New diagnosis
Comments
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Hi, Sorry to hear people are doing this to you. It is a pain isn't it!
it can feel like a kick in the teeth when other people dismiss and minimalise your situation by saying "Aren't you lucky?" when instead you need them to acknowlege your very natural fear and distress, and meet you where you are and respond to your need for understanding and empathy instead of dismissing it to make themselves feel better. If you have just told them that you feel you are lucky for whatever reason, that is fine, but when all you have told them is your diagnosis, it demonstrates really bad communication and interpersonal skills to respond that way.
Sometimes they really don't have the capacity for empathy and are likely to be people you are better to see less of for your own sake during your cancer journey. But sometimes they just have no idea what to say and are too shocked by your situation to be sensitive enough to take their cues from you. And a bit of education may solve the problem.
There is a great little book (free) put together by the Breast Cancer Research Centre called "The Power of Words" which can help our nearest and dearest get a better feel for how to talk to us about our cancer. Their phone number is : (08)93212354 I got a copy in my oncologist/breast cancer surgeons rooms in the Mount hospital, but you can also download it online and email it to some or all of your friends and relations. Just google BCRC and "the power of words" for the link.. It may change their behaviour, but if it doesn't, it gives you a basis for pointing out what they are doing wrong and why it doesn't help. Good luck and best wishes, JessicaV
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Thank you JessicaV for your complete understanding of what I am feeling. I will definitely get a copy of that book!0
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Hello Jen
Gosh I remember what it's like at the beginning. Don't be shy at having a jolly good melt down/temper tandrum or just a good cry.Take one day at a time and try of course to take someone with you to all appointments because love, you think you can remember, but it's wise to have someone else there either recording (ask permission) or writing down.
In a lot of respects the cancer journey will bring out the best in you it can bring a family together. Wait for it to happen and this time in 6 months you will be able to help some person just in your position. Just like me who is determined to be on the road of recovery. I only have 6 weeks of radiation left as I start Monday but I have done 5 months of chemo and had a bi-lateral mastectomy a month ago. I had 20 G girls and I feel I move like a grey hound now!!!!!!!!! I will not be getting re-contrustion but I am 55yrs old and that decision is the right one for me. I am also a public patient and proud that WA have the best in Breast Cancer. Keep in touch and do come alone to next get to gether held in Mount Lawley. If you need any help with transport let me know or Mich who can arrange anything!
Cbyer hugs and you can do this girls.
Sarah
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I meant do come along (not alone) to next get together! (chemo brain still kicking in sometimes)
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Hello. Am so glad you found mich and the gang. You poor thing, having such a long time between diagnosis and treatment. Once you have a treatment plan, you will feel much calmer. I am in Bunbury and had my mastectomy, chemo and radiation down here so am not familiar with your doctors or hospital. I have only been to one get together but am planning to go to heaps more in the future. They are a wonderful bunch on here. Very important to put yourself first and be gentle. Baby steps, one at a time.
Love and hugs, Paula xxx0 -
Hello. Am so glad you found mich and the gang. You poor thing, having such a long time between diagnosis and treatment. Once you have a treatment plan, you will feel much calmer. I am in Bunbury and had my mastectomy, chemo and radiation down here so am not familiar with your doctors or hospital. I have only been to one get together but am planning to go to heaps more in the future. They are a wonderful bunch on here. Very important to put yourself first and be gentle. Baby steps, one at a time.
Love and hugs, Paula xxx0 -
Thank you so much for your comments about my Dr at Charlie's. I will be asking those questions for sure. Never even considered some of them! X0
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Thanks Sarah, can't believe how supportive the members here are. I have 20DD's myself and at this stage am at peace with whatever happens to them....as long as they get it out! Haha. First laugh for a bit.0
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Thanks Paula, the waiting is killing me...I think it will be better once there is a plan of action too.0
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Hi Sarah (and also Jen), Thought I'd put this here because Jen will be asked about her wishes re reconstruction when she sees her surgeon. But you mention your new decision about reconstruction. . My daughter just gave me some information about breast reconstruction, that I had not come across before that I thought you might find helpful since last post you were upset that you had to wait a year before you could consider it.. I too was deciding that I probably would not have breast reconstruction, though I have put that decision off to Feb15 or Sept 15. Personally, I want to wait through the period when a local recurrence is most likely so they don't have to cut it all out again for further surgery, and so I am not checking for lumps through a breast which is in the process of being reconstructed so likely to be lumpy anyway. But that's just me, and others, maybe you, see it differently
First is that you can have a good and effective breast reconstruction done months or even years after a mastectomy so you don't have to make a permanent decision now. Second is that so long as you have not had intensive radiotherapy on the chest skin and it will still stretch ok, you can often have the skin stretched with expanders and then an implant inserted, either silicon or saline to reshape the breast or breasts, and these are now generally really safe, not like the old ones. Then a nipple can be surgically constructed and an areola tattooed on. Third they have developed an amazing array of surgical techniques that use either stomach tissue or shoulder/back muscle tissue to create a breast from your own tissue, with an implant if necessary to enlarge it beyond the size possible with your own tissue.
Isn't it an amazing world we live in!
Jessica
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Hi Jessica, I am still waiting on delivery for the kit. I rang my breast care nurse at Charlie's today and had a chat about a few things. They are pretty good there. I did find out that even being private in a public hospital doesn't guarantee you the surgeon you want! So everybody please be aware of that. If you want to go private go private hospital too. I would never have thought to ask if it wasn't mentioned here.
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Hi Jen, I am really glad to hear you have made contact already with your breast care nurse at the hospital. They are a great resource and having a good relationship with her will be invaluable once you start the treatment processes etc. Without treading on anyone's toes, you can also have a free breast care nurse supporting you from Breast Cancer Care WA, (and this organisation can help with transport and financial stuff as well, and are on good terms with the hospitals etc). Denise pointed out to me that the community-based nurses are a useful bridge for when you finish all your hospital-based treatment, and can feel a bit lost and unsure who to ask about the things you still need answers to.
BTW, my GP expected that it would take about 2 weeks to get an appointment with a breast surgeon once I was diagnosed, and possibly one or two weeks to then get into surgery. So although it seems like forever, and the waiting is the worst thing, 12 days from diagnosis to surgical appointment is about what she seemed to expect. Also, when you get in, they may suggest neo-adjuvant chemotherapy to shrink the tumor before surgery, since they can see how your cancer cells respond to the treatment while there is still a tumor to monitor, and also they often do it so you can then have a lumpectomy if it turns out to be borderline in terms of size. If when you see your team you have already got it in your head that you just need to get rid of it, you may not be open to this choice, so it might be a good thing to be mentally prepared for this option and ready to ask why it would be a good choice for you,- what are the pros and cons for you.
Sometimes it means that you can take part in a Phase 3 clinical trial and get access to being treated with the newest chemotherapy drugs which have been proved to be brilliant for whatever sort of cancer you have, but have not yet been approved for cover by PBS, so you get it free where otherwise it would either cost heaps or not be available. Sometimes it means being put onto drugs that have only been made available for having before surgery, and if those are the best ones for you it can be an excellent option to consider.
best wishes
Jessica
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Hi Jessica...never even thought about chemo before surgery. Guess I won't have too long left to find out now. Appointment is Monday. I will certainly be a full bottle of info when I hit her surgery at 9am! Still hoping for small and not much spread as I suppose we all do
Will also give the community nurse a call afterwards as well if I need to. Thanks again, all of the members of this group have certainly made sure i feel supported and informed. 0 -
Hi Jen,
I was in your situation 11 months ago and remember it well.
I went to my first Perth BCNA get together in Feb and the book Breast Cancer Taking Control was on display. It was available to purchase through this site and I wished I had it right from the start. So I thought I would pass this recommendation on to you. Its easy to read and very informative and has helped me understand the whole process and answer the questions you forget or don't know to ask.
Its very hard to not have your mind go racing ahead to all the possibilities but as Jessica said no decisions can be made till you get the pathology. Despite being told mine was small 110mm, when it was cut out it actually measured 200mm so the surgeon changed his tune about chemo after originally saying I may only need radiotherapy.
I ended up with 2 lumpectomies, 4 doses of chemo and 30 sessions of radiotherapy for a 2cm tumour with no spread at the age of 50.
Things do improve, time and treatments pass and I am heading to Alaska for 6 weeks to celebtate my 30th wedding anniversary and completeing my treatment. I did return to work after 6 months off and have been working for 4 months now and after a change of diet feel really well.
I will be thinking of you Monday and maybe we will meet at one of our gatherings
Michelle Walsh xx
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Hi Jen,
I was diagnosed with early detection DCIS in October 2012 and cutting a long story short I am doing really, really well. Ended up having two lumpectomies, a course of 30 radiotherapy treatments and am now taking Tamoxifen. I'm 56 years of age. I joined the Perth BCNA group a year or so ago and whilst I don't get to every get together it's the best thing I've done since being diagnosed as my little family is made up of men only, apart from myself, and it has helped being able to talk about things with the gals. I'm most happy to connect with you privately if you wish. I found going back and forth to the radiotherapy treatments to be a bit trying and recommend seeing if you can have someone take you to some of them both for the company and the break from driving, if it's possible. It's inevitable that people are going to say things to you that will piss you off believe me. My own mother told me that lots of women get breast cancer and they are all just fine. How ignorant is that! We have so much to deal with when it comes to a breast cancer diagnosis and not just the treatment itself. Take a big, deep breath, spleen vent when you need and just know that we are there for you, if needed!
Lots of hugs,
Vicki0
