the straw that broke this camels back

Great advice. I actually use a BCN from Breast Cancer Care WA (a fundraising organisation) more than the one from my Surgeons so she is really non biased. She has been the most tremendous help with everything from advice on the disease including treatment and pathology, advice on entitlements and providing zonta breast cushions and even some information on my surgeon of choice.

I understand Narelle if you feel you can't bare to fight with surgeons etc when you are trying to concentrate on fighting the disease and your recovery. This is why I think you should try contacting a BCN from a fundraising organisation or similar. I was originally hesitant to make contact but after finding the BCN from my Surgeons harder to get hold of I tried mainly because of my impatience. But after doing so she has maintained contact with me not the reverse. She calls at each stage, came to see me in hospital and made sure I was aware and was getting all entitlements. Obviously I have been blessed with a goodie, but it doesn't mean there isn't one out there for you somewhere. I was hesitant because I wasn't sure I was entitled to speak or request advice from someone outside my medical team. So I got started by ringing with just some questions I had about various things like breaking the news to children, different types of reconstruction and different disease fighting treatments. Since then she has done all of the work so to speak maintaining contact with me. You deserve this type of help and don't feel as though you are being too much trouble or waisting their time. 

If you have the energy and time give it a go. If you can try and listen to your gut, more often than not it is trying to guide you in a certain direction.

Hugs for you and Harry :0)

Lara xx

I'm with Celeste, (Hadn't thought of that) - see the Breast care nurse(s) if they have them at your hospital, also I found out recently that many public hospitals have patient advocates, who can help as well, and I ALWAYS take my husband to ALL of my appointments, who will back me up and talk for me if I get overwhelmed and he will not take crap or no for an answer :o)

Also the cancer council, or local face to face breast cancer support groups might be able to help with a patient advocate, etc for you to give you some back up against this so called surgeon...

I fully understand about your darling Fir Child Harry and his surgery, I don't have human children (due to a genetic condition I have and have a 50% chance of passing on as well as numerous other conditions I can pass on and having a neurological chronic pain conditions which make looking a child next to impossible), but do have a fur child - 9 1/5 year old Boo a Norwegian Elkhound B1tch with hip dysplasia, who costs us quite a lot (monthly injections, powder in her food every day, weight loss,  pain pills (when needed, and not needed very often at all now - maybe once inthe last year :o) ), but they are like children so I can fully understand saving $4000 for his surgery as you would for a human child, they are one of the family, just like a child.

I have top private cover (which costs me a LOT on my pension), but was told as a private patinet it would cost me $2000 to $10000 per breast for mastectomy and reconstruction in out of pockets, and there is NO WAY ON THIS EARTH I could afford that so I went public, and am having the prophylactic one done publically too, later this year (or early next year), I go one the waiting list when I see my surgeon again in September.

Where do you live narelle? My sister lives in Ararat and my Brother is in Warrnambool (where I grew up).

Is she the only breast surgeon in the area? if not you can see another publically, you have this right, especially with the way she is treating you, by not getting clear margins etc. I thought DCIS could become IDC (Invasive Ductal Cancer) over time? but I could be wrong as I had IDC.

You should also be able to see a public plastic surgeon about getting things fixed that she has stuffed up.

I had a nipple and partial skin sparing mastectomy for my IDC as I had a 3.1cm tumour below my nipple near the skin crease, some of the skin was removed where the tumour had puckered it, to makse sure there was no cancer in or near the skin and I have CLEAR margina all around by more thn the needed 1cm.  I am only having chemo because there was a small deposit about 5mm in one of the 2 sentinel nodes they removed.

Good Luck Narelle and know that you are NOT EVER alone in this journey and you can vent and talk about ANYTHING becasue we all do understand what it is like, that is the best thing about these sort of sites...

I have to agree with some of what has been said above. Get a second opinion! I am being treated in the public system and although I have an allocated treatment team, at any time I can make an appointment to see a different surgeon, oncologist, radiographer within my hospital if i want to. I can also transfer to a different public hospital altogether if I want to. I cannot afford private health cover and to be honest, I don't see the need for it as I'm quite happy with the service I've received publicly. I think you've just hit a 'dud' surgeon who is not listening to your requests. Can you take someone for moral support to your next appointment with her? Someone very assertive who can put her in her place? I am also wondering if you have a Breast Care Nurse at your hospital? I ask this because BCN's usually participate in round table discussions about patients, and they can also raise your questions and concerns to the treatment team on your behalf. At least if you speak to the BCN you will have your concerns officially on record. Sometimes it is difficult to raise concerns when we feel vulnerable and powerless, however clear margins are essential I would've thought? I know when I had my surgery, they told me that clear margins are the ultimate surgery goal, and that this may mean multiple surgeries to "get it all". They told me it was not uncommon to have to come back for 2 or 3 sugeries to ensure clear margins. I was lucky enough to have margins clear within first surgery. Don't give up on getting to the bottom of all of this! Write a list of questions down and if you aren't happy with the answers say "that just doesn't sit well with me. I hear what you are saying but in my gut I feel something isn't right here. Is there another specialist I can talk to about this to get a second opinion?" It'll take courage if you aren't used to confrontation but it seems necessary in this case. Good luck, Celeste?

I totally understand why you can't afford it, I have paid for mine on credit card OOPS. I don't have top cover unfortunately and when I was in HBF trying to claim on some invoices the women told me if I had arrived on a boat all would be covered. To be honest I generally don't have an opinion on refugees as I am just not educated enough on the subject but after waiting 25 minutes in HBF and walking out with $17.10 on over $3000.00 worth of bills I had an opinion!!!

Not to mention haven't you been nursing for over 17 years helping others and paying your taxes all the while. This maybe the lucky country but our hospital systems need a severe shake up.

I also totally understand why you would do everything to help Harry. I am a dog lover, I have two Murphy and Molly and always have had at least one my whole life. They do complete me, my husband calls me dog woman at times but what they bring to a family is more than money could buy.

Never forget you are absolutely human, even more so for having suffered this cruddy disease. It is definitely some of these surgeons who need to reassess themselves and come down from their pedastools so they can hear what their patients are saying. If you feel she hasn't you could always shout, yell and scream at the stupid arrogant female :O) who knows she may just learn something.

You are incredibly strong to focus on the now and have a back up plan for margins and scars. Your 15 old is incredibly lucky to have such a strong, dedicated Mum. Three cheers for you.

Thinking of you

Lara xx

Lara your words have been a bright spot in my day, to know that others know how it feels is just so helpful, and I know what you mean by having the cancer is the easy bit, I have been both disappointed and surprised by the friends and family bit, the ones you think will be there not a word and the ones you havent seen maybe even since school are offering you the world,  my finances just wouldnt of allowed me to go private, I had already agreed for my 15 year ld to go on a school trip to Malaysia $3500 before this happened, and I know it sounds silly to some but I am trying to save $4000 to have my beautiful dog harry's diabetic cataracts removed, he turns 10 this year so hopefully will have a few good years left, I think if I had had top private cover it still would of been between $10,000 and $15,000 on top of that, for bialterals with reconstruction, so completely out of my reach, we both work but, dont have that sort of money around, I am afraid I am stuck with her to at least get the exchange done, I guess then I can see if I can consult a plastic surgeon maybe in Bendigo which is the same distance as Ballarat for me, to get all these margins and awful scars fixed up, thanks so much for your time and words you all help me to feel just a little human again.

Cheers Narelle

Narelle that totally sucks. When I was first being treated in a public hospital I had a GP tell me that I was too young to be there and if everything was clear she didn't want to see me back there until I was 45 (imagine the possible spread in 5 years). Turned out to be after 6 core biopsies and 9 vacuum assisted biopsies Atypical border line DCIS. Then the surgeon I was referred to (still public) told me I only had Hyperplasia (she was very busy and didn't like my questions or the fact I had performed my own research). After explaining to her I had already been told it was Atypical borderline DCIS so for peace of mind I wanted both boobs off , because my Aunt had had cancer twice in both boobs she acted like a condescending B**** and brushed me off as though I was some sort of hypercondriact. Let me just say here that I went to my Mum's GP for a pap smear (have previously had cervical cancer) as mine was on maternity leave. Mum's GP new my family history and told me as I was 40 now I needed to have a mammogram and gave me the referral (I never asked for a mammogram or to be a bc patienta). I very nearly didn't make the appointment I owe her so much. I am a busy part time working, part time studying mother of two with a husband who works away. My gut urged me to make the appointment even though I really didn't have time to attend and had no obvious lumps.

After discovering this surgeon had lied when I called to query the Hyperplasia diagnosis a few days later (trust your gut) I was offered to see the head surgeon the next business day who couldn't perform the diagnostic biopsy in the time frame he wanted so I decided / was advised to go private. I was also told I should never have been told it was only Hyperplasia and that the incident had been reported to the Medical Director.

The diagnostic biopsy was performed privately and confirmed DCIS. A mastectomy of the right breast was advised. Isn't that what I had asked for originally? Not only that but I decided to take the other off also. As I have mentioned on other blogs I had to pay for the side with no cancer or as advised I could wait until I get cancer (how do I sleep, breathe, focus, live, laugh and enjoy life while waiting????? clearly rocks in their heads) in the other side to have it covered.

Am I missing something? What use is early detection if we are not going to get  early intervention with effective treatment. I would absolutely insist on clear margins. I thought that was the whole purpose of surgery. OK I get some women are attached to their boobs, but how can a surgeon sleep at night knowing he might have saved a boob but ultimately lost her life???????????

You are not stupid Narelle you have nursed for many years. Don't let them treat you as though you are. You have bc not a missing brain.

Wishing I could refer you to my private surgeon in WA. He has never once treated me like an idiot and agreed my choice of preventitve treatment was appropriate and required.

Sending you strength to deal with these arrogant professionals. I have even said to my husband at times dealing with a cancer diagnosis is easy compared to endless struggels with impossible surgeons and medical professionals. Even friends and family can be questionable at times.

Thinking of you

Lara xx

For me the issue is that I am going to have genetic testing done and also I have only one ovary left so, if I was oestrogen positive whether or not I had either of the BRac1 or Brac2 genes or not then It would be a good idea for me to have that ovary removed as I then would not have anything left making oestrogen in my body to feed any cancer that may or may not recure, if I was oestrogen negative then I would not be an issue, I did not have clear margins as I had a skin sparing mastectomy (not a very good  ones) and on top of where they have supposedly removed all the breast tissue so in the remaining skin somewhere I cant even get them to tell me exact spot, the cells where within o.1 mm, clear margins are 10 mm, they are saying that is ok as there is no breast tissue left( what are they god) and therefore no ducts which is what DCIS grows in then I should not have a recurrence, that is what I am not happy with as I know poeple it has happened too, the good news for you is that DCIS is non invasive you will not need chemo or radiotherapy you have caught it early, I have just had bad luck(story of my life) I should be doing the happy dance like you will be able to do, dont worry to much about the op, I made it through with only having pandol/panadeine, you will probably have a few drains which are a pain to carry around but not the end of the world, I will send you a contact request so you can email me anymore questions direct if you like, happy to answer any thing no matter how small or large cheers