Hello
Felt I needed to talk to people going through the same thing as myself and hopefully get some advice from other ladies who are further down the line in treatment than me.
I got diagnosed on Wed with stage 1 breast cancer. They want to do a lumpectomy and a node clearance. After looking on the internet constantly for 2 days i’m not sure about the node clearance. I have read about the Sentinel Node Biopsy but have checked and my hospital doesn’t do this procedure. If I feel that I want this procedure done instead of the node clearance, I know that another hospital in my area does this procedure, but would I have to start from the beginning again waiting to get appointment with a new consultant.
Also, I cannot see breast surgeon until next wed as he is on leave. I will be discussing possibility of partial reconstruction with a latissimus dorsi flap as my breasts are so small that any lump taken from them will show significantly, but to have reconstruction surgery immediately I will have to wait longer for surgery.
Can anybody give me any advice on how long I should expect to wait until surgery after diagnosis.
Hi i was diagnosed on 13th April and had my surgery on 1st May. I had a lumpectomy and sentinel node biopsy
I am luck as have large boobs so lumpectomy hasnt made much of a difference
Hope this helps
Jools
hi im newly diagnosed only since2nd july, since had partial mastectomy done and node biopsy… didnt make much difference as i have big breasts.
now i am awiting results to see if i need axilary glands removed or not.
all i can say is my consultant said some hospitals do node clearance as well as partial at the same time even when they dont no if the nodes are affected or not as it saves getting surgery 2nd time if results come back positive, but he prefers to wait as he said no point in removing something if not neccessary, which is true, my cancer was at stage 3 so i have a likely chance of it been in lympnodes but wont no until monday.
i think you should think about all your opyions even tho ur head is prob spinning or maybe get a second opinion…
also i no they dont recomend reconstruction at the same time as surgery if you require further treatment as in chemo and radium…
if you have good relationship with your gp i wud suggest discussing you options with her/him
hope this helps
and remember we are all in the same boat here to help one another
breda
Thanks for your replies, Hope all is clear for you on Mon Breda.
I just feel I haven’t got time to hang about, I don’t really want to have to start going to gp and getting re-referred to another hospital etc as it all will take time. I just want to get this lump removed as quick as possible, but don’t want unnecessary surgery. Its all too much to take in and all my family are wanting me to just get surgery asap and think about other stuff after.
Maybe I might need to get second opinion.
Thanks for your advice
ourlass
xx
Hi ourlass
I only joined the site last night and already feel like eveyone is rooting for me. I am going in on Monday for a lumpectomy and node removal. I have been told that I will have two incisions and two drains put in afterwards. I will need to wait a little over a week to see whether the cancer has spread. It’s so difficult isn’t it. All this waiting around.
I have been told that my surgery will probably leave a dent and also pull my boob up a little but I think I will wait and see what it looks like first before going ahead with anything
Thanks for your msg Anniversary
Its the waiting around which I am finding the most difficult. I just expected that if you get told you have breast cancer, they would get you into surgery very quickly. I’m not seeing my surgeon until next wed which is a week after getting diagnosed and then who knows how many weeks I will have to wait for surgery. I am contemplating going private now as I am just too scared to wait.
I hope your surgery goes well Monday, I will look out for any new msgs you post when you are up & about.
Hi,
It feels like forever all the waiting, I was diagnosed on the 13th June and 3 weeks later 2nd July had a bi lateral mastectomy and a Node biopsy. i get my results in a few hours. the 3 weeks seemed like so so long but when the nurse said i had only been 3 weeks i could not believe it. the NHS is very good when it comes to things like this but can understand why you are considering private as i did!! but decided it would be no quicker. the node biopsy is good but you do have the worry of waiting for results for a couple of weeks and then maybe more surgery so i think there are pros and cons, give it some time and if they were really worried they would see you sooner, i waited a week between diagnosis and next meeting my consultant. i had a MRI scan in the mean time which should further lumps as a mammogram didn’t work for me as i am only 24.
Give it some thought and i am sure a week wont hurt or if you wanted to change hosps as they should be able to transfer your notes and not take much longer. But we all know how hard the first few weeks are it felt like sitting on a ticking time bomb. Think it has been the hardest bit yet. Also i could not have reconstruction yet as of further treatment eg radio and chemo, i have to wait several months. But they can give you inserts to improve your shape. mine are great and people really cant tell.
also have you got a breast care nurse? mine is great and really good to talk to when you are worried.
good luck
al xx
Thanks for your msg Al, my goodness I thought I was young at 38 to get BC but your’e only 24 and you sound like such a strong person. I wish you all the best with your results today. The waiting around for everything is horrible, I can’t seem to function properly, I feel abit like a zombie walking around in a daze. I have to put on a normal face for my children’s sake but hopefully I will feel a bit better after I’ve got a date for surgery.
I didn’t realise that you couldn’t have immediate recon if your having further treatment, I will know more after speaking to the consultant.
I am addicted to this site, its such a support, I rang the helpline no at the weekend to speak to somebody as I got myself in a bit of a dilema and the lady I spoke to was such a help as everybody on this site is.
Let us know how you get on
good luck
Debs
xxx
Hi ourlass
I’ve only just seen this thread. I had a mastectomy with 15 lymph nodes removed back in 2003. I met a lady on an American website who had a mastectomy with only 2 sentinal nodes taken out. She recovered far quicker than I did as I found it hard to even move my arm to begin with. I asked my surgeon why he had taken them all out considering not one was cancerous. He told me a lot of surgeons think they are not doing a complete job by leaving them in, they want to make 100% sure it won’t come back. I must admit I do feel safer in myself knowing there is no cancer. Although I did go down with brain cancer last year, but that is a different story, nothing to do with the breast cancer.
I also could have had a recon done at the same time, but I wanted to recover completely from the mastectomy before I thought about a recon. I had the recon with the chest expander 10 months later, but it went wrong so I had it redone a couple of months ago. I wanted to go and have it redone last year but went down with a brain tumour and then had to have chemo.
Don’t rush things though, think it all out in your mind. I also panicked and rushed to get the breast off, I did not look into all the options and rushed to a surgeon - when I should have found a surgeon who specialized in breast cancer. The surgeon was a butcher and I have never been back to him since. Good luck anyway Love Roz x
Ourlass,
I had a lumpectomy and centinal node biopsy 10 days ago. I would not have wanted a full clearence! I’m lucky because it hasn’t spread. Mine was a grade 2 and 16mm, so slightly worse than yours. Also I went private for the same reasons you are contemplating. I only had to wait 5 days and had the centinal node thing done. It was worth the £3000 !!!(husbands redundancy money). Good luck whatever you decide! I’m 40 by the way.
JulieX
Sentinel node biopsy is a very specialised ‘newish’ procedure and not all surgeons have been trained to do it. They can test each node as they remove it so they can tell how many to take out.
hey Debs,
i have had my results today and even though they tested my sentinel node during the op and found it clear the results today have said it is not! The sentinel node results during the op are only 80% correct so guess i was the unlucky 20%. I now have to go back in next week to have then lot taken out. Now I wish they had done them all in one go and just had the auxiliary clearance in the first place, but if it has not spread into the nodes you don’t want them taken out for the sake of it. I would still say the biopsy is a good way forward just didn’t work for me. They also said my lump was 17mm and grade 3 which i am told is nasty!!
One thing i am pleased about it that i get to be bridesmaid at my best friends wedding on sat before the op next week.
Just think about the options and as the others said don’t rush into anything you do have time to make life changing decisions.
al xx
Hi
I was diagnosed last Monday. Found out today it is stage 1. I am having the lump removed, but it is at the top of my breast and there is not much breast tissue there, so I am told it will show. I have signed up for the sentinel lymph node sampling. I was concerned about the side effects of removal of the lymph nodes as my job involves a lot of writing. My Surgeon thinks there is perhaps only a 20-30% chance that the cancer has spread to the lymph nodes, so I am taking the chance, whilst recognising that there is a risk I may need further surgery later. It is a catch 22 situation, isn’t it? My op is booked for 6 August but I have said I would be prepared to take a cancellation if one comes up. I thought my husband was daft when he suggested asking about the possibility of cancellations, but the Surgeon says it can happen and that he also has one non breast cancer op scheduled and he may be able to postpone this, so it was worth asking the question.He does reconstruction as well but this was only mentioned if I had a mastectomy, which was an option for me if I preferred .
Julie
Thanks for your comments ladies. There’s so much to think about, Alex, it must be awful for you to have to go through another operation. Thats the only pro I think to have total node clearance, incase it has spread into them and you have to syke yourself up again for more surgery. Hope all goes well for you next week, enjoy your friends wedding!
Julie, that was an interesting point about possibility of a cancellation, I will take that on board when I speak to my consultant.
Julie, are you having a lumpectomy or mastectomy? am I right in thinking your surgeon only does reconstruction for a mastectomy? Are you considering a reconstruction? When I see my surgeon I will be discussing reconstruction with him as my lump is at the top of my breast and I have such tiny breasts to start with that I’m sure its going to look very noticeable.
I feel that I shouldn’t even be thinking about what I’m going to look like after, but I need to have some control over whats happening to me, and me deciding what procedures I have is the only control I feel I have over the cancer.
I’ll let you know what I decide after seeing the surgeon.
Again, thanks for all your comments ladies, it really does help.
Debs
xxx
I think it’s better going to a breast cancer centre of excellence rather than a General Hospital - and this kind of hospital is most likely to have the most up to date treatments and testing, including sentinel node biopsy. Sentinel node biopsy takes only a few nodes reducing the risk of lymphodaema. If you do have clear nodes you wouldn’t need to have any more nodes out afterwards. if not, you would need further surgery but hopefully you won’t need this. As I understand it, removing lymph nodes doesn’t affect your risk of getting cancer later. The nodes are removed to test whether it is likely the cancer is on the move and to help plan later treatment
Mole
asking for cancellations does work.after my WLE and sentinel node op I had to have 2nd op due to insufficient clearance and node involvement. we had planned a break in spain for our anniversary and the 2nd op meant that there wasn’t really enough time for me to recupirate before going. I explained the situation and asked about cancellations and they managed to get me in saving my holiday - hats off to the NHS - they came up trumps
Hi Debs
I am just having a lumpectomy and axillary node sample. However, I have signed up to take part in the new start programme sentinel lymph node surgery. This won’t directly benefit me but it is hoped it will reduce the need for armpit surgery in the future. I am a bit worried about the blue dye they put in and hoping it won’t stain my skin permanently! I am wondering whether to pull out but don’t want to be selfish. I think I need to ask a few more questions before I make my final decision. A mastectomy was a step to far for me at the moment, as this has really come out of the blue and I have had to get my head around it very quickly, (as I know others have had to). As I had no family history, it wasn’t something I had ever thought about before. If there is a need in the future, then I will have to cope with it. I am taking it stage as it comes at the moment.
Good luck to you.
Julie. N
Julie. N.
Hi Julie N
I agree, it sounds like you may need to ask a few more questions before making a final decision. I asked loads, nobody can really decide for you, but like most people I’ve spoke to incl BC nurses and ladies on Helpline on this site, they all say don’t rush into a decision. You need to be as comfortable as you possibly can under the circumstances, so if you need a little longer to think and talk more about it then do.
When I went to see my surgeon on Tuesday to discuss what surgery I would have, it all changed from what was originally decided, so don’t be afraid if you do want to change your mind about any of it. With me, after speaking to him everything just clicked into place and up until then I was unsure about what to have done, but after deciding I feel comfortable with my decision.
Its such a lot to take in isn’t it, and there’s so much to think about, you just have to take things day to day.
I’m sure you’ll be fine and come to a decision what your comfortable with also, don’t think that your being selfish in any way, i’m sure nobody would ever think that of you no matter what you decide to go for.
Take care, let us know how you get on.
Debs
xxx
Thanks Debs
Julie N.