd I had CT scan from chest to pelvis and body scan but don’t get results till next Wednesday and I am terrified it’s spread. Then to add to the stress I received a letter yesterday that I am “cc’ed” on. It’s from the breast clinic and addressed to my doctor and in it they have said “there is a suspicion that this may be either inflammatory cancer or paget’s disease”.
Nobody had told me that ! I almost collapsed to the floor when I read it and am going mad at the thought of this thing spreading through me as it’s been living in me now for months. It’s already been 12 weeks since I went to the doctor with undisputable symptoms - which have proved positive - and IBC spreads so quickly.
I have rang the clinic today and left a message for a Breast Care Nurse to call but am feeling rather hysterical today, and I’d be so good up until getting this letter.
Sorry for the waffling, but does anyone have any reassuring words ? Is there anyone else that knows something was wrong for several months before they got diagnosed and has found that it hadn’t spread after all ? Also does everyone with Grade 3 IDC also have “vascular invasion” ?
Sorry it’s such a long post, hopefully my next update will be short and positive. Thank you for reading.
Dear angelherts, welcome to the BCC forums
You have come to the right place for support and information,in addition to the support from your fellow users please feel free to call our helpliners, they are available to talk now on 0808 800 6000, the lines are open weekdays 9-5 and Sat 9-2 and it may help to talk things through
I am posting a link to some information from BCC specifically for anyone newly diagnosed, you can read more about breast cancer and find out about further support:
breastcancercare.org.uk/diagnosis
Here is the link to the BCC publication ‘Talking to your children about breast cancer’ which you may find helpful:
Take care
Lucy
Aaaw Angelherts, have a big, big hug.
It makes me really cross when I read posts like yours. I also had pain and was also misdiagnosed for a few months. We are led to believe by the media that BC presents itself as a small pea-sized hard lump and is painless BUT to get any changes checked out by your doctor - and there are so many tales on here of doctors dismissing their patients - but not to have even examined you seems bonkers.
Anyway, that’s in the past now and it’s very understandable that you are angry about it but hopefully they will get your treatment sorted or surgery sorted ASAP.
Many people with lymph node positive BC have a CT scan at the start BUT it is not common to have spread alongside a primary diagnosis but it’s awful waiting for the results. As much as I told myself it would probably be clear I’d also been telling myself that for the original diagnosis - so I know it doesn’t help! However, hopefully it will come back clear and then you’ll know exactly where you stand and will be glad that you have had a full MOT. There are lots of women on here who weren’t given a CT scan and are constantly worrying that it has spread as they have no proof that it hasn’t…
If your BCN hasn’t called you back, why don’t you give the BCC helpline a ring and speak to one of their breast care nurses? They are brilliant - and it doesn’t matter if you start bawling down the phone!
I can’t answer your questions on how many people have vascular invasion. I did. And lymph nodes too. I was also misdiagnosed for months. I had chemo first, then a bilateral mastectomy with expandable implants, then radiotherapy which finished last month and now have ongoing Herceptin and Tamoxifen.
Let us know how the scan results go and what your treatment plan is. Once you’ve got all of that in place you’ll start feeling better as you’ll be more in control and be able to start fighting back!
x
Hi Sandytoes - thank you for responding and it’s great to hear that you are doing so well and have implants already.
You mentioned that you had node involvement and vascular invasion - so did your CT scan and Bone scan come back all clear ?
I have been told that if my CT scan is clear and if the biopsy is negative for Inflammatory breast cancer or Paget’s disease, then they will go straight to Mastectomy and Node removal and have even provisionally booked my slot for Monday 6th Feb.
Many people on here with Grade 3’s and Lymph node involvement seem to be having Chemo first, as you did. Does it matter which they do first ?
Thanks Angie x
hi my name is clair, i was diagnosed with breast cancer stage 1 on fri the 20th of jan and right now i am too going thru every emotion possible anger one minute denial the next not sure of how im really feeling, i am a mum of 4 and this is one really scary place to be,
im going back in hospital for further removal of tissue and i am awaiting results for hormone receptor test and protein test.
I can totaly relate to your emotions and you are not alone
Maybe we can chat from time to time and see how each other are doing.
Big hugs x x
Dear Angelherts
My heart goes out to you and as a 4 year misdiagnosed breast cancer lady, I can relate to your intense anger, hysterical behaviour and how you feel the bottom has fallen out of your world. I had appalling care at GP level.
I doubt if you will be in a position to cope with very much at the moment and receiving a “cc” copy of the Breast Clinic’s letter must seem like the final straw. I’m not sure why you were copied into such a letter when things have not been confirmed. It all sounds very insensitive.
Try not to allow your mind to go into overdrive. I know this is difficult because you are probably thinking about cancer 24/7. If you have something that you enjoy doing, do it more for the time-being. Try to keep a routine, allow yourself “YOU” time, take all the support you can get with people you trust and most of all, take one day at a time. All the tests you are having are the norm for someone who may have lymph nodes with carcinoma. But please don’t beat yourself up, many women have cancer in their lymph nodes which does not go further. I myself had cancer in 15 lymph nodes (Stage 3b) and I’m still here. I remember at the time thinking I would not see it to the end of the year. I will be celebrating seven years on St Valentine’s day. Take comfort in knowing you are not alone and there will always be someone to support you.
Good luck with your results on Wednesday. I know this is a terrifying time for you but you will get through it.
Big hug.
Jeannie
Angelherts I really feel for you. You have a major illness, huge responsibility raising a son on your own (Hang on in, you’re nearly there girl!) and a cr@p experience of the diagnosis process badly handled, just what you didn’t need, all at once. Maybe if I can address the single parent teen bit it will help. I found these resources really helpful for my late teen when I was diagnosed; she didn’t want to talk nipples, boobs or menopause and i guess a young lad is even less likely to, but still desparate to know what’s happening, what’s likley to happen and when, and how he can help. Anyway check them out, see what you think.
macmillan.org.uk/Cancerinformation/Ifsomeoneelsehascancer/Youngcarers2010.aspx
and click4tic.org.uk/Home
There’s a great A5 leaflet “When your parent has cancer” I think it’s a macmillan leaflet I got it at my hospital but its probably online too. You can’t stop him googling, so the best is to make sure he has good quality true info. Eg your chances of seeing him through school, into work and maybe married are very high. And that he knows it’s okay to ask permission at school if coursework is late in etc, that extra help is there for the asking. There’s all these pastoral senior staff just itching to be able to help. And in the big scheme of things, if he takes an extra year at any stage, goes to college at 19 and not 17, it’s not the end of the world!
Most useful thing I did was get my daughter driving, equipped as a young adult able to make a really useful contribution if I need her to. Now I can send her off shopping, or I can go out for a walk and if I get tired I can Ring for a lift!!! Payback time, LOL. Yes I know young lads cost a bomb to insure but it does enable him to be helpful in a practical way if you can afford it (and if you trust him not to drink) Second most useful was to go over her CV and help her with getting holiday jobs, this really helped her separate from total dependence on me and feel a bit that if push came to shove, she could manage.
Don’t answer this in public unless you want but is there likely to be any help from his Dad at all? I managed to keep Ex totally out of it so far, but it hasn’t been easy. But I knew i wasn’t going to get any help, and I didn’t need the extra stress, but that’s just my own position.
Also I strongly recommend you get to see a Macmillan benefits adviser about what you maybe be entitled to, now and in the future. For yourself and for your son. The safety net isn’t what it used to be, but it is there exactly for people like us, so don’t be afraid to claim what you’re entitled to. We used to get that £20/30/40 weekly sixth-form allowance I forget what it was called, it’s gone now, but if you needed that kind of help in order for him to stay on after 16 then there are lots of educational foundations and charities who would be worth contacting. Costs nothing to ask!
Wishing you both every luck
Hello Angelherts
I also had symptoms for probably 6 months prior to primary dx. But because there waa no lump I did not really worry about the itching, and the slight discharge because like you I’d had a “false alarm” a few years earlier, and I think that part of me wanted to just block it from my mind. Finally dx after I found lump under arm. I was grade 3 with lymph involvement. But …that was nearly 8 years ago and despite one glitch 4 years ago I am still here so far… still working and my son who was 17 then is nearly 26 now! My surgeon explained to me that most cancers are so slow growing that they have been in our bodies for years quite often before they are apparent to us. A few weeks will make no difference.It doesn’t have to be bad news because there was a delay. The waiting is always the worst part. But you will get through it, like Jeannie says. All the very best, love Mo x
Grrr … it posted twice so edited out sorry x
WOW - what a wonderful forum. I can’t thank you all enough, although even your kindness made me cry (but then everything makes me cry at the moment).
Jeannie and Moser - hearing about your progress both 7 / 8 years on after having Grade 3’s with lymph nodes has really helped and I might even sleep tonight 
I just wish I didn’t have this extra “might be Inflammatory Cancer” issue hanging over my head. I have posted in IBC forum as well today for more info on that.
Hymil - thanks a million for the lovely practical advice about my son. At the moment he is scarily upbeat. I was amazingly brave and upbeat when I told him and although he started to cry in panic I immediately said “don’t cry or you’ll upset me” and he took it literally and said “oh sorry” and started doing deep breaths to calm himself down. Then he asked “have they caught it early enough” followed by “what about money - how are we going to cope” then followed by “is it hereditary”. It was interesting seeing his thought process.
We don’t have involvement with his dad and haven’t had for 10 years but I asked him immediately if he now wanted us to reconnect with him. He said No but I pushed it and he thought for a while but he still decided that he doesn’t. He doesn’t feel his dad is a great role model (especially when he’s about to do GCSE’s) and that it’s likely to only cause us more stress.
Now he seems totally accepting of the situation but it’s very black and white to him. I will be bald and boobless - tired and a bit sicky sometimes but once treatment over that’s it. At the moment I am happy with his reaction but am already planning on developing his independance. Prior to this I wanted him to stay as my baby forever and dreaded the thought of him ever leaving home !
I will have to see a benefits advisor because I was made redundant over 2 years ago now (and my dad died of cancer the next day). So life has been tough financially with only securing a couple of low paid part time jobs since then. I had 16yrs with a huge corporate company with full perks and private health etc and great sick pay - and now NOTHING. Redundancy money all gone now and mortgage payments been coming out of overdraft that has now reached it’s limit. My lovely bank declined an increase in overdraft but at the moment I am amazingly calm about the dire financial state.
QUEENIE - I am thinking of you and of course we can stay in touch. Try and stay positive as a Stage 1 diagnosis should have excellent prognosis. I worked with a lady who only had to have the lump removed and then rads. She’s all clear and back to work and I keep telling her that I “caught” this cancer off her. She then tells me that she must of “caught” it off the other lady that works in our group who had BC 12 years ago, and then got Lung Cancer - but is still here and working.
Hi angleherts,
I really feel for you. I can’t really add much to what’s been said already, apart from to say that this period of waiting is far and away the worst. Once you’ve got your full diagnosis and a proper treatment plan you’ll feel a whole lot better and clearer about everything.
I was 45 and three days when I was DX in December 2010 with grade 3/stage 3 with 6/12 lymph nodes affected. I’ve had surgery, chemo and rads and just before Christmas I had my first annual mammo with “no changes detected”, so I’m currently in NED-land as we call it (No Evidence of Disease).
At the time my daughter was 18 and had just started at uni and my son was 16 and heading towards AS levels. I have to say they coped amazingly well, but I made sure that their tutors at uni/school were fully aware of my illness so they got all the support they needed. Their friends were also fantastic.
Can I suggest you have a look at this thread share.breastcancercare.org.uk/forum/children-sitting-gcse-a-levels–t31369.html about children taking exams - your son will be entitled to special consideration during his exams but the school need to get in touch with the exam board beforehand.
I really wish you all the very best for your scan results. I know during the waiting time I drank a lot of wine and cleaned the house madly… now due to taking tamoxifen and having insane hot flushes I’ve cut right back on alcohol and my house is a tip - you can’t have everything!
Jane xxx
Evening Anglehearts,
I so hope you have rung the Helpline and spoken to one of the helpliners. They really can support you in so many ways. I too have had a grade three multi focal tumour. The treatment plan for me was CT scan, that was ok so a mastectomy was followed by chemo and radiotherapy. I was a Breast Care Nurse myself for many years. I am aware of many ladies with a similar diagnosis that years down the line are symptom free. It is such a shock at first to have such a diagnosis. It is all so surreal but once the treatment starts confidence in your future will return.
The most helpful thing for me was to join the forum postings of people starting chemotherapy the same month as me. Odd side effects were confirmed as normal etc. We are all meeting up in April …very much ‘virtual’ best friends.
If I can help in any way do PM me
Best wishes and BIG HUG
Cackles
Hi Everyone - sorry for not updating the thread but just been focused on getting ready and recovering from the surgery.
I have posted on other threads so you’ve probably already seen but the great news was that CT Scan / Bone Scan / Bloods AND the tests for Inflammatory Breast Cancer were all CLEAR
I did have Inflammation in the results but not cancerous - so they suspect an infection on top of the cancer, that basically alerted me to the problem. Got those results on Weds 1st Feb and then spent next few days buying nightie and finding someone to have my son etc.
Tuesday 7th Feb had to go to have a wire fitted because the surgeon now wants to try and save the breast with removing lump and mastoplasty (rebuilding the boob with surrounding breast tissue leaving a smaller boob afterwards).
Arrived at 8am, wire fitted by 9:30am and then had to wait for hospital ambulance to transfer me to another hospital for the actual Operation. Was due at this hospital for 11am but wasn’t even collected until gone 2pm ! Was the worst part of the entire process.
Arrived other hospital at 3pm and surgeon was waiting for me and we “under” by 4pm. Finally finished at 9:30pm after 5.5hrs. Woke at 10pm in recovery and was gutted that I’d missed my family who had been waiting and were getting really worried about how long it had taken.
End result is a very pert perfect looking boob - although currently multi coloured. Lymph Node Removal has bigger effects than the boob operation and also drained significantly more than the boob.
Had issues with THREE nurses failing to notice why my drain wasn’t draining into the bottle and was instead leaking from the wound and soaking me in bloody fluid. They changed dressings and my clothes 3 times and still couldn’t work out why I was leaking. Took over 12 hours before “I” realised that the drain wasn’t pressurized anymore (vacuum) and I’d therefore lost a whole day of benefitting from the drain, but thankfully haven’t suffered any swelling or negative effects from it.
Home on Friday night - weekend laying on settee - randomly crying at every opportunity even though I’m not in any real pain. Just feeling sorry for myself.
Now back to the waiting game and hopefully find out on Wednesday if she got clear margins and how many lymphs were infected. Praying clear margins so can move on to Chemo and start crossing off the dates on the calendar.
Thanks for all the support and lovely emails - It’s an amazing site !
Hi Angelhearts,
Just wanted to send a virutal hug. I can relate to you as a single Mum. My boy is 11 in a couple of weeks and my daughter is 14. They seem to be taking it amazingly well but I know their scared.
I hope you recover quickly from your op, and I’m sure we’ll be in touch again.
Sassy xx
Hi Sassy, Thanks for the hug. Sending one back ((()))
My son is coping very well - much better than me - but I don’t think he’s one to show his emotions. Perhaps it’s all the Xbox Games that have desensitised him
I hope everything is going OK for you. I think I need to kick myself up the bum today and stop wallowing as I am starting to annoy myself. Some of the woman on here have it much harder than me and are amazingly strong.
Going to see the Macmillian Benefit Advisor Thursday but she’s already told me that not much I can claim. Unbelievable when I have no other way to pay the mortgage - so looks like Chemo better be kind or we will be living in a box.
At least it’s stopped snowing now !
Well I had the results and officially they have “got it” and therefore no further surgery and moving on to Chemo, however it wasn’t completely clear cut and I didn’t walk out feeling elated in the way I had hoped.
Basically whilst I was under they used a portable X-Ray / Scanner to check that they have got clear margins (which failed for 45 mins and therefore made my Op a total of 5.5 hrs). Anyway they didn’t get clear margins and had to keep going back and taking further “shavings” until they appeared to have taken enough - and those shavings have come back to show that they managed to get the minimum of 1mm around the area EXCEPT for the deep margin (the area behind the lump that goes to the chest wall).
Apparently my lump was deeper than they had expected (why !? - they had plenty of scans etc to see it ?) Anyway, it went right up to the chest wall and she removed all she could without actually taking any muscle away. The “margin” she got from that area was only 0.1mm - so a 10th of a millimetre (can you imagine how small that is ?) and therefore well below their “minimum” margin.
Anyway, I have to focus on the fact that for now they think they “got it” and she did say that the chest wall looked fine - so no reason to think it’s gone there and that she couldn’t take any more tissue anyway. Apparently Chemo followed by Rads will nuke the whole area anyway.
Chemo starts in March - so will move on to the March Chemo posts shortly.
Thanks to everyone that contacted me. This site is my new best friend 