Surgery successful .... but I'm still in the dark

Hello:

I’m new to the board so please bear with me, especially if I am posting to the wrong area of the board.

Felt a lump in my right breast towards the end of March and immediately saw a doctor to have it checked out, it was diagnosed as a cancerous tumour and last Monday (18 April) I had a lumpectomy and sentinel node biopsy. Everything went well, I’m home again with little or no pain and practically complete use of arm. Consultant called me on Thursday and told me that my results were clear and the cancer had not spread - I can’t describe the relief. I’m seeing him next week to have the stitches removed but have absolutely no idea what to ask him regarding further treatment, if any and also, what kind of cancer it was/is.

I must admit that when I was told it was cancer my brain kind of shut down, all I thought was cut it out and let me get on with my life. I haven’t asked any questions of anyone, stopped reading about breast cancer online as it was too disturbing and didn’t really think any of it related to me. I have only just read the leaflets that the breast cancer care nurse gave me and now my head is just brimming with questions and worries.

To be honest, after reading some of the posts here I feel something of a fraud to have gotten off so lightly - is that normal?

Thanks for reading and apologies if I’ve gone on a bit.

Ellachen
PS: Happy Easter

Hello Ellachen

Welcome to the forums, I’m sure other users will be along to talk to you soon.
You may find it useful to contact our free helpline on 0808 800 6000, lines will be back open on Tuesday morning (due to the bank holiday) and normal opening hours are Monday to Friday 9.00 – 5.00 and Saturday 9.00 – 2.00.

Best wishes
June, moderator

When you see the surgeon, you should get a pathology report, if it is ready, which may be in a simple form or may be more detailed and technical. The surgeon and a breast nurse will probably go over this with you, especially if any further treatment is proposed.

Some of the BCC booklets, which you can download, have lists of questions you might want to ask, and I think this is true of the one on understanding a pathology report.

Questions you might want to ask are: what grade and stage was the tumour? Is it oestrogen sensitive or herceptin sensitive? What other treatment, if any, will I need? (You might be referred to an Oncologist for this.) No, you’re not a fraud, and we’re all pleased that your tumour was detected early. Depending on the grade of your tumour (how different the cells look compared to normal cells), radiotherapy may be recommended, and the other factors may determine whether you are prescribed other treatment. I had a DCIS a couple of years ago and had a wLE and radiotherapy. A new, invasive tumour which is oestrogen-sensitive means I have to have additional treatment, including chemotherapy and anti-oestrogen tablets.

I hope you need very little further treatment. But don’t feel like a fraud.

Cheryl

Hello Ellachen,

Welcome to the forums and sorry that you find yourself here. Don’t worry about any of your reactions, we all have different ones and handle things differently. Some people need every bit of detail to feel completely informed and others are happy with the minimum.

You say you have some leaflets which you have read, which is good and you could look at some of the publications on this site as well as scouting around the different threads. Call the helpline as well if you want to get some help with the sort of questions that you might want to ask at your next appointment.

It would probably be useful to get some basics down on paper to ask your surgeon, just so you know where you are headed. Also if you can, take someone with you, because as you said, you sort of blanked everything out and you might just hear white noise!! Its useful to have a close friend or partner who will hear things with you and be able to confirm what you might have heard.
Write things down as well and make them repeat things you may not have understood, they won’t mind and remember its your body and life, you are entitled to ask anything you want!

DO NOT EVER FEEL BAD about any part of your dx compared to others. We are all going through it, whatever treatment we are having. You will find help and support from all.

Good luck with your treatment, post whenever you need or want to and take care

Wandyx

Hi Ella, I was exactly like you in wanting the cancer gone, quickly and whatever it took. Once that is achieved the surgeon/oncologist will be concerned to make sure it never happens again. I was like you and lucky that it had not spread but where I live if you have a lump removed you fairly automatically get radiotherapy to make sure they didn’t miss any stray cells. I understand this to be fairly standard. I was stage 1, grade 1 WLE and SNB, no spread but am still having radiotherapy but no chemo. Other ladies with no spread have needed other treatment because of size (stage) or grade of tumour and sometimes because when they test it under a microscope they find it was triggered by hormones and want to block your hormones to protect you in future.

It is up to you what you want to know and not. I want to feel like I understand what they are suggesting I do and why so if it were me, like Cheryl, I’d want to know stage, grade, whether hormone, Herceptin positive and what, if any follo-up treatment they would suggest.

I was marginal for tamoxifen (hormone blocker) but would rather take it as belt and braces. As Cheryl says she didn’t take it after her DCIS. It may be if you are very early stage they would suggest no follow-up treatment but you might prefer to take it for your own peace of mind. Maybe worth having the conversation at least? xx

Welcome, Ella. We’ve been where you are and it completely sucks. Here are some suggestions for you that I was given and am happy to pass on.

Get yourself a little notebook and write down any questions you might think of between now and your appointment with whoever you see next. Leave lots of space between the questions so you can write down the answers! That bit about writing down the answers is important as it helps you to get all that you are told, and it helps to pace the meeting to give you time to soak things up.

You might want to bring someone with you to the appointment. One or other of you could write down what is said, it doesn’t have to be you.

Avoid indiscriminate googling. Stick to reputable sites such as this one, Macmillan, Cancer Research, Breakthrough, and try to avoid single-issue sites as they can be misleading at best and downright wrong at worst - you could scare yourself witless if you’re not careful.

Use the helpline as much as you like. It’s closed now until Tuesday but will be open again 9-5 from then. They’re brilliant, can’t thank them enough.

THERE IS NO SUCH THING AS A SILLY QUESTION. If you think of something, ask it. Someone on here may know the answer, or may be able to direct you to somewhere to get it. They may be questions for your specialists or something we can help with. But whatever it is, it won’t be silly.

Be gentle on yourself. You have had an atom bomb go off in your life, we all know how that feels. There isn’t a pecking order in this cancer thing, so those who have had DCIS, lumpectomy and don’t need further treatment have had as much of a shock as those diagnosed with Stage 4 cancer (i.e. secondaries). Those who will cheer the loudest about your good news are those who didn’t get such good news themselves, do don’t bother with the fraud thing, or the guilt thing, there’s just no point.

Use the forums as much or as little as you need. There are all sorts of threads - specific questions, different diagnoses, different treatments, silly threads (WIND!!! is hilarious!), humourous threads, suggestions for books to read when you’re looking for something to read that won’t fry your brains, people in your area, etc etc. Take a wander round, join in where you feel comfortable, you’ll be given a welcome wherever.

And have lots of hugs from people who have been where you are. The Waiting Room is horrible, but once you find out a bit more about what you have to deal with - as much or as little as you want to know - you will be more able to deal with it.

And finally, lots of good news in what you’ve already told us. By the sounds of it, you have clear nodes, so it hasn’t spread. That’s FANTASTIC. Your surgery was successful so you got clear margins. That’s also fantastic as you probably won’t need any further surgery (but that’s one of the questions you might want to ask). Your arm is back to being your own - brilliant. And we’re all cheering for you.

Hugs

CM
x

Thank you all for your comments and positive thoughts.
Ellachen

Just back from the consultant and am floating on air. Everything is ok, margins and snb are clear. I have to have 4 weeks of radiation therapy and will need to take Tamoxifen. Thanks to everyone for their positive and kind thoughts.
Ella

YAY!!!

Well done Ellachen,

I am on the same follow-up as you, 4 weeks of rads (2 down 18 to go) and tamoxifen which I’ve been taking for a month now. There are people who tell you about lots of side effects of either/both of these but thus far I’ve had no problems and felt no different with either. Hope it is as good for you x

Thanks Mary Grace, must admit am a little concerned about the side effects and am keeping my fingers crossed, particularly as I hope to continue working. Really hope all stays well for you, please keep me posted of how you get on.
Ellachen

Ellachen, we’re all really happy for you and glad you don’t have to go through chemo as well. Good news!

Cheryl

hi ellachen, very happy for you,i have same treatment,rads start mid may.best wishes alex xxx

ps,forgot 2 say.im back at work tues so will let u know of any se,s! none so far with the tam apart from my first proper hot flush,proper sweating episode last nite. can cope with that!! alex xx