Forum Discussion

such_is_life's avatar
14 years ago

the straw that broke this camels back

Well it might of been the shortest day of the year but for me I am afraid it has been one of the longest and still going, at now I think it is 2.00 am, had a follow up appt with surgeon whom I had not seen since operation, and I have never been so de humanized and demoralized in my life, I do not have clear margins and she  doesnt ge it that I can not live with that, I should just trust her well, arent they famous last words, she also tried to put more fluid in one expander even though I have repeately said I dont wont to go any bigger, and couldnt find with magnet, so just said pot luck, and missed so now will have a slow leak in that one, my scars are hideous and she said they dont even need revision, they wouldnt to hormone receptors on my pathology as was pure dcis, event though I had explained it had bearings on whether I kept my remaning ovary or not, guess as I public patient I am just not worth the extra money, makes me wonder why I have slaved my guts out for close to 27 years night and day doing the very best I could for all my patients, the only time I havent worked since I was 15 is the 4 months I had off to have my kids, think I have brought back leporacy so be careful, dont think I can spread it over the net though, feel like just telling them to rip them out cut off whatever skin is left, and at least them I might live to see my grandkids, at this rate it might be the only way, as Kamarl would say "Why are people so unkind" and yes I know that is showing my age badly,

18 Replies

  • Hi Narelle Sounds like I have a similar diagnosis to you, pure DCIS, I was treated as a private patient and did not have hormone testing in pathology either. Can you explain why this is important. I was diagnosed and in surgery within a week so didn't really have time to get educated on everything. I'm going back in for surgery on Tuesday for the bilateral masectomy and temp expanders so can talk to my surgeon about this more. Also can you explain how you can't get clear margins with a masectomy? It's all a bit confusing for me. I hope you get some sleep tonight and manage to see another surgeon. Ange x
  • Hi Narelle Sounds like I have a similar diagnosis to you, pure DCIS, I was treated as a private patient and did not have hormone testing in pathology either. Can you explain why this is important. I was diagnosed and in surgery within a week so didn't really have time to get educated on everything. I'm going back in for surgery on Tuesday for the bilateral masectomy and temp expanders so can talk to my surgeon about this more. Also can you explain how you can't get clear margins with a masectomy? It's all a bit confusing for me. I hope you get some sleep tonight and manage to see another surgeon. Ange x
  • I think you can complain to the hosptial, or the governing board of doctors (can't think of what it is called, the AMA or something like that), or the medical ombudsman.

  • I have to agree with all the above.  Your body, your rights!  Public patient or not!   Are you able to see another surgeon?  Is there someone who you can take who is a strong personality (to back you up)  and to put your points across loudly if your current team is ignoring you.  I took my sister and my husband, not there was any need, because they will speak up for me when/if I  was weary and feeling overwhelmed - but my team have been super.  Oh better, where are you, can one of us go with you?  I volunteer if you are in Brisbane.  Put one of us up against your surgeon, bet there is a rethink on her part re patient treatment!

    I have just been reading a book by Bernie Siegel (Dr) called Love, Medicine and Miracles and in it he talks about his transition from Dr Surgeon to Support Surgeon and how medical doctors arent taught this (or werent) and how important it is in healing and care.  Perhaps we should send her a copy?

    Take heart, we support you and will help you get what you want.  Be gentle on yourself you are not at fault in any way and deserve so much more.

  • I have to agree with all the above.  Your body, your rights!  Public patient or not!   Are you able to see another surgeon?  Is there someone who you can take who is a strong personality (to back you up)  and to put your points across loudly if your current team is ignoring you.  I took my sister and my husband, not there was any need, because they will speak up for me when/if I  was weary and feeling overwhelmed - but my team have been super.  Oh better, where are you, can one of us go with you?  I volunteer if you are in Brisbane.  Put one of us up against your surgeon, bet there is a rethink on her part re patient treatment!

    I have just been reading a book by Bernie Siegel (Dr) called Love, Medicine and Miracles and in it he talks about his transition from Dr Surgeon to Support Surgeon and how medical doctors arent taught this (or werent) and how important it is in healing and care.  Perhaps we should send her a copy?

    Take heart, we support you and will help you get what you want.  Be gentle on yourself you are not at fault in any way and deserve so much more.

  • Oh sweetie

    I would be not just angry but bloody angry.

    She seems like an utter B****. Is there anywhere where you can maybe put in a complaint about her conduct and medical conduct.

    As maybe she is like this to other patients as well. And maybe there are others who have complained about her. Or maybe you will be the first.  There should be a system where they must investigate this surely.....

    Is there anyone out there who may know where to complain about these sorts of things happening. And what to do...

    I know I would be trying to put in a complaint about her..... and making sure she is investigated.

    Like the others have advised, I would be seeking a second opinion and changing to another specialist. As I think the next time I would have to see her..... I would likely punch her in the face....

    Sorry, I am angry tooooooo.

    Let us know what your outcome is... would love to know.

    And good luck with it all

    Love JulieXX

  • You are TRULY Welcome, and yes we SURE get it.

    It just isn't fiar.

    Yes it is the Anger talking keep the skin and expanders, and continue on the journey, try to get someone to test your tissue for hormones etc for YOUR peice of mind. I believe yu have the RIGHT under certain laws or whatever to demand this (but I could be wrong). I kept my skin and nipple (as my surgeon said it was silly to go further if it wasn't necessary (all by what HE saw in surgery), I am glad I did this BUT will still get VERY regular MRI's for the trest of my life (Can't have mammorgams etc on implants as there is no breast tissue etc, so hve mammograms from now on). I am having other breast off soon.

    Is there anyone you can think of that might be able to ask for the tissue testing for hormone and HER2 status.

    Good Luck :o)

     

  • You are TRULY Welcome, and yes we SURE get it.

    It just isn't fiar.

    Yes it is the Anger talking keep the skin and expanders, and continue on the journey, try to get someone to test your tissue for hormones etc for YOUR peice of mind. I believe yu have the RIGHT under certain laws or whatever to demand this (but I could be wrong). I kept my skin and nipple (as my surgeon said it was silly to go further if it wasn't necessary (all by what HE saw in surgery), I am glad I did this BUT will still get VERY regular MRI's for the trest of my life (Can't have mammorgams etc on implants as there is no breast tissue etc, so hve mammograms from now on). I am having other breast off soon.

    Is there anyone you can think of that might be able to ask for the tissue testing for hormone and HER2 status.

    Good Luck :o)

     

  • Im with DanBoobs..

    Get another opinion, HOW BLOODY RUDE...

    I am a public patient and I have been treated amazingly by my surgeon, he is taking my other breast becasue I asked him too, due to my family history, he asked the genetics clinic to BRCA test me, I have some extra scarring under my breast where the skin has sort of stretched and left what I can only describe as a triangle of close together stretchmarks, the rest of my scars are fine, which is AMAZING since I reacted to the steristrips and blistered etc, and they have still healed fine.

    I got all of the hormone and such testing done at the biopsy and the mastectomy.

    If it is "just" DCIS, it seems to be quite extensive as you have been back for 1 revision already haven't you? I think you have EVERY RIGHT to ask to have your tissue hormone and HER etc tested to see what other treatments you should have and what your chances are for recurrance etc.

    You also have the right to say - enoughmy expanders are big enough I DO NOT want bigger. and to take a pot luck and puncture one leaving you with a slow leake is just not right.

    I don't think it is that you are a public patients I think it is that your surgeon is a down right B!tch, with no concern for her patients, there choice or fears, It alsmost seems like she is blaming YOU for not having clear margins, like it is YOUR fault, that your cancer is more extensive that she though, like it is a personal attack on her.

    Can you see another surgeon (even as a public patient you have this right), and maybe ask to see a plastic surgeon to look at the scarring (especially if they have to go back in to give you clear margins).

    I mean what woman would go through all the surgery and stuff, and then live with not having clear margins, for goodness sake, wasn't that the reason you have the surgery in the first place (this surgeon makes me VERY VERY mad).

    Have you seen a medical and radiation oncologist to talk over what if any other option you have,  would wether she recommends it or not, and they can get the tissue sample tested for HER2, and Hormones etc (I also thought it was routine to do pathology on ALL tissue taken under these circumstances). If she wont refer you ask your GP, (or another you can trust at the hospital), to refer you (if you need a referral at all, and sk you colleagues, who they would recommend if it was them or there wife, mother, daughter).

    DanBoobs is also right, we put our lives in their hands, but WE suffer the consequescene if they are wrong, it doesn't help if in 2 yrs time - she says "oops soory I was wrong we SHOULD have done that", it doesn't effect her that much but could have major effects on you (Like the specialist who told me my breast cancer was nothing but a band of fibrotic tissue, and not to worry about it, it isn't anything and there was a less than 2% it would ever become anything over my life - and I had grade 2 stage 2 breat cancer, luckily I couldn't deal with that and demanded another mammorgam and ultrasound (he used the one I had had done in April - 6 months earlier, which showed nothing), becasue it showed the 2.8cm malignanat looking lump and I had 4 core biopsies done then and there).

    It is OUR lives and OUR health and if something doesn't seem right, or a doctor is NOT listening to YOUR wishes, I say see another one and anothe rand another until you get one who will listen and act to YOUR liking.

    (Sounds like your surgeon is one of those specialists who has a GOD complex - I HATE them).

    Good Luck and I am sure it is Nothing, but you have the right to KNOW.