Hi all,
Had lumpectomy 6 June, had results last wed, the tumor was 45mm grade 2 ductal. Now my surgeon says they could’nt get clear margins and I have to have a mastectomy. So confused as at first it was that small they had a job finding it. How can you miss a 45mm tumor? If that was’nt bad enough when I first went they sent me away for 6 -8 weeks because as the letter to my Dr says they thought it was benign. No core biopsy taken just a scan. Gets even better, I went oct 05 with a discharge from my nipple and they said it was nothing. No follow up appointment. Now I thought that this is one of the early signs. Now I am facing them cutting away my boob and i feel lied to and let down. My Gp has contacted BC nurse who has told her that it is confined ducts it has’nt spread outside the ducts but its invasive. What are they talking about? Does anybody know or am I just plain thick?
Hi Essie,
So sorry you have to join this group but you will get lots of support so hang in there…
I was similar to you but over a shorter time span…Just remember that everyone is different but I’ll say how I see it and hope it helps.
I had lumpectomy initially at end of April and they thought it was about 40mm…followup appointment said the same thing with no clear margins and I was also confused until my gp told me that the size is of the “diameter” (so yours is 4.5cm in diameter). I did then have mastectomy on 29th May and biopsy showed that lump actually 10cm diameter so pretty much all of breast! Good news is that this time surgeon says that they have got clear margins (they like to have around 5mm around the lump of non cancerous tissue to have clear margins) so mine is gone and it helps me to think of it that way. Mine did not show up on mammogramme so I feel lucky that they went in there and found it another way. Mine is IDS by the way…
I’m no expert but sound like yours is in you milk ducts and not spread in the breast tissue if they say confined to ducts (if you google DCIS - ductal carcinoma in situ you may find a diagram which shows you the difference).
You will have loads of questions so maybe try to write them down and then call bc nurse yourself - they are very good - and get you answers directly. There are other help numbers on this site which are great for info too. It is a lot to take in and I am just getting my head around it but hope I have been of some help?
I start my chemo next week - we can all beat this horrid disease
I wish you all the very best and keep posting to let us all know how you are doing
Below I have given you the link to BCC’s publication on DCIS which you may find helpful to read. You can either download a copy or order a copy to be sent to you free of charge. You may also find it useful to give the helpline a ring, the staff here are either breast care nurses or people who have personal experience of breast care issues, all of whom will be only too willing to have a chat to you and possibly explain things a little more clearly to you. The helpline number is freefone
0808 800 6000 the lines open Mon - Fri 9am - 5pm and Sat 9am - 2pm.
Hi Hayley,
Thanks for you support,
the thing I can’t get into my head is that when I took a quick glimps of my path report I saw DCIS but when I asked the surgeon she said it was invasive. So I went to my Gp and she rang when she had a chat to th BC nurse who said to her that it was in the ducts and had’nt gone outside the ducts, so I read info on IDC and DCIS and I know the difference so how can it be confined to the ducts but also be invasive as that is were it is spreading into surrounding tissue? I’m still confused. Had sentinal node biopsy and they took 7 nodes and all came back clear. The thing that really makes me mad is that I went 2 years ago with discharge from my nipple and I was told to go away that it was nothing to worry about. All they did was feel and put a bit of paper on the discharge. No scan or even a follow up appointment to check. I feel that the hospital is giving me the run around and that they should have done something earlier, Im only 34 with 2 kids aged 6 and 7. I have rang the help line and spoke to a lovely lady called Adele who helped me with a few decisions because I can never get in touch with the BC nurses at hospital although I have got an appointment tomorrow. You said that you start chemo next week now my hospital say that I might not have to have chemo just go onto Tamoxafen.
I’m scared of the mastectomy but having immmediate (if you can call it that ) reconstruction. I have a deep set fear of hospitals too. My head is in a spin and all I can think of is my kids and hubby as they are so little and we only got married 05, funny thing is they wanted me to go on 30 June but I said could I wait a little longer as hubby goes to vegas 29 June only for a week, and that week seems to be jinxed, I got married the 2 July 05, within days my nan was taken into hospital, the next year on the 29 June my mom got ran over by a bus and they want me to go in that week, and I have a bad feeling about it. So they said 14 July, they said it wont make any difference. may change their minds by tomorrow.
Hope you feeling better and sorry about the offload as don’t have many people who will talk about this to me and the ones
who are supposed to be there (BC nurse) you cant get hold of, doesnt return calls and I don’t trust her to tell the truth.
Speak soon.
Essie x
You might find it helpful to talk this through with one of our trained members of staff on the BCC helpline. You are able to talk in confidence about your fears and concerns and the staff will offer you a listening ear as well as support and advice if needed. The number is free phone 0808 800 6000 and the line is open Monday to Friday 9am to 5pm and Saturdays 9am to 2pm.
I’m so sorry that you are having such a bad time with the hospital support. I have been really lucky on that front. I am having chemo because I had axillary clearance and all nodes were cancerous so to make sure they get it all that is why I have to have chemo. I’m not that old either - 41 with 2 kids of 6 and 5 who have been great considering…and my hubbie has been fantastic - he tends to ask most of the questions at consultations so maybe why I have got so much info on my diagnosis? Who knows!
Sometimes at your stage it is difficult to fully diagnose and that is why we have to go through the stages of WLE etc in order to find actual problem. Sad thing is that every case is different and whilst we can compare notes with everyone, we are all treated differently depending on our diagnosis.
Hang in there love - if it helps, I have kept a file with all my info in it and I write in there as they are talking to me now - If I miss something I ask them to repeat it/ spell it etc. I can then look back and try and get my head around things that way.
Hi Haley,
I’m in Staffordshire, Been to hospital this morning to try to get answers.
They have said that I have IDC, they said they couldnt get clear margins as there were a few cancerous cells in with healthy tissue so my best option is to have it off, no lymph nodes affected and no signs of it in vascular. But still want to do MRI scan, All booked in for op 14 July made sure I was first on list, Having a skin saving mastectomy with the expander implant put underneath the muscle. Surgeon said I may be out the next day. She will discuss chemo after and poss rad then tamoxafen. Still confused but hubby seems to understand better than me, Asked for all copies of my medical notes too so I have the full picture.
Sorry, been off line for a few days - a friend came to stay and I had over done it - spent most of the weekend with my feet up (nothing to do with the wine!!) :-0
Wondering how you were doing?
I’ve got my first chemo on Thurs - ooooohhh…bit nervous but wanting to get started
Feeling a bit low, still no answers from hospital just a letter to say when and what time to come in, does’nt help that the hubby went to Las Vegas on Sunday and I’m left holding the babies.
On sleeping tablets now cause I can’t sleep or eat. Going to see my GP tomorrow, get more tablets and quit smoking patches as doing what the surgeon said and trying to give up again. Trying really hard but finding it terrible, as if I don’t have enough to cope with without trying to pack in the ciggies.
Still running around in circles trying to get answers, and can’t get them. Keep dreaming that I’m gonna die.
Had kid’s sports day last week, ok while I was there but when I got home I just broke down, my mom had to come up to me. Had a few stupid thoughts too!
Had a better day on Friday though, my daughters dance presentation, even gotup and had a dance! My friend turned round and said if I get bigger boobs than she has she wants hers doing cause I can’t be bigger than her.( She’s get married next year in Scotland) I said I’m not going too big as I’ll get black eye’s doing the highland fling:)
Just feel so isolated.
Enough of my moaning.
So how many bottles did you get through…???
I’ll be having a glass tomorrow as it is my wedding anniversary, 3 years married but 16 years 3 months together. Told hubby I’d better have a decent pressy from Vegas.
Hiya Essie,
Happy Wedding Anni - have a glass on me love.
Hang in there on your diagnosis, sometimes they need to check everything. My boob was sent off to the lab after op and then I got lots of answers which then set the scene for my treatment. I did feel a lot better after mastectomy because they had taken cancer away and the worry of it spreading had gone. I’m now at the “mopping up” stage with the chemo and rads. Consultant said he wanted to give me the best possible chance of a full long life so am being blasted with everything - I see that as positive because because he seemed positive and these guys see this all the time. Remember, you are still in diagnosis mode whereas I have moved to treatment mode. Hopefully once you have full dx then things will be clearer.
So sorry you are not sleeping, I remember that initially, walking round the garden at 2am smoking a cigg! (yes, me too!). Have a look at the chat on “newly diagnosed - guilty about smoking”. I promise you will feel better and not alone as there are quite a few of us smokers. Don’t beat yourself up about it, there is enough shit going on without that right now. You will give up when you are ready so maybe now is not the right time?
Use your mom if you can, she will want to do as much as she can to help you (imagine how you would be if it was your daughter!) and you should let her help. My mums not around anymore bless her and so I have the mother in law (not good, believe me)… I also notice you making a little joke about black eyes - keep it up love - the more you can laugh at this cancer the better you will be able to beat it
Mmmmm, got through 1 bottle of bubbles (my fave) and 1 bottle of wine. Considering I have not really had a drink since dx it didn’t take long to feel squiffy, but boy did I have a nice time.
Hi Hayley,
Hubby back on Monday about 4pm but he did ring last night, sounds like he’s less stressed. He’s been stressed at work as he is in the building trade( he makes breaze blocks) and he’s a supervisor and with all this as welI I thought it would be best for him to go to Las Vegas on a Stag week before the s**t hits the fan.
Went to the Drs again yesterday saw a different Dr who says they are doing everything they can at the hospital for me, She gave me diazapam, sleeping tablets and patches (cost me a mint in charges) Told me that she would ring the BCN to see if I really needed a pre-op as I had the appointment. She rang later in the day to tell me not to go for pre-op but to have my bloods done at Drs today and that I would not get an MRI till after the surgery. What a waist of tax payers money if it’s in the other side they could just get rid of it in 1 op instead of 2. Taken a diazapam today a boy do they work! Felt stressed less, kids played up and normally I would flip but I did’nt.
Been playing on my step-dad’s DS a lot at my mom’s so my mom’s gone and brought me one to keep me busy (I’m spoilt) Did the brain train and got the brain age of 80.
Now just a bit worried about what I will look like, I lost 2 stone in the past 18 months and half a stone since this started so my boobs have gone from a C to a B and I breast fed so not much there, dont want to look odd, would rather have both done with implants, don’t want to look like Jordan though just the same size as I was about a C.
Enough about me , how did chemo go? Are you feeling ok? Are you able to have it at home as I was told by a lady in the waiting room at my hospital that I can have it at home if I want as she has.
Get some rest!
Hi Love,
As you know I had single mastectomy and yes, do feel a little wonky but they got it all out so got to be a good thing. Have you had a mammogramme (spelling?) because if so that would have shown up anything dodgy. My other boob showed up ok on that so maybe thats why?
Hubbies need their time too. Mine is a golfer (not for a living) and once he has put kids to bed he goes up the road to “hit a few balls” which is his fun time.
Chemo was OK actually, not feeling too bad - long may it reign…I will keep you informed lovely
You take it easy too, remember, hang in there love and keep chatting to people on here - it really helps
Hayley,
I had a scan and when they did that they Dr said that it was’nt the lump he was concerned about it was the tissue around it so he checked the other and said that it was within normal peramiters for myself. After that he said he thought it was my hormones and to come bak in 6-8 weeks, and don’t worry as if he thought there was something wrong he would not hesitate to stick a needle in me. (He was sooooooooo wrong) Went back after 6-8 weeks and they did core biopsy and a week later they told me I had cancer. They took me for a mammogram and two days later the nurse said it was that small they could not find it. After the WLE they told me that they could not get clear margins as there were pre-cancerous cells in there so just makes me wonder.
Your hubbies a mad man! I used to work in a golf club, Come rain,shine and even snow they would be there at 6.30am. Can’t see the appeal except there were a few nice looking pro’s (proffesionals) in the shop. I found out after I left that one of them had said if I was’nt getting married and was single he would have made a play for me. He was cute too!
My uncle plays at the same golf club and thanks to my old work friend this guy now knows about the BC. So I sent a message with my uncle that yes it was true and I am gonna look like Jordan and if he’s good I’ll show them to him.( Not Really!!!)
Thanks for your support, you really make me feel a lot better and mor positve about everything.
Wish you lived nearer so we could meet up when we are better.
Just a quick note to say all the best for tomorrow…Really hope all goes well for you love. Let me know how you are when you get a chance to log back in afterwards
