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Very Scared

22 REPLIES 22
poemsgalore
Member

Re: Very Scared

Another point Glenlass, the size of the lump has no significance. It is the grade that is important.
Here is a link to the Macmillan site, where the staging and grading is explained.
http://www.macmillan.org.uk/Cancerinformation/Cancertypes/Breast/Symptomsdiagnosis/Stagingandgrading...

Best wishes
Poemsgalore xx
Lulu34
Member

Re: Very Scared

Hi Glenlass

glad things havent changed much and no nasties elsewhere. My first cancer was grade 1 and stage 1 at biopsy and was staill grade 1 and stage 1 on final pathology.... the grade rarely changes from a 1 to a 3 but can go one grade either direction when they look at all the cancer cells. If ou are stage 1 that means its small with no node involvement, the smaller the tumour the less likely there is to be spread to the nodes and the US they did gives a good indication that the nodes are clear but the SNB gives and even clearer picture so hopefully you will stay as stage 1 after surgery too.

I had a WLE and SNB and like some of the girls i had some cancer cells near the margin so needed a further op a couple of weeks after the first one.. This happens in around 1 in 5 cases following WLE.

if any cancer cells are found in the SNB you normally need another op to remove all your nodes as that helps prevent cancer cells spreading elsewhere.

if you have affected nodes, a grade 3 cancer or are herceptin positive you may possibly need chemotherapy but most people dont need chemo.

i was in for day surgery each time but i had post op nausea and vomitting so was too poorly to go home so i would advise an overnight bag just in case. But most people are fine afterwards just GAs affect me badly.

BTW after the SNB you pee and poo blue for a couple of days, you can even look a bit greyish blue and your boob can be smurflike for a few months but fades eventually.

good luck with surgery hope it all goes smoothly for you.

love Lulu xxx
Maryland
Member

Re: Very Scared

Hi Glenlass.......the path results from the biopsy will give an indication of the grade i.e. differentiation of the cells, but as the sample taken is quite small, there is margin for error. Biopsy grading compared to tumour removal grading accuracy (according to my research last year) is between 55% and 89% (the higher the grade, the more accurate the pathology). G1 is most like normal cells, G3 most differentiated. After the WLE op the whole tumour is analysed, and the final grade is given. It is highly unusual for the grade to change by more than one grade.

If your nodes look and feel clear, there is still up to a 30% chance that the sentinel node biopsy will show stray cells...again only determined under a microscope. Depending on your hospital, this may be carried out whilst you are 'under'.

The 'stage' is determined after the op, and if you look on this site's publications, Cancer Research or MacMillan for breast cancer staging this may be helpful. The stage relates to the size of the tumour, whether nodes are affected etc.

When removing the tumours, the surgeon needs to get a 'clear margin' i.e. enough 'normal' tissue surrounding the tumour to make sure it is all removed. Whether s(he) is able to do this will depend on the size of the tumour, size of your breast and the position of the tumour. Be assured that research shows a WLE + radiotherapy has the same survival stats as a mastectomy. Each of us responds differently to treatment....my WLE/SNB was day surgery and I was advised to take 2 weeks off work, and not to drive for a week. This worked for me. Most important is to do the exercises recommended so that you heal properly and regain strength after the op.

Chemo is usually only recommended if the tumour is G3 or very large in relation to breast and needs to be shrunk, if nodes are affected, if you have vascular invasion (cells found in blood supply to tumour) and some other instances based on individual Onc's preference for treatment.

Hope your treatment plan gets sorted this week and all your questions answered. There is a publication, I think on this website, which suggests the kinds of questions to ask. Take someone with you to write things down, as it can all be a bit of a blur....however you will get used to the lingo!!

It is a lot to take in, but try (although I know it's hard) to live in the moment, one step at a time and bring yourself back from the 'what ifs'.....worry is like a rocking chair.....moves forwards and backwards but doesn't actually get you anywhere 🙂 you take care x

maggiemay22
Member

Re: Very Scared

Sorry you've joined our not-very-exclusive club Glenlass.

I'd try not to worry that the doctors haven't told you the full story. I was told that mine was Grade 2 after my biopsy and it stayed at that grade when I had the lumpectomy. My hospital doesn't use staging but, from what I've read, stage 1 is when there is no node involvement and the tumour is less than 2cm so that would seem to fit your diagnosis (and mine 🙂 ) Things can change when they operate and test in the lab, like poemsgalore says, but don't worry about that now.

I was told I would be having a wire-guided WLE as my tumour was quite small but ,when it came to it, I had another ultrasound and the radiologist put marks on my breast to show where the tumour was.

Like Katykookabura, I also had 2 WLEs (4 weeks apart for me) because the surgeon didn't get clear margins the first time. They were both done as day surgery and the staff were lovely. I found the SNB to be more painful than the WLE, probably because of where it was.

You'll find there's lots of waiting involved in cancer treatment. I'm now waiting for my oncologist appointment and the results of blood tests and then I'll be waiting to start radiotherapy.

Don't worry about contacting your BCN...that's what they're there for.

(((hugs))) Maggie xx
Guest user
Not applicable

Re: Very Scared

Dear Glenlass,
Just wanted to send you some positive vibes and tell you that the people here on the site know all about scary diagnoses and worrying waits and will all be sending you positive vibes too. Just take a day at a time. Write down any questions you have when you think of them so that you can ask your consultant at your appointment. I went armed with a small notebook! Once you have your treatment plan and timetable, things will be easier.
I'm one of the Amazing Augusts, into chemo now, having had a mastectomy and auxiliary node clearance in June. I have found this forum useful, supportive, inspirational – I hope that you will too.
Take care,
Penn
Guest user
Not applicable

Re: Very Scared

Thanks very much, it really is a lot to take in. I will be asking lots of questions next week that's for sure.
Guest user
Not applicable

Re: Very Scared

Oh, sorry I thought they said Stage 1 .
The Doctor definitely said that I would not require Chemo due to the size of the lumps and the results of the biopsy. Maybe they haven't told me the full story - which concerns me a great deal. I think I have been a bit naive believing what he has said.
Katykookabura
Member

Re: Very Scared

Hi Glenlass, I had 2 wide local excisions because when they did the first one and after they sent it to the lab it showed they had not got it all out, so went back two weeks later and had repeat op.
This might not happen to you but as Poemsgalore says best to have all the possibles so you can prepare yourself. This going back is quite common it seems from the posts on here . You have to wait at least six weeks before you can have rad treatment to let skin heal and after two lots of ops I then waited 8 weeks as the radiotherapy unit was busy!. After your ops you might get a build up of fluid under the scar and this is normal also. It disperses by itself but was strange as I used to make gurgling noises when I moved!!

Before your ops to help the surgeon you will probably have wires put through breast to mark the tumour site. This sounds horrendous but they give you local anaesthetic and then they tape wires to you ready for theatre. Then to help the surgeon find your lymph nodes they inject a blue isotope( radioactive) dye into the breast through the nipple. Now as awful as this sounds it was all not as bad as I thought so be reassured it is necessary for the surgeon to do the op.

They take a sample of nodes , mine was only two to check for cancer cells to see if cancer has spread.

Use the nurses on this site to ask questions, they have time. It is worrying that nurses are too busy to talk and support you at this very difficult time. My breast care nurses were busy also, but did call me a few times during the early days .
Untill you have your ops you will not know exactly what you are dealing with and your treatment plan. This will be a testing time. Waiting in between each stage is the worse and you might have read that on the various threads on this site.
Stick,with this site and the McMilian one for sensible answers.
Try and keep positive and busy you will get through this I am sure, best wishes, Katy.
poemsgalore
Member

Re: Very Scared

Hi Glenglass

Sorry to be the bearer of bad news, but until you have had the WLE and they have examined your 'lump in the path lab, they won't know what grade it is. Quite often a grade 1 (which is what I assume you meant instead of stage 1) turns out to be a bit higher. If it is grade 3, you might have to prepare for being told you need chemo. Hopefully it won't come to that. Good luck for your WLE, and hoping things turn out just as you hope (RADS and hormone tablet).
Sorry if I've worried you, but it is best to be prepared for these things. Sending big hugs.
Poemsgalore xxx
Guest user
Not applicable

Re: Very Scared

Thanks Loulabell xx
Guest user
Not applicable

Re: Very Scared

Hi Glenlass, sorry to hear you diagnosis, but it all sounds very postive (as much as a cancer diagnosis can be!) generally a lumpectomy does tend to be day surgery, recovery is generally a couple of weeks. I had a lumpectomy and SNB in May and I found it was actually the recovery from the SNB which took longer, but as they have already told you no lymph involvement then you may not need this. You will need to rest and take it easy after surgery - no heavy lifting or housework!! I am now just about to start radiotherapy and have started on tamoxifen, it has been a bit of a rollercoaster, and frustrating at times. Waiting for test results and appointments to come through seemed an eternity, but this is a great site for support. Good luck xx
Guest user
Not applicable

Re: Very Scared

Hi,

Well that's me finished all of my tests now - organ ultrasound, chest X-ray and bone scan.
The Doctor who did my bone scan today was kind enough to tell me then and there that nothing untoward showed up so I just have to hope that the results for the other 2 tests are ok. I find out on Tuesday whether the original treatment plan (lumpectomy, rads, hormone treatment) will still proceed.
What can I expect from the lumpectomy? Does it take long to recover from the surgery?
Do lumpectomies normal get done as a day surgery? I have to have 2 lumps removed but would be keen to go home on the same day if possible. It's silly but I have a phobia of overnight hospital stays due to a bad childhood experience.
I would appreciate hearing others experiences of this xx
Jo43
Member

Re: Very Scared

Hi there Glenlass , it is scary for you hun and alot to take in.
Right now your mind is proberly working overtime and thinking ahead.
My advice to you would be to take each stage as it comes and not to google too much.
Sounds like it has been caught nice and early so take that as a possitive if you can .
You have come to a good forum for support 🙂 so keep posting and we will all try and get you through this difficult time.
I had 2 lumps in 1 breast and 2 positive lymph nodes, grade 3 tumour and had lumpectomy back in june so we all understand your fears sweet.
Sending you a ((((HUG))))!!!!
Jo xx
Guest user
Not applicable

Re: Very Scared

Test results confirmed I have stage 1 cancer in both breasts. Lymph nodes are clear.
Waitiing on a date for my bone scan, if the results are ok I will need a lumpectomy and then radiotherapy.
Just trying to take it all in at the moment.
Guest user
Not applicable

Re: Very Scared

Thanks for all of your kind messages.

I have to be honest and say that the panic has really started to set in for me now - not sleeping and feeling sick to my stomach. I have not told my boys anything as i dont want to worry them - there isnt any point telling them anything yet anyhow. What frightens me most is what they will have to go through if I do have cancer. I was 27 when I had to go through it with my mum but the are still relatively young.

Maybe I am putting the cart before the horse but I am now 100% convinced that the news will be bad - I have no idea how I will react tomorrow. I am thinking of getting my husband to go in to see the doc while I stay in the waiting room 🙂

Sorry for moaning guys, I need to give myself a stern talking too.
maggiemay22
Member

Re: Very Scared

Good luck for tomorrow Glenlass. Maggie xx
Bowl_of_cherri
Member

Re: Very Scared

Glenlass just wanted to say your in my thoughts for tomorrow, , some very good advice on here from the other ladies. Take care Kathy x
Katykookabura
Member

Re: Very Scared

Hi Glenlass, sorry you find yourself here but this website is good for both information and support and tips from the other ladies who are at various stages of the "journey" to beat cancer.
As Lulu says it might help to prepare for the worse which is what I did.
I told my husband the same and said " this is looking serious so I think we should prepare for the worse news". Whilst it is still devastating when they tell you I had a feeling it was cancer. Not sure why but when the nurse told me I was OK and just wanted to know what my treatment plan was as it was right on Christmas and I knew most of NHS closes except for emergencies and was more concerned I was going to have to wait for my operation.
As I expect you may have already read on other threads the general advice is not to google but stick with this website or the Mac MillIan one as they are most helpful and some of the google stuff is scary!. You can speak to the nurses on here or your breast are nurse almost anytime to get support and questions answered.
Obviously it is a stressful time and the waiting bits in between tests and operations is the worse as you will feel out of control . Once you know your results and what your treatment is( if any of course) then it gets better at least it did for me. Write down many questions before you go and take someone with you as that extra pair of ears picks things up you might not as you will be so stressed. Also nice to have someone for support.
Try and keep busy and positive . We live in a time where treatment for cancer has never been better and I found that reasurring . Take care, let us know how you get on, Katy.
Lulu34
Member

Re: Very Scared

hi glen lass

the 4 out of 5 refers to a scoring system for whether something looks normal on mammo or US or feels norml, or nothing can be felt which is a 1... to something which looks and/or feels malignant (cancer) which is a 5.... 4 generally means its suspicious and could be a cancer or pre-cancerous condition which would normally require treatment.

if they were certain it was cancer you would have been given a score of 5.

prepare for the worst but hope for the best is my motto.

good luck x
Guest user
Not applicable

Re: Very Scared

Hi
Thanks for your good wishes.
I have just rang the Hospital Help Line and spoke to one of the BCC Nurses. She berated the Doctor for what he had told me and encouraged me to ask loads of questions next week - I am kicking myself for not being brave enough before.
Roll on Wednesday.
Rara
Member

Re: Very Scared

Hi sorry you find yourself in this scary situation, I can't help re the four out of five thing but can you ring BCC helpline?
I was as scared as you are, back in feb. They found a second lump when I was there too. You need to talk to someone about your fears. Until you get your results, there is no point me speculating......I hope they are favourable.
good luck and keep us informed please
Boxofrogs
Member

Re: Very Scared

Give the helpline a call. But my understanding is that the number is a standard scale the radiographer and or doctor use to determine what to do next ie 1 do nothing (my words and to be taken loosely) 4 do a biopsy. Which is what they have done. The number is no more sinister than what they have already told you...that they want to find out more about the lump because they are concerned...it is scary but the sooner you know the better.
Guest user
Not applicable

Very Scared

Hi everyone
I found a lump in my left breast about 3 weeks ago. I don't check my breasts regularly but I know that it hasn't been there for a long time.
My doctor referred me to the breast clinic on Wednesday and I had a mammogram and an ultrasound.
The doctor then examined me and said the lump was suspicious and had been marked 4 out of 5 - no idea what that means.
He said that worst case scenario it could be breast cancer but the lump was small. He told me to try not to worry and then he sent me back to xray for a core biopsy.
They have also found a lump in my right breast which frightened me even more because I can't feel it.
I am due to get my results next Wednesday.
My mum died of ovarian cancer and I know that they don't do these tests for nothing, I am so terrified - I am sure everyone who goes through this feels the same.
Should I be preparing myself for bad news? I am trying to be positive about this but it is very difficult.
If anyone can give me any advice on what 4 out of 5 means that would be appreciated.
Thanks x