My sympathies are with you, regarding the way they are drip-feeding you information. Some medical people can be very poor communicators and assume we are already up-to-speed with current practice. But I think bc's a bit like that, especially these days, when there are, fortunately, such a variety and range of treatments available. A far cry from when there was just very mutilating surgery and a blast of radiotherapy to follow.
Just want to add a bit to what CaroleD said about lymphoedema...
While it's true that it is not a foregone conclusion that you will develop lymphoedema - the majority don't and it's also my understanding that sentinel node removal on it's own is less of a issue regarding this, anyone who has had any kind of trauma (and this includes irradiating remaining lymph nodes)to their lymphatic system is always at risk even tho' that risk may well be a reduced one.
If not being allowed to do certain things is bothering you (do you mean how to use your arm?), there are usually good reasons for this. However, if you are just being given a shedload of instructions with no explanations or support, I'm not surprised that you are extremely angry. If your bcn is any good, it would be worth buttonholing her to get some detailed answers - that's a key part of her job - or should be. If not, Carole's suggestion about the McMillan site sounds good - and there's always this site, too!
Hope you are soon being kept better informed.
Another control freak here! I would echo everything Gennie says about getting clued up on the next step and that seems to pay dividends when you are talking to the surgical and medical teams. For me, that helps me feel that I have some control over things. I then prepare a list of questions and leave gaps to fill in the answers. I asked for a copy of my pathology report.
Like you I am 51 and dx following recall on my first routine mammogram. I had the same surgery as you (WLE & SNB) and I start radiotherapy next week. I've now been taking tamoxifen for 3 weeks I was fortunate in that when I went for the recall appointment they told me they were fairly sure it was bc and what the likely treatment would be - and they were right. I'm still waiting for the result of the HER2 test, so that may change things. My breast care nurse has also been great at answering questions.
I felt really good after surgery, but the wait to start radiotherapy started to get me down because I didn't feel anything was happening. The support on here is great whether you want to ask questions or are in need of some moral support.
Hi Helen, from one control freak to another I'm finding the hardest thing (now I've over the initial shock) is that other people are making decisions about my life and telling me where I will go, what will be done and when. I rearrange my life at their convenience and do as I'm told and it freaks me out!!
I agree with Carole. Get yourself clued up a bit more on the net if the lack of information is upsetting you. Don't read too far ahead or you'll scare yourself silly, but just enough to make yourself aware of what's coming up in the next step of the process. I saw my Oncologist about 10 days ago and was asking questions and making comments such that she said to me "you've obviously been doing your homework" and she was suddenly a lot more forthcoming with details. I think the more clued up you seem to be the more the medics are likely to tell you in a way. For some people it's so overwhelming they can't take it in, so I think they tend to just go over the bare minimum as their standard approach - which just isn't good enough for the control freaks of this world!
Keep talking here, there's bound to be someone who can answer a lot of your questions but do contact your BC nurse if you feel you need more answers, that's what she's there for. Meanwhile we're all going through it and we'll all get through it together.
Sounds like they didn't exactly clue you up from the start. I was a bit luckier. Went for the mamo on 16 Dec (I had a lump though), and in the course of the next 3 hours had the mamo, ultrasound on both, and a core biopsy. Before the biopsy my surgeon told me she didn't need to wait for the results and had put me on the surgery list for 24th. During the biopsy we went through everything they were going to through at me, chemo, rad and extra drugs if I need them. So, by the time I left that day I knew what I was in for, maybe not all the specific details, but enough to be able to get a handle on it. The biopsy results came back 3 days later, positive, as we expected, so I had the surgery on 24 Dec. I just started chemo last Tuesday for 6-7 months, then I have 6 weeks rad, then tamoxifen for 5 years. I'm still waiting for HER2 results which is another search to see if I need Herceptin for a year too. The lymphodema bit is only really applicable if you have lots of nodes removed, and it doesn't necessarily develop. Have you tried the MacMillan site. I got loads of info on that, cancer treatments, drugs and their side effects, etc. Every time I've seen someone I know as much as they can tell me already. It really helps. You'll get even more to add to that from this site. Everybody's going through the same thing, different surgeries, different treatments perhaps, but we're all in the system.
Can you get in touch with your BC nurse? If you feel you're being left out in the cold on the information front, she should be the person you can target to make sure someone sits down with you now and goes over everything. It's a really bad time, and you're so right about the feeling of being out of control. I had that too. Eventually I just decided to take it one step at a time, one day if I had to, find out as much as I could independently of the system, then hang on for the ride.
Hi Helen and welcome to the forums where I am sure your fellow users will be along with support very soon, in addition, BCC have published a booklet for those newly diagnosed which may help you to understand more, you can order it via the following link:
http://www.breastcancercare.org.uk/serv ... ication.82
Please also call our freephone helpline on 0808 800 6000 which is open Monday to Friday 9am-5pm and Saturday 9am-2pm where you can speak to one of our team who are either specialist breast care nurses or have had an experience of breast cancer themselves and are here to support you and help you through this difficult time.
I was recalled after my first mamogram I'm 51yrs old, for a second mano at a breast center in Swansea, on the 19th December 2008,I had no lump or symptoms. I had my results on the 2nd Jan09, not what I expected, I was quite cross and very P***ed off, I could do with out it, had a wide incision and centenal nodes removed on the 13 jan, good result this time. Now I keep thinking I am home and dry, no cancer in the nodes, enough tissue was remove with the lump, but things keep cropping up, Hormone therapy, chemo, radio, and lymphadeama, bits that blead to more bits of information. What I am and am not allowed to do. I am a bit of a control freak, and I am finding this all a bit out of control, and get very cross and frustrated. anyone feel the same. HelenW153 Pembrokeshire Wales