Breast cancer

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Feeling confused

Sez2345
Posted by

i  was diagnosed with grade 2 ER + PR+ Her2 negative, and my nurse also mention DCIS. I at first thought they were talking about one lump but turns out I had 3 removed. One was completely harmless but 5cm so needed to come out, the cancer was 17mm and the other one was DCIS. But they never gave me any information on the DCIS. What should I expect when I go on Friday for my results? 

lesleyhelen
Posted by

Hi 

Mine was a very similar diagnosis to yours.  I was told I had a tumour 15mm grade 2 and DCIS as well, but then the surgeon just said she would see if I needed a mastectomy or not.  When she said, yes we can do a lumpectomy, I didn't even think to ask any other questions, I was so relieved.  I found out a year later by paying to get my pathology results that I had the 15mm tumour ER+, PR+ and 2 areas of DCIS ER- and PR- grade 3. (no-one's ever mentioned the specifics of the DCIS to me at all).  The amount of DCIS I had meant with 54mm of 2 areas I had 8cm removed in total.  

As I hadn't found this site by then all I was concerned about was if it had spread to my lymph nodes and it hadn't.  He also mentioned clear margins, which I had to ask what he meant.  They like to get an area around the tumour and the DCIS - up to 1cmm around to ensure that there are no stray cells.  So, that's what they'll let you know: If you have clear margins and if it's in your lymph nodes.  You should have an 'idea' of what they expect from your treatment plan. If they have mentioned 'just radiotherapy' then they don't think that it's spread to your lymph nodes and you'll also be on tablets to reduce the oestrogen for between 5 - 10 years. (I'm on Anastrozole for 5 years - 3 to go).  If they haven't got clear margins they will let you know what they recommend the next course of action is for you.

Good luck on Friday, I do hope you get the best possible news!!!

Kindest wishes,

Lesley x

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Londonmumof2
Posted by

Hi there,

Clear margins are usually 2mm. Thr report should also say if there was any lymphovascular invasion, which is different to affected lymph nodes as ther cancer can invade thr blood vessels directly from the breasts, though its much less common. The ER and PR are out of 8, eg. 7/8, which tells you how strongly they are affected by hormones.

Usually all this is on a letter sent to thr gp, with a letter to you as well.  Why did you have to pay? Did your surgeon not write ti your GP? 

..

Sez2345
Posted by

Thank you for your reply. When I had my  surgery  I had  5 lymph-node is removed, just waiting for results for them as well. 

So the grade of cancer had changed for you after surgery? What treatment did you have ? Thanks Sarah x

lesleyhelen
Posted by

Hi 

Shows how much I know eh?  The surgeon who operated on me mentioned he'd got 10mm around the tumour, but was ok with having 'only 5mm around the DCIS', so I assumed it was normally 10mm that they wanted for clear margins, but he was ok because it was the DCIS. The surgeon who operated was different to the one I saw initially. He went overboard on my clear margins then!!!

I had absolutely no faith in my BC nurse hence deciding to obtain my medical records which costs a minimum of £50 (plus vat I seem to recall) for photocopying.  My BC nurse was awful - they were running an hour late when I first saw the surgeon for my initial diagnosis and was handed over to my BC nurse.  She wouldn't answer any of my questions and it was quite obvious that she was just in a rush to get home as I was one of the last in for the day.  She just wanted to book the appointment and get rid.  Another BC nurse came in the middle and they faffed around with some paperwork so the other one could get home etc.  Then the next time I saw her I asked a question and she fobbed me off with "ask the oncologist when you see him", so I gave up with her and figured I'd rather just have a look at my records directly and work out what they meant from my own research.  Clearly she was cr*p as she didn't tell me anything about the DCIS, so it was quite a surprise to read the pathology results and find that I had 2 separate areas of it and not ER+ as my tumour had been.  I didn't see my doctor about the BC at all - I figured that I was under the hosptial, so didn't bother with the doctors.

Lesley x

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lesleyhelen
Posted by

Hi Sarah

As you can see above my reply to Londonmumof2, then 2mm rather than 10mm is the clear margins around 

Yes, they take out the sentinel lymph nodes during surgery and it depends how many you personally have.  I had 3 sentinel lymph nodes and they removed all those.  If there are any stray cancer cells in the sentinel lymph nodes then this is classed as a 'spread' and will practically guarantee chemo (although it depends on age - my friend's mum aged 80 had cancer cells in her sentinel lymph nodes last year and wasn't offered chemo, I guess they thought the benefit wasn't going to outweigh the side effects / additional % years that chemo could achieve).

I was told 15mm grade 2 cancerous (IDC) tumour ER+ PR+ HER2- at the start and then 'you also have some DCIS' - and that was it.  I only found out a year later from my pathology report the information about DCIS.  The treatment plan is ALWAYS based on the cancerous tumour, so I guess it didn't really matter that much anyway.

I was classed as 'early stage cancer' as the tumour was less than 20mm, so providing there are no stray cells in your sentinel lymph nodes then so will you be - which is very good news.

When I was diagnosed in 2017, the Oncotype DX test was around but barely used.  I gather now, it is used much more frequently.  They grade your ER+ as per said by Londonmumof2 out of 8.  I was 8/8 in the normal testing which meant I was strongly ER+.  The lower the number, the less ER+ you are (which isn't as good news).  The Oncotype DX test is sent to America and is far more accurate and can give different results.  Occasionally if the Oncotype DX test comes back with lower ER+ results then chemo is recommended as the tablets won't have such an effect in preventing it coming back.  I'm not sure if they would have sent mine even now as I was 8/8 on the testing.

So, 2 years ago as my sentinel lymph nodes were clear, they had clear margins around the tumour and the DCIS I was prescribed 5 years of the ER tables when I first met my oncologist post surgery (Anastrozole for me - could be Tamoxifen if pre menopausal or the other one is Letrozole- post menopause) and then 15 sessions of radiotherapy 2 - 3 months after surgery.

As I was so lucky with not needing chemotherapy I literally only took 2 days off work through the whole thing.  I sailed through radiotherapy very easily - just a little bit of blistering under my breast and I've not had any side effects to the tablets.  I drank loads and loads through radio as it was advised to prevent fatigue - one lady I met drank very little and was very badly affected by it - so that is definitely one thing I would say for radio. - drink as much as you possibly can!

Be good to hear your results on Friday and I hope they confirm clear margins and no stray cells in the lymph nodes for you.

Kindest wishes,

Lesley x

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Sez2345
Posted by

Thank you so much, it’s nice to hear people stories that are Similar. 

I will let you know Friday of my results and fingers crossed it will all be good news xx

Sez2345
Posted by

Hi. I’ve had the best results that I could.

grade 2 cancer that hadn’t spread to my  lymph nodes

i am having  radiotherapy on hormonal therapy.

 Feeling so relieved.

xx

Northerner
Posted by

Hi Sez2345

brilliant news so happy for you ! You can now move forward with your plan and get on with your new normal .

Similar to you I'm waiting for review / results next Wednesday . Had my mastectomy on Thursday4th it was only 8 days after diagnosis s I didn't go any further forward than make decision between mastectomy and lumpectomy. 

So have just started to read up on possibilities. No lump for me but 50mm area of calcification was told usually no prob . Then biopsy proved positive . Has sentinel lymph node so understand that prior to op no evidence  so just waiting . 

Im fully expecting the rollercoaster to speed up again on Tuesday / Wednesday but in a weird way looking forward to getting results so I know what I'm dealing with . 

Enjoy the feeling of relief keep posting it helps .

have a good weekend 

love and hugs xoxo

love and hugs 
xoxox
Margaret
Sez2345
Posted by

Thank you, it’s a strange feeling. Wow don’t get me wrong the results are amazing and I couldn’t of asked for better ones. Feeling nervous about my treatment tho.

good luck for your results and keep me posted. Xx

lesleyhelen
Posted by

Hi

Fabulous news  - I am so pleased for you!

If you click on my profile, you will see the timescales I had for the same diagnosis.  I was really nervous about my treatment and if I could tell myself anything it would have been 'no point worrying 'cause what will be will be' and I actually sailed through it with only burns under my breast.  I believe I caused these burns by putting too much cream on during radio treatment underneath my breast and it rubbing on my bra band.  So, although I would suggest loads and loads of creams, ease off where you might get any sort of rubbing.  I had radio at 4pm (ish) each day and I did it first thing in the morning,lunch time, before driving to radio (3/4 hr drive) and then straight after and then before bed.  I drank as much as I could because they recommend fluids to avoid fatigue and I had pints and pints of squash, tea and coffee throughout the day.  Another lady who barely drank anything suffered really, really badly with fatigue.  When they tell you about the potential side effects - don't panic.  I was left breast and couldn't do the breathing technique due to a fixed elbow from a road accident and I was worried about my heart - and also they warn about potential rib issues- they were really supportive and comforting by saying that it just meant they had to do more calculations to ensure that they missed my heart and I just slowed my breathing down.   Although the radio is about 10-15 minutes, some of that is the machine moving around, so when I knew it wasn't beaming, it was then I took deep breaths.   It took about a year for the darker sun tanned skin to ease and look like normal.  It did feel a bit like I was a slab of meat on a conveyor belt as they just pull you about etc to get you in the right position, but as a long as you ignore that it's not at all bad and certainly doesn't hurt.  Just have to ignore the pins and needles in your hands above your head and try and 'drift off' mentally, but it is soon over.  I had a couple of times when the machine wasn't available, so it doesn't matter if your 15 sessions aren't all over the 3 weeks and the odd days off were quite nice to give your skin a bit of a rest and they didn't do it over the weekends either at my hospital.

As I drove myself on my own each day, when I finished my treatment, I asked another lady who was waiting to take my photo of me ringing the bell (the profile picture). She was so frightened as it was her first one, but burst into tears with relief as she said she couldn't believe how well I looked and was so reassured seeing me smiling and being 'perfectly normal' whilst she took my photo and gave me such a huge hug!

I still drink lots and lots as I also think this helps with avoiding side effects of the tablets (including green tea due) and I do more exercise now as this is recommended to avoid bone thinning which can be caused by the AI's - but also have the prescribed VitD and calcium tablets twice a day.  You should ask for a scan to check your bone density (if it isn't automatically offered).  I had to ask for mine.  (My Mum had a hip replacement at 50, so I knew I was at risk of osteoporosis anyway, but was only osteopenic, which they said was 'normal' as a 51 year old). 

There is a radiotherapy thread each month, here's the July one , but you will probably be a later month, so keep an eye out for it when you do start.  In the meantime you can see any hints and tips from the ladies during this (or even previous months).

Best wishes,

Lesley x

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Sez2345
Posted by

Thank you so much for taking the time to reply and it’s a great Relief to actually know what is going to happen. 

I am looking forward to ringing the bell (I didn’t actually know they had a bell).

best wishes 

lesleyhelen
Posted by

Hi

Ah, some places don't have a bell as it's usually donated.  so keep your eyes peeled / or ask if they have one and make the most of ringing it

Creams: I bought radiance cream online (more like a green gel) which was mega expensive and I got through 3 pots of it.  But if you can't get R1 & R2 on prescription from your doctor (I didn't know about it at all but some won't prescribe it due  to the cost), then I reckon I have seen a similar green gel type substance in the high street (Holland & Barrett).  I went in there to get some deodorant which was really kindly on the skin as you're not supposed to use deodorant during radio, but I did and it was ok. The lady who served me suggested it specifically for radio.  so worth asking the shop if they recommend any specific cream/gel for the treatment as they certainly seem to know their stuff there!

Best wishes,

Lesley x

Call Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm  if you need to speak to someone. It's free from mobiles and landlines.

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Northerner
Posted by

Hi Sez2345 results day today . Lymph nodes they took 5 were clear and rest went with mastectomy. So no spread great news

It was HER2-positive so further treatment required ..chemo then herceptin bout Year treatment ....so good but a bit sh*t . 

Will know more when I go see oncologist but think it will be chemo every three weeks at first .Had a few tears but determined to bounce back up .

My poor cancer care nurse finds me difficult because I takes things calmly . Thinks I'm gonna crack one day I just might but for now I need to know everything so I can cope .

love and hugs 
xoxox
Margaret