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Newly diagnosed - questions

42 REPLIES 42
SandraSussex
Member

Re: Newly diagnosed - questions

Debbie!
Apparently some NHS authorities would just be using chemo or radiotherapy for the rogue micro spots so at least I am being looked after! I think because I have had lumpectomy and not mastectomy I will have chemo and radio!

Sandra x
Debbie61
Member

Re: Newly diagnosed - questions

Yes, the waiting is awful. My surgeon was on holiday when the path results from my mastectomy came through and so my onc said be good to have onco test as wouldn't be able to have next op until surgeon came back anyway. Glad I had it as it meant i dodged chemo! Xx

SandraSussex
Member

Re: Newly diagnosed - questions

Helena and Debbie!

Thankyou for your messages!

Helena
Yes I am having nodes removed in the next op! Macmillan nurse thinks they may be negative as there were just microspots although it sounds worse when they say it's gone into the vascular!
I am still at stage 2 but because the lump was 3cm and attached to the skin this may have contributed to the spots on sentinel node! The ultrasound didn't show LN involvement! x

Debbie
They did mention possibly doing an onco score! It's just the waiting!!! x

Sandra x
ladybowler
Community Champion

Re: Newly diagnosed - questions

Sandra

 

Glad to hear about the clear margin around the lump, the op on 2 May is that to do the lymph nodes?

 

Just you concentrate on you, if he is a decent man he will, stick with you.

 

Sending you a hug

 

Helena xxx

Debbie61
Member

Re: Newly diagnosed - questions

Hi Sandra. I also had few cancer cells on sentinel node which they hadn't expected to find. About 1.1mm I think (if it had been 0.1mm smaller it would have counted as negative - don't know how that works!). So I did have another op two weeks after mastectomy to take out more nodes - 9 were taken and all were clear. I also had onco dx test and as I had low score I didn't need chemo. In fact my onc also decided against rads, so I'm just on anastrazole for next 5/10 years. Did also have ovaries out a month ago as extra precaution. All good fun! Debbie x

SandraSussex
Member

Re: Newly diagnosed - questions

Hi Flyingarcher!

I am in East Sussex so perhaps further away!

Glad you got your biopsies out of the way! I had 4 seems like ages ago now! It's the waiting which is the worst!

I am back in for my op on 3rd May and then will have another 2 week wait!

So scared of chemo living on my own! I have a fairly new boyfriend but he doesn't live locally! It's whether he sticks around! It's all a mess!

Trying to stay positive is not always easy but I have a lot of living to do yet!

Sandra x
Flyingarcher
Member

Re: Newly diagnosed - questions

Good about the lump.  I completely understand about the nodes.  To be honest, if we are going through this then it's just easier to get the lot done at one time, then you haven't got the 'what if...' Hanging over you.

 

 

i am very near sussex - near a large airport, if you are nearby then happy to meet up some time - not in a mammogram department!!!

SandraSussex
Member

Re: Newly diagnosed - questions

Hi!
Just got home from post op results!

Clear margins on the lump but micro spot on sentinel node!

They weren't quite sure whether to operate again to remove more nodes but I have said I wanted them removed!

Not sure if chemo to follow! Opted for some counselling too! I'm struggling! On my own a lot and overthinking!

Sandra x
Flyingarcher
Member

Re: Newly diagnosed - questions

Now back.  The squishing was painful.  Had five to six biopsies in each side.   Thank you so much for paracetamol tip.  I also took neurofen as well and very glad I did.  Just being a lady of leisure now while son number one bottoms the bathroom (if you want something cleaning then get my son to do it - he's amazing) and husband poddles about treating me like glass - may be playing up to that a bit.

 

the mammo and biopsy team were amazing.  Just wait for the results now but I can't think surgery can be worse than that.

Flyingarcher
Member

Re: Newly diagnosed - questions

Thank you for the tip.  Have done that before eyebrow wax before now!  

Optimissy64
Member

Re: Newly diagnosed - questions

Good luck for tomorow Flyingarcher. Just a tip I learned during countless mammos and 2 biopsies last November was to take 2 paracetamol about 1.5 hours BEFORE the first procedure (nothing with aspirin in though) and it really does take the edge off it. The anaesthetic helps a bit on the surface but the paracetamol helps with the compression. (I learned this years ago when having a leg wax and my lady recommended it, so before all my previous routine mammos I reckoned if it helped with a leg wax it'd help with any anticipated pain, and it DOES work every time!) xxx

Flyingarcher
Member

Re: Newly diagnosed - questions

Thank you!  Just had a lovely fun day out, which was brilliant.  Bit heeby jeebish about tomorrow as it is a standing mammogram plus biopsy and mammo hurt like hell let alone fiddling about with a bloody big needle looking for something tiny.  Hoping they give me loads of local anesthetic!  I think the results take a week but as I'm within a month of noticing something odd, I don't think it is too bad.  This limbo bit is not great is it.

 

big hugs to all the other ladies in limbo and huge thanks to those who have gone through it for your encouragement.

RunningMum13
Member

Re: Newly diagnosed - questions

Sending you both love and luck for tomorrow. Once your treatment plan is in place you'll feel a little more settled and can focus on each step along the way.xx

ladybowler
Community Champion

Re: Newly diagnosed - questions

Sandra

 

🙂 🙂

SandraSussex
Member

Re: Newly diagnosed - questions

Helena

Thankyou for your replies! You are very kind!

Will let you know the outcome!

Sandra x
ladybowler
Community Champion

Re: Newly diagnosed - questions

Sandra

 

Oh yes, it always is, will have everything crossed that is the outcome, it was the same with me, radiotherapy and on tamoxifen now for 5 years.

 

 

SandraSussex
Member

Re: Newly diagnosed - questions

Helena

Thankyou! If I just have to have radiotherapy and hormone therapy I will feel like I can move on!

It is fear of the unknown!

Sandra x
ladybowler
Community Champion

Re: Newly diagnosed - questions

Flyingarcher

 

Hello and welcome.  Good luck for tomorrow will be thinking about and let us know what the outcome is.

 

I can not advise with regard to flying so soon after the op, it would be worth asking your breast care team tomorrow when you know exactly what your treatment plan is.

 

Helena xx

ladybowler
Community Champion

Re: Newly diagnosed - questions

Sandra

 

Thats me all over, I am the one who does all the clear and the hardest thing is getting used to being the one being cared for, but let them in and do stuff for you, just keep thinking it will aid your recovery through your treatment 🙂

 

Helena xx

 

 

Flyingarcher
Member

Re: Newly diagnosed - questions

Hi

 

am off to the hosp tomorrow too.  Have to have further biopsies on the teeny calcium thingies.  There aren't very many and they are only I mm long so heaven knows how they will find them.  My last ultrasound was done with ultrasound and as my lump is 1cm and near the surface, was pretty easy to find.  

 

I'm a bit in limbo at the mo as it could be straight forward lumpectomy plus a couple of lymphnodes (not in them yet) just in case, rads and hormone pills or if calcium thingies are cancerous then mastectomy and chemo.  Just don't know so feeling a bit wibbly.  Surgery is booked for three weeks time anyway..

 

can I ask the ladies who have had lumpectomy and mastectomy - we are due to fly shorthall to Greece for May half term.  I think this will be doable with lumpectomy but will it with mastectomy?  Have three menfolk to lug bags, belongings and not planning on doing anything apart from sunning mysejlf and reading a book.  Doable?   

SandraSussex
Member

Re: Newly diagnosed - questions

Helena

My older pregnant daughter and 14 year old daughter will wait in hospital for me!

I am the one that cares for everyone! I find it difficult to be the one who needs caring for!

Everything is positive! I am grade 2 er+ her2- and ultrasound showed no lymph node involvement! My lump was 3cm but my consultant/surgeon said there were no shocks or surprises when I had my WLE/ SNB! Just hoping it's all clear!

Sandra x
ladybowler
Community Champion

Re: Newly diagnosed - questions

SandraSussex

 

On one of the other threads as have a virtual pair of "tough pants" which we share, after we have washed them!! when one of us is going through a bad time, getting results etc., so I am sending them to you for tomorrow.

 

You will get your mojo back honestly, it is just fear of the unknown at the moment which allows the anxiety monster to take over.

 

Is there no-one that can go with you tomorrow for a bit of moral support, a friend or relative?

 

Let us know how you get on, we will be virtually holding your hand tomorrow.

 

Helena xxx

SandraSussex
Member

Re: Newly diagnosed - questions

Hi All!
I have really struggled emotionally this weekend, post lumpectomy results tomorrow! Being on my own has not helped!

I still have quite a lot of pain which isn't helping and lack of sleep!

I know all will be ok! Just want tomorrow over with!

I am such a positive person but have certainly lost my mojo!

Sandra x
ladybowler
Community Champion

Re: Newly diagnosed - questions

Tracey

 

It is scary when you look at your scar for the first time, no matter how big or small they are.  Is there someone who can be there when you do look so that they can give you a bit of moral support?

 

I have had many ops in my earlier life because I was born with Spina Bifida and had corrective surgery on my leg.  What I was surprised with the scars I had from the op, was how good they were.  Ok initially they look a red and swollen in the early weeks, but t6 months post surgery hey have now settled completely down and are lines that look like creases, sooo very much better than the ones I have on my leg, it just shows how far surgery has come. 

 

Have they said how long it will take for the nerve to settle down, is there anything that can be done to help ease it or is it going to be a matter of waiting? 

 

Helena xxx

ladybowler
Community Champion

Re: Newly diagnosed - questions

Tracey

 

Just to build on what ann has already posted.

 

I have been on tamoxifen for six months now, apart from a lovely hot flush that I get about an hour after I take it in the morning, I have on the whole been fine.  I do get occasional aches but absolutely nothing that I can not manage and they do not compromise anything I do.  I am very much post menopausal and was concerned how it would affect me as I did not have a bad time going through it.

 

I remember when I was given the prescription I got the tablets and then sat and looked at them for a week after reading the "potential" side effects, and as ann says not everyone has any or at all.  I bit the bullet and started taking them.

 

My take is that this little tablet is going to keep me safe, in the same way as the rads have done, so it is a small price to pay.  I have not put any weight on at all, in fact I lost 9 pounds in weight between my diagnosis and op, which I have never put back on. 

ann-m
Community Champion

Re: Newly diagnosed - questions

Hi Tracey,
Just to say that side effects from tamoxifen are not a given, many of us are fine on tamox, or at least find any side effects manageable.
Those having problems will, quite understandably report it. It is a well tried, tested & effective drug.
As ever, the only way to find out how it will be, is to try it.
I was anxious before starting it, but as it turns out, my weight has remained stable & side effects have not been a problem.
take care
ann x
tgregory
Member

Re: Newly diagnosed - questions

Hi Helena

I'm not quite sure to be honest. I need to look at the scar and I'm still in pain. I can't touch across my shoulder blade or upper back and they think they might have hit a nerve during the biopsy.  And I cant decide if I want to take tamoxifen or not due to the side effects especially weight gain!!!

ladybowler
Community Champion

Re: Newly diagnosed - questions

Tracey

 

I had a lumpectomy (WLE) and sentinel node biopsy,  My tumour was 17mm.  The exact expression my oncologist used was that radiotherapy was "belts and braces" so yes it was a precaution, I do recall my consultant saying to me at my results apt that because of the type bc I had I could probably get away without rads but it was a belts and braces measure, so at the end of the day it was a no brainer for me.

 

How are you doing now post op?

 

Helena xx

ladybowler
Community Champion

Re: Newly diagnosed - questions

Diane

 

Helloooo, oh so good to hear from you and it really sounds as if you are doing well 🙂

 

Let us know how you get on Wednesday will be thinking of you

 

Helena xxx

Fuertelover
Member

Re: Newly diagnosed - questions

Hi Helena, Felt exactly the same as you & just wanted it out of my body. I have felt so much better since my op & am now really positive. I go back for my op results on Wednesday & am ready now for the treatment & then to try & put it behind me. Feel very positive now.

i still think the first few weeks after diagnosis are the worst & anyone going through that now to know that it will get better, however low you are now. Hugs to all

 

Diane xxx

 

tgregory
Member

Re: Newly diagnosed - questions

Hi Helena,

I had a mastectomy on the 30th March and sentinel lobe biopsy. My cancer DCIS with micro invasion was spread across an area of 52mm but has all been removed. And the lymph nodes are clear. It is oestrogen receptive so they recommend Tamoxifen but not radiotherapy. if your margins were clear and your lymph nodes did they do radiotherapy as a precaution. 

Tracey

ann-m
Community Champion

Re: Newly diagnosed - questions

As Helena says, Lizzie, I was also told 'chemotherapy unlikely,' but it is raised pending final results from
op.
As you say, there is absolutely no reason not to be positive
x
ladybowler
Community Champion

Re: Newly diagnosed - questions

Lizzy

 

When I had my results and treatment plan, on the sheet that they gave me with it all set out, it also mentioned on there "possible further treatment, chemotherapy" they have to let you know all the options but the consultant did say to me that it was unlikely as they were confident of it being exactly as they had advised me tubular, grade 1 and hormone receptor positive and it was.

 

I actually called mine Mr Blobby as it was the way that I coped with what I was going through and to stay positive about the outcome because he was going to be kicked out of my body.

 

Helena xx

Lizzie
Member

Re: Newly diagnosed - questions

Hi Helena
Thank you fir responding. I have seen you on other links and you are so positive which is great.
Yes, I think I will speak with my bcn - she gas contacted me once but I came away from the conversation feeling more apprehensive than reassured as she,spoke about possible chemo which my consultant did not mention at all.
I am looking forward to the meeting after the op when it sounds like we,shall know exactly what's what. I am very positive and it feels like I've been very lucky that this has been caught early.
Take care
ann-m
Community Champion

Re: Newly diagnosed - questions

hi Lizzie,
Yes, mended & out the other side!
ann x
Lizzie
Member

Re: Newly diagnosed - questions

Thank Meri,
I hope your results are good news. Yes, I am being kind to myself and I am lucky that my husband is very supportive.
I am feeling very positive, yet it's hard not to think about it - tends to be the first and last thing I think about in the day.
Take care
Lizzie
Member

Re: Newly diagnosed - questions

HicKory, thank you for your response - there seem to be so many of us,going through similar situations.  I am guessing my bc us hormone receptive as I have been told I will need hormone therapy.  I am 50 but haven't yet gone through the menopause.

Take Care

Lizzie
Member

Re: Newly diagnosed - questions

Thank you Ann, that's all very reassuring.  I hope you are well on the mend xo

ladybowler
Community Champion

Re: Newly diagnosed - questions

Lizzie

 

Just wanted to welcome you to the site and this lovely forum, you will get soo much help and support from the ladies, as ann has said there is a load of information on the main website page which you may find useful.. Just do not google generally because it will potentially scare the pants off you, there is a lot of misinformation out there, stick to here or the MacMillan website.

 

I did not find out the size of my tumour until after the op, but like you mine was Grade 1, hormone receptor positive.  I was told at my results apt that it was 17mm in size  My consultant and onocologist both told me that it was very slow growing, they got clear margins around the lump and it had not spread to the lymph nodes.  I too had radiotherapy and am on hormone blocker tablets for the next 5 years.

 

Never feel silly, and bear in mind none of us knew much about our cancer we were first diagnosed, it has been mostly from the forum and the subsequent meetings with my bcn, consultant and oncologist that I have found out more about it.  You will become an expert on your particular cancer as you go through treatment!!  As ann said, perhaps give your bcn a call on Tuesday she will be able and very willing to go through what you have already been told, ask any questions you have about your treatment plan and never feel that you can not do so.

 

Sending you a hug

 

Helena xxx

 

 

 

 

Meri
Member

Re: Newly diagnosed - questions

Hi Lizzie, I am nursing my breast after lumpectomy and lymph node removal few days ago. I had stage 2 invasive ductal cancer and DCIS.

 

It really is a huge learning curve re breast cancer but only search what you want to know as there is so much.

 

At the pre assessment for the op an ECG may be done, I had one.

 

But I am 61 so maybe ts nt needed for you.

 

I am at the wiatimg stage for resuts of op, there is alot of wiating to do re BC.

 

If my results are good then I too will start radiotherapy and hormone drugs.

 

The info in the main site is really useful, or just asking questions here I found more personal.

 

Be kind to yourself as no matter how prepared this jurneynis an ordeal. 🙂

Lou_Lou_Georgie
Member

Re: Newly diagnosed - questions

Morning Lizzie. Sorry to hear you are going through all this too. Like you I was recently diagnosed with bc (aged 40), last week I had lumpectomy and sentinel node removed. I didn't have an ECG either as part of my pre-op just height, weight, bp, swabs, bloods and questionnaire. I have been finding out bits about my bc as I have gone along - I now know it is hormone positive, I only found out the size on a letter that was sent to my docs and I received a copy and it was 17x18mm. I have learnt so much about bc since diagnosis from reading on this website and a couple of other reputable websites. The forums are a godsend when you are feeling quite alone in this and you realise there are so many others going through what you are going through. The op was really ok, I had it done as a day case and whilst I was quite sore afterwards i have been ok. Have you been told whether bc is hormone receptive or not? Sending you my best wishes. Lou xx
ann-m
Community Champion

Re: Newly diagnosed - questions

hi Lizzie,
First of all, welcome to the forum.
Your bc diagnosis sounds similar to mine. My bc was stage one, which means there has been no evidence of spread to the nodes - which is good.
Tumours are also graded from 1-3, with 1 being the least aggressive. Mine was graded 2 - intermediate.
Once the tumour & sentinel node is removed at op, it is sent for lab examination & the final results come back about 2 weeks later, when you see the surgeon again.
Radiotherapy & hormone treatment are fairly standard & was also part of my treatment plan.
It might be an idea to ask your breast care nurse to go through things with you, also do look at the main website here, where all aspects of treatment are explained.
Don't worry about the ecg, it may still be done & you are monitored throughout the op anyway, it maybe an idea to ask though.
ann x
Lizzie
Member

Newly diagnosed - questions

Hi All,

I have recently been diagnosed with bc and have a lumpectomy and sentinel node removal booked for a few weeks time.  After that will have a course of radiotherapy and hormone treatment.

I'm feeling a bit silly as I know very little about my cancer - I've been told it is stage one.  I have no idea what size it is - it was very apparent on the mammogram though.

Re my pre- op, I never had an ECG - should I have had one? It wasn't offered or discussed.

I'm guessing my consultant will know more after the opening - I am worried it may have spread.

I feel a bit in the dark are there questions I should be asking now?