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sandramj's avatar
sandramj
Member
9 years ago

A new member and really wishing I wasn't

Received diagnosis on Feb 24th of Ductal Invasive Carcinoma Grade 2 in left breast after Mammogram with Breastscreen.  Fortunately Dr de Viana was the one who gave me my results and I later found out he was one of the best here on the Gold Coast for surgery and treatment.  I was in shock and we had a cruise organised with family flying from Perth & Melbourne to join us in Singapore then cruising for two weeks back to Brisbane.  I discussed this with Dr and he said two weeks cruising would be good.

So back to Dr on March 17th the day after arriving home and he scheduled surgery fro Wed march 29th as I had to go off blood thinners a week before. 
I managed to put the cancer to the back of my mind a lot of the time on the cruise as I was "tour guide" for a group of six first time cruisers and two we had cruised with before.  I kept very busy and only had one dream that included cancer and it was very tame. 

I have had depression for over fifty years and take antidepressants and now a mood stabiliser and without going into a lot of detail am taking a LOT of medications for heart disease, diabetes insipidus, thyroid and now realise I have anxiety.  My anxiety takes over and physically changes my wellness into diarrohea & a continual feeling of sick in the gut.  And today I am having trouble keeping busy to block the thoughts and consequent feelings.

I had at major shift in my thoughts on Friday morning in the shower and cried thinking how angry how I had ignored my left breast throughout this.  I felt very sorry I had ignored it and decided on an old therapy from another time of surgery - to think positive and change things little by little - those I have control over - and feed my body only good foods, nurture myself etc. 
But like another bowling ball thundering down my alley towards my "pins" id taken three weeks to stand back up - I go a phonecall from the Breastcare Nurse saying the MRI * recent ultra sound picked up another lump in the same breast - this one at 5 oçlock.  Previous one at 2 oçlock   and they thought it might be a satellite of the other one.  Therefore need another ultrasound ASP and another biopsy on Tuesday 11am.   
They also found another lump in the right breast that they thought might be benign - BUT I am worried and would like that biopsied too at the same time so I only have one anaesthetic (Had major clot on the lung & pituitary tumour in the past) 
I am scared beyond belief and cannot believe how quickly things have changed - AND not for the better.  I am imagining the new lump is an offshoot of the other one as it is invasive and so I am wondering if they weill suggest mastectomy - I am petrified about chemotherapy.   I was prepared for the wide incision and the sentinel node biopsy - but this seems too much right now......
I haven't told my family as I don't want to worry them unnecessarily about the extra lump until I know what it actually is.  But that seems to be adding to the stress.    
Ive got the journey kit and read a lot and thought I had it sorted - what it was - the surgery and what I needed to do.... \But now I feel back in the shock and denial stage I was till Friday.  Guess this is normal - but I hate it!   It's like \I have a thread from my brain through my gut straight to my bowels as the vomiting and loose bowels is immediate...... 
Guess it is also normal to feel alone and afraid to reach out to anyone due to feeling like a nuisance and there's nothing anyone can say except you'll be fine" But I don't know that right now.   
They say a problem shared is a problem halved and I hope this will bring some relief just from putting my thoughts and eelings on here.  Hope that's what this is for....... 
Ive had a lot of illnesses in my family and myself but I never wanted to EVER go to an oncology department.....   Guess I should be careful what I wish for.....   And sometimes what we put our energy on festers.....  
Soo many thoughts running around in my head - and ive managed to come out of major illnesses efore with positive thinking, reading Louise Hay etc, doing affirmations, relaxation and meditation but I can't seem to connect to this........  It's like its not real or maybe my previous way of managing things like this is to dissociate and that's what I'm doing on an unconscious level;.....
|Sorry folks this is a ramble - but its how my head, thoughts and emotions seem right now.
Thank you for the opportunity to :uload" share - rant  on here.    :) <3

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  • sandramj's avatar
    sandramj
    Member
    9 years ago
    thank you so much for your posts......  My latest update s it seems to change daily - or hourly sometimes.  
    I contacted the oncologist regarding payment and pension and to my absolute delight found out they bulk bill all chemo and the actual Doctor sees me after each treatment (included).
    With the radiation they have a place in the same building for private patients but also the same company has a facility at the public hospital, however, as he said there is a waiting list.  So I intend to approach the company for "private patients" and negotiate a mutually satisfying cost.  :). 
    I am finding like most of you suggest feelings and emotions change many many times - I think its part of the grief cycle, where I found out it was cancer but I blocked it as being real as I had stuff to do before I could have it removed etc and managed to keep it at the back of my mind.    Then when they found more lumps I was too scared and anxious to cry, kind of like "holding on" with NO IDEA if the results would be good or bad.  Then the surgery, and the relief that was over - still no tears.  In fact great excitement I felt so good.   Knowing I had to go back for results I could NOT feel in my gut if it was good or bad...  I just did not know..  Then to find out it was in the lymph node (The only one he could or X-ray people find) or as Dr advised there was lymphatic invasion.... Shock.....  Then Dr mentions the only word I did not think I could ever deal with - chemotherapy!!!!!  Dr says its good that my cancer was 100% oestrogen receptor positive - Her2 negative so can be treated with medications too.   Whatever that means.  As we are driving home I cannot help but cry and feel sorry for myself....  Ive had enough illness in my life - I deserve a break.......  That day and night I cry on and off and feel devastated and as per my last post, like Im not sure I will or want to fight on.....   It feels like the more bad news I get the more that is to come.......
    For the first time )possibly ever) I talk to my sons and cry and speak of my fears, without covering up and being the strong Mum who can handle anything.   They're both around 40 after all.   Time to start being REAL and looking after myself in lieu of protecting everyone else.     But that's been habit for over 60 years so gonna be hard to retrain.....
    Off to the heart specialist to have a heart echo to see if I can have the chemo next.  Results will be faxed to oncologist but I felt the results would be good by the persons VIBE.   That's another road crossed so on Monday its off for a CT & Bone scan to see if its spread anywhere else.   Then on Wednesday to oncologist to start the treatment plan.
    I am back on track today and feeling more positive again (at this moment) but it is such a roller coaster ride and as Im passing each hour, day I hear of so many other people who have had and survived breast cancer.  Thats great but doesn't give me 100% confidence I will be okay.  People say to me that Im not sick, remember before you knew you had this you were really well......... Yes, I did feel really well, before I found out, but I don't now.  I know I am not well now....  I have had cancer growing inside of my body and there may still be some there anywhere stalking my body......  The treatment of chemo, meds and radiation is such an assault on a body I am fearful my body is going to be strong enough to cope...  Ive had a lot of illnesses and take a lot of meds...  just hope my body can carry on to fight this fight too.  
    Sitting while the chemo liquid is fed into my body I cannot help but feel Im having the worst sort of poison you can ever have without killing you, and I wonder how I can be "appreciative" or grateful of this fluid?  Ill need to turn it around to make it a life saving syrup somehow in my head so my body won't reject it, that's going to be tough.  Visualisation, a recording of my voice telling me how good this will be may help.
    Has anyone else had these thoughts?  If so how did you handle them?
    Wow. Its been such a huge "vent" or BLOG again.  But other than the question above I think it was more about me downloading the stuff that has happened in the last couple of days that I needed to "deal with"
    AGAIN thanks to all of your wonderful people on here supporting us newbies and having patience with what must seem like extreme rambling - maybe some not even lucid........   

  • Hopes_and_Dream's avatar
    Hopes_and_Dream
    Member
    9 years ago
    Hi Sandra, I am so sorry that you didn't get the result you hoped for and will need further treatment.  I can't provide any info as I didn't need chemo but you will get a lot of help and support from the wonderful women on this forum. I did want to mention that once we have been diagnosed with breast cancer none of us receive free mammograms through Breastscreen.  We are deemed to need closer monitoring. I have my 12 month check up with Dr DiViana in August and am booked in for an ultrasound rather than mammogram.  You are definitely not sounding like a spoilt brat - this is a shocking process to go through and this is the place to vent your emotions!  I wanted to send you a hug and let you know that you are in my thoughts. Jane xx
  • melclarity's avatar
    melclarity
    Member
    9 years ago
    Sandra, I have private health cover but my latest mastectomy/diep flap recon was done in public and I still kept my PRIVATE Surgeon and Plastic Surgeon because they also work in the public system. Can you ask your Surgeon if he does too? I saved myself $10,000 and believe me radiotherapy I also did public...chemo I did private and lumpectomies private. I have a health care card and get discounted bulk billed for tests. Ask them about being on the pension, Im sure there are things that can help absolutely!! M x
  • primek's avatar
    primek
    Member
    9 years ago
    I chose public even though I have private health cover. What I really like about public systems is the team decision on treatment...not just one oncologist. Decisions and treatement are made on your current health, your type of cancer and good clinical trials which demonstrate the best treatment known for your type of cancer. Whilst keeping hair may sound fantastic I'd be making decisions on stats not hair. Because I had a her2 cancer I had a whole body contrast CT scan and bone scan...all covered by Medicare. I live in rural Australia so chemo was managed not by a breast oncologist but a general one. But my initial consultation was with a breast oncologist and decisions made along the way was always in consultation with him. My treatment was stopped early but this was after a discussion with the oncology team weighing up risks. Many of those public oncologist work in private practise also.

    So please don't feel you would get lesser care if you choose public. (Gosh ...that's where the clinical trials are run anyway)

    I hope you feel less stressed soon. Lymph node involvement doesn't mean it's not curable. Remember that. My niece had 10 positive nodes and is cancer free 14 years on. I look to her for inspiration.

    Take care. Kath x
  • SoldierCrab's avatar
    SoldierCrab
    Member
    9 years ago
    Hi @sandramj it is a shock ....
    • you can ask to see the public oncologist and explain you are on a pension.
    • You have a right to be able to access what is affordable for you. 
    • TAKE a deep breath and let out the stress 
    • DO you have a breast care nurse ?  give her a call and ask her for some options re oncologists etc and ask her to help with the information about costings etc. 
    • YOU are NOT a spoilt brat you are a women caught on the roller coaster of the breast cancer demon.... we have dips and hills and quick turns that we dont see coming... 
    • I wish I could just say that it will be ok.... it will be hard it is for us all but you can do this... one step, one breath at a time. 
    I want to encourage you I am 4.5years a survivor now.. 
    Soldier Crab 
    xxoox
  • AllyJay's avatar
    AllyJay
    Member
    9 years ago
    All I can say is that I'm a public patient and was in and out of hospital whilst having the AC chemotherapy (38 days in all over the twelve weeks) with neutropaenia (x3), anaemia, acute pancreatitis, (due to my preexisting autoimmune diseases reacting to the Neulasta, which was given for the aforementioned neutropaenia), terrible rash, spiking fevers and so on ad nauseum. On one of the admissions, the woman in the bed next to me was a private patient. One day she was talking (loudly) to her visitors, and rabbiting on about how she couldn't understand how people would say they couldn't afford private medical cover...she couldn't understand how they could do without it! Well...she lay in a bed identical to mine, and piddled in the same loo as me. The same nurses answered her bell (and no quicker than mine). She ate the same food and was given meds no different from mine. So big deal, she had her own doctor visit her, but how would one know which to choose, as you have mentioned? My oncologist is not what I would call "Warm and Fuzzy", but you know, I don't see her for a social visit, I see her for her (great) expertise. My surgeon, I have nicknamed "Tinkerbell" and she too, I would hazard a guess is on the Autism Spectrum Disorder chart...totally lacking in people skills. There too, I'm not wanting another friend, I see her for her skills with her scalpel, and these, I understand are really good. Look with an open mind at all your options and then put all your trust in your choice. Remember...how do you eat an elephant? One bite at a time. How do we all get through this awful business? One minute, one hour, one day. at a time. Virtual cyberhug coming your way (( )).

  • Karenhappyquilt's avatar
    Karenhappyquilt
    Member
    9 years ago
    Please don't give up.  Right now it seems like this is impossible to cope with, but you will.  You will have chemo and cope.  You will come to terms with this in time.  But it's a terrible shock right now. Try and take this one day at a time. I might be naive but I suspect most oncologists know their medicine. Some have better bedside manners than others, but technically they are much the same.  If you can't afford private go public, they have good doctors and nurses. We are fortunate to have such a good health system in Australia.

    Very best wishes Karen 
  • Karenhappyquilt's avatar
    Karenhappyquilt
    Member
    9 years ago
    Please don't give up.  Right now it seems like this is impossible to cope with, but you will.  You will have chemo and cope.  You will come to terms with this in time.  But it's a terrible shock right now. Try and take this one day at a time. I might be naive but I suspect most oncologists know their medicine. Some have better bedside manners than others, but technically they are much the same.  If you can't afford private go public, they have good doctors and nurses. We are fortunate to have such a good health system in Australia.

    Very best wishes Karen 
  • sandramj's avatar
    sandramj
    Member
    9 years ago
    Questions:  Yesterday got results that cancer had spread into lymph node so off for tests Pet scan and appt with Dr Keith Horwood oncologist on Wednesday for discussions re chemo etc.
    Devastated and feeling really lost!
    My Dr referred me to this oncologist who is charging heaps and only getting back half from Medicare and I am wondering about going public.....
    Chemo -  two types - the old one that kills 80-90% but you lose your hair and its high dosage. OR the newer one that still kills 80-90% but it doesn't cause as many side effects, no loss of hair etc. But is a trial one?
    How do we get this information?
    How do I know a good oncologist with a high success rate vs a newby or someone who isn't updated?
    How do I ask the costs without seeming "TIGHT"?  we are seniors on a pension - this has cost $5000 already - do we need to sell my car or caravan  to afford the ONLY or BEST treatment?  
    So many thoughts racing through my head and I feel very sad that it seems that women over 60 with breast cancer aren't really wanted to survive by the govt taking all this funding away.  No more free breast screens   Can someone explain why? I would have thought we'd need them every 12 months from now on not have to go through private to have them done.  
    Im crying a lot with these results and am ticked off with the results as Ive NEVER wanted to see an oncologist EVER and certainly never wanted chemo.  Im afraid I may just give up and save the government heaps.... :(  Just to get it over with??? 
    Sorry Im sounding like a spoiled brat!  I feel like Im in a vortex that's sucking my life from me......  I don't think I can control this.....  Theres not enough time to research doctors, treatments etc and its all happening too fast, but does it have to?
  • melclarity's avatar
    melclarity
    Member
    9 years ago
    Sandra, Ive always been a Private Patient BUT in 2011 first diagnosis needing Radiation treatment I went public, and it was absolutely fine, I definitely wouldnt have gone private for that. 2015 2nd diagnosis no radiation as cant have it twice, but chemo I chose private as my Surgeon and Oncologist are private. THEN my recent Mastectomy/Diep Flap recon 5 weeks ago I used my private surgeon and Plastic Surgeon and went public, so I had no out of pocket. I couldnt afford it any other way. Chemo was covered by medicare and my health fund I had no out of pocket for that either. x

    I have a health care card too as am a Single Parent and though I work am a low income earner, if youre on the pension, your mammos etc., shouldnt be costing you at all? mine don't.