Feeling nervous now

nonkyboynonkyboy IngleburnMember Posts: 186
8 weeks ago I was diagnosed with  INVASIVE DUCTAL CARCINOMA AND DUCTAL CARCINOMA IN SITU. I saw the breast surgeon within a few days and she sent me to have multitudes of scans, blood tests etc. my diagnosis is complicated by the fact that I had a hip replacement 17 months ago that was complicated by a major post op infection that left me in hospital for three months and having three further surgeries. I am still on antibiotics from this infection and the likelihood of me coming off them in the foreseeable future is zero. I am under the care of infection control at one of my local hospitals for this. Anyway, they had to weigh in on this upcoming surgery in case either area was compromised. The other problem I have is a regurgitation of two of my heart valves so care needs to be taken with anaesthetics, so of course Cardiology also need to be involved. Anyway I went back to the surgeon yesterday ( she's been overseas for six weeks) to chat about all the results and she told me that she can't book me into surgery yet as something new came up on my last heart scan which needs a cardiology clearance. Luckily I already had an appt booked with my cardiologist for this coming Monday. The surgeon has agreed that if he gives clearance I can call her office prior to her getting his letter so things can start rolling. She wouldn't put me on her lists tentatively in case I need further cardiac treatment first. I'm just worried that it's already 8 weeks and I can actually see this lump in my breast now. Do you ladies know if these things spread quickly to the lymph nodes etc? Everyone seems to have had their surgery so fast in comparison to me. I've seen no one and have not been put into contact with oncology or anyone as yet. The surgeon said that will happen post surgery. Im a patient person but my family is starting to freak out that this thing is going to take over my body and that cells are escaping into places they shouldn't withball this waiting. What do you ladies think?



  • ZoffielZoffiel Regional VictoriaMember Posts: 1,631
    That's pretty stressful @nonkyboy. I'm guessing that your case is complicated and, quite rightly, issues with hearts and anaesthetic trump a lump in the boob.
    Just throwing this out there--I have a friend who, due to her age, is in the process of deciding what surgery she is up to having. We're going in today to talk to a surgeon about bypassing the lumpectomy stage and going straight to a mastectomy. My friend, quite rightly, is more worried about two anaesthetics and the possibility of two hospital stays than she is about losing the breast which, given the size of the tumour, is likely to happen anyway. She's a very pragmatic woman.

    It sounds like have already been through the wringer. I hope it all starts coming together. Many of us have had delays in treatment. My chemo was put off for nearly three months because of post op complications.. it nearly did my head in. I was reluctant to have another go at chemo anyway (I've had a recurrence) and the delay put me in a space where I was on the borderline off whether it was going to be worth while to have it. I still wonder if I did the right thing by going ahead but that's another story.

    If you haven't linked up with a breast care nurse yet, I'd say how is the time to do it. They are fantastic at keeping you same when everything feels like it is unravelling and have really good advice and resources for dealing with family concerns.
    Good luck, Marg.
  • iserbrowniserbrown Regional VictoriaMember Posts: 2,271
    Hi!  @nonkyboy - goodness isn't it good that they have recognised all these aspects and checking everything prior to putting you under strain with anaesthetics

    I agree with Zoffiel - if you don't have one, sus out a Breast care nurse - she will be your go to! 

    As to chemo or any other treatment options that is, as your surgeon said, post surgery, after they have all the pathology results.  There are counsellors out there that can help, BCNA or Cancer Council or perhaps your own local hospital. 

    Here's hoping your cardiologist visit will be a positive one that will allow the next phase to begin.

    Take care and willing you along to a good outcome x
  • UnicornkissesUnicornkisses Central CoastMember Posts: 395
    I second @ zoffiel's advice to contact a breast care nurse.
    I didn't use mine enough and her advice was invaluable. They are very knowledgable and can help calm the panic.
    I first found my lump in early December and did not have an op until 19th January. That was lumpectomy. I have since had the breast removed on 3rd August, but I had chemo in between.
    I understand your concern, it was mine too over Christmas, wondering what the hell the cancer was doing while I had to wait.
    How fast it progresses depends on what grade it is, but I was assured that a few weeks would not matter. Did it matter? I don't know.
    I know I got in one hell of a state early on if anything was delayed, if an appointment ran late, or someone did not get back to me about making an appointment when I was waiting for a phone call.
    I ended up having to take Valium for appointments, scans, tests and on days I was making appointments, and I am not a Valium type person. Cancer does your head in!
    I did find that my specialists moved quickly when they needed to.
    If they said surgery or chemo had to be within a 6 week window of the previous treatment, it was.

    If I was concerned about the length of time I said so too.
    Ask questions, be your own advocate and tell them how you are feeling, and what your worry is.

  • Summerhill38Summerhill38 VictoriaMember Posts: 713
    Hi Nonkyboy
    Goodness, you have got a lot happening.  Trust in your specialists as they seem to have it all in hand and, as Iserbrown said, it is good that they are considering everything carefully.  They are weighing up the risks of each issue and if the boob issue was the biggest problem they would advise you to go ahead with surgery quickly, whatever happened.  As it is, your care team are being cautious, they will have a plan and it will work out for the best.
    Use your breast care nurse as a sounding board - she will have experience and be able to help you with your family's concerns as well.
    You are in our thoughts and we will watch for you news.  Keep in touch.
    Hugs  Summer  :-)
  • nonkyboynonkyboy IngleburnMember Posts: 186
    Thanks ladies. How do I get in contact with a breast care nurse if I haven't been able to touch base with the cancer centre at all as yet? Do any of you know? I'm feeling ok about the wait because I'm a very laid back person but my family are freaking out and getting very antsy about the long wait. 
  • iserbrowniserbrown Regional VictoriaMember Posts: 2,271
    A couple of options - the hospital that you are dealing with or
    McGrath Foundation - put in your area and it will tell you if there is one available in your area and how to get in touch

  • nonkyboynonkyboy IngleburnMember Posts: 186
    Thanks so much @iserbrown
  • nonkyboynonkyboy IngleburnMember Posts: 186
    I found my local breast care nurse @iserbrown and will contact her tomorrow morning and hopefully have a chat to her.
  • iserbrowniserbrown Regional VictoriaMember Posts: 2,271
    Woo hoo!  You are on the road to making sense of the maze of information and having a go to person as the specialists don't always have time for all the detail and that is where the Breast care nurse is so helpful!   Take care xx
  • primekprimek Broken HillMember Posts: 4,115
    It's hard enough at diagnosis to wait never mind all the delay you have had. However  keep in mind that you have had quite a workup already so they have a pretty good idea how urgent this all is in regards to surgery times. But also not getting an infection or issues with your heart during surgery is paramount to ensure nothing delays the next stage of your treatment, whether that be chemo , radio, both or not needed. All of this is not final until after pathology and review if your general health. A slight delay now but no delay after may now be the go. 

    I was diagnosed just before Christmas 2015 with a suspicious lump and waited 2 weeks for pathology results,  then another week for first consult and then 3 weeks until surgery. My cancer was very aggressive yet there wasn't any concerns of the wait...and I had no health issues. 

    I remember the fear of "is it growing and spreading " and I was relieved when it was finally out. I imagine after your Monday appointment it will all happen quickly. Do tell your breast surgeon your concerns and seek guidance as to risks etc. Everyone is an individual and be impressed you have a team considering your entire health. You don't want an adverse outcome from rushed surgery. Yes it is life threatening....but not this week. 

    Hope all goes well Monday and your date is set soon. Kath x
  • socodasocoda LeumeahMember Posts: 1,653
    Hi @nonkyboy, I too had a bit of a wait. Went to breast screen 1 & 1\2 weeks later called back. One week later results. Two weeks later appointment with surgeon. One month later surgery. I had found my lump in February but it seemed to go away (was tethered and when I felt for it it actually pushed out of the way). Surgeon told me that a couple of months wouldn't make a difference. I think it's pretty normal to worry about how long it's going to take and you have the added stress of other concerns. Wishing you all the best. Xx Cath
  • nonkyboynonkyboy IngleburnMember Posts: 186
    Hi ladies, I saw the Cardiologist this afternoon who said he was very surprised at my results as he totally didn't expect them. He got straight onto the phone to the hospital and has added me to his list tomorrow morning for an urgent angiogram. He's hoping it's just a shadow on the scan but said if not, I may need stents. Apparently the breast surgeon has contacted him and said if I need further treatments/tests on the heart then she will refer me to the oncology team to start treatment prior to breast surgery ( wish she had said that to me to stop me stressing). Anyway my blood pressure was pretty high today at 180/95 so he has doubled my BP medication and added a blood thinner too. I was supposed to have a D&C, hysteroscopy and removal of Mirena next Monday at the breast surgeons request but that is on reserve until tomorrow's results too. I've been having x-rays and blood tests this afternoon in preparation for tomorrow (8.30am) so am hoping for a peaceful and quiet evening. Thanks for all the support. My sister is most upset that all this is happening to me as no one else has such bad health in the family but as I sai;  if it was the lottery I would share with you. I'm not going to even dream of inflicting this on anyone. I'll be okay
  • AfraserAfraser MelbourneMember Posts: 1,462

    Stress is quite enough to push your blood pressure up. Sounds as if everyone is doing what they should (even if they are doing that annoying thing of talking to each other but not always to you) so deep breath time. I got an arrhythmia through my treatment which alarmed me until I realised the heart is tougher than I thought.  Here's hoping for a shadow, but if  a stent is required, it's a pretty straightforward procedure.

    Best wishes for tomorrow.

  • primekprimek Broken HillMember Posts: 4,115
    Well sounds like your team are onto it and working together. Here is to a speedy resolve of the cardiac stuff so next stages can happen. Kath x
  • Summerhill38Summerhill38 VictoriaMember Posts: 713
    Hi @nonkyboy
    Good to hear your medical team are working so well together - but isn't it a shame they don't think how their initial words can play on one's mind ?
    I also think I got the worst possible group of genes (osteoarthritis, BC, heart problems, blood pressure, deafness etc) but then I think of my brother who died suddenly with acute myeloid leukemia and I reckon at least I am still alive !
    Your post sounds so much more positive and it looks like you have a supportive sister so you'll be OK.
    Keep posting as we will be keen to know how you are getting on and even more keen to provide ''insider'' support when needed.
    Hugs  Summer  :-)
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