Waiting for my oncologist appointment is doing my head in

lady_with_green_eyeslady_with_green_eyes Central Coast NSWMember Posts: 10
edited July 1 in Newly diagnosed

My GP sent me for an ultrasound after I had an appointment to get lumps in my armpit checked out. The ultrasound was on 14/6 and 4 smaller lumps were found and a total of 2 larger near my armpit.  I was asked to come back for a biopsy and mammogram. Interestingly the mammogram was completely fine - no evidence of anything. A  core biopsy was done on the larger armpit lumps and 2 FNA on the smaller lumps (I’m fairly certain that’s what happened) on 18/6/19.

I got the news of my diagnosis after work on Thursday 20th June and since then —

Blood tests & CT scans 21/6 Scans clear

Breast surgeon appointment 21/6

Brain scan and full body bone scan 24/6 All clear

Second appointment with breast surgeon 25/6.

Went back to GP to to get medical certificate and copies of pathology 27/6

Second biopsy on smaller primary tumours & 4 clips inserted 28/6.

At my second appointment my breast surgeon said it appears there is cancer in my LNs and she will discuss my case with the MDT at their afterwork meeting on 27/6, she also said I should get a phone call by Friday 28/6 to set up oncologist appointment as my treatment will start with chemo. 

It’s the waiting and waiting and waiting for my oncologist appointment that is doing my head in. 

I called Friday and today and the people who answer the phone are lovely but say they will call me after my doctor goes through my case. The second biopsy results probably are completed. I don’t know all the details yet and I feel that after second biopsy I need to be open minded and prepared that my BC details may change. 

But what I do know from the updated (24/6) first biopsy report. Right breast. stage II grade 3, invasive carcinoma, ER weakly+, PR-, HER2-

I’m trying to stay positive but I feel frustrated. Family and friends have been supportive & caring.

I’ve had a couple of meltdowns in the last 10 days & I’m home alone tonight and dwelling on my thoughts. 

How long is reasonable to wait for an appointment or what have others experienced?

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Comments

  • SisterSister Adelaide Hills, SAMember Posts: 4,067
    It's quite possible that your surgeon doesn't work at her clinic on Mondays and that is why you haven't heard.  Or it could be that she is trying to line up the best onc for you.  I would give it a reasonable time this morning and try her rooms again.  If they can't give you any info, explain that you were expecting to hear by late Friday and that you're not coping with not knowing what is going on.

    The wait is always hardest.
  • ZoffielZoffiel Regional VictoriaMember Posts: 2,765
    A week or so is not a long time when it comes to the actual cancer. But it can be a lifetime from an emotional perspective. 
    Understandably, you want to know what is going on and what happens next. Unfortunately, if we learn anything from breast cancer, it's how to wait. Which is both distressing and infuriating. Many of us get to the stage where we are hissing down the phone, 'You don't understand, I want this sorted NOW!' Which doesn't usually work. The machine moves at its own pace.
    Hang in there. MXX
  • Brenda5Brenda5 Burrum Heads, QldMember Posts: 2,276
    I didn't actually meet my oncologist or radiographer until I had healed from the surgery. The surgeon just told me I would require oncology later.
  • AfraserAfraser MelbourneMember Posts: 2,294
    Ditto, I had surgery and was then referred to an oncologist. Could have selected someone else but I felt confident in him (he and my surgeon work quite closely together) and it’s proved to be a good relationship. My surgeon carefully did not speculate on treatment after surgery. As the final results post surgery were a little different to those indicated by biopsy, making decisions at that juncture seemed quite sensible. Best wishes. 
  • youngdogmumyoungdogmum Gold Coast Member Posts: 166
    I too had surgery first, but based on what I know about the health system as a nurse and with a friend who got chemo first .. I would say if they haven't phoned by tomorrow I would call. They may want to do the MDT first, discuss your results and then have an appointment with you once they all have agreed on the best plan toward (they being surgeon, med onc and rad onc if you need radiation) 

    Weve all been there so can all relate that this is the hardest time ever. The waiting is awful. 

    Please be reassured that if chemo is going ahead first, provided the rest of your health is good, you have no holidays planned in the next few weeks you would like to still do and you don't have to consider fertility preservation (you haven't mentioned your age) chemo can and does start relatively qucikly, ie within a week. Even if you need to have a PICC/port placed it happens very quick. 

    Try to spend time with family and friends this week doing stuff completely unrelated. Reassure them when they ask what's the plan what's the plan that you don't know yet but it's normal at this point in the game :) 
  • lady_with_green_eyeslady_with_green_eyes Central Coast NSWMember Posts: 10

    Thank you everyone and especially youngdogmum 

    I’m 57 y.o.and work full-time but haven’t been to work since my diagnosis. Tbh I am worried about losing the plot - I can hear my heart thumping in my ears. 

    I decided today I will try and focus on other unrelated things and not calling any doctors. 

    My health is pretty good and if I didn’t know about the bc I would think I’ve never been better physically.

    For me, anxiety stems from my lack of knowledge for everything to do with bc, treatments etc..once I have more understanding I am hoping things will settle. 

    I have been reading everyone’s posts and all the discussions on this forum and will continue to do so. 

  • arpiearpie Mid North Coast, NSWMember Posts: 2,766
    So sorry it is taking this long to get to see your Onc, @lady_with_green_eyes - as everyone has already said, the waiting is the pits!!   It really does your head in - specially in the early days of finding the lump & diagnosis.  Once you've had your surgery, a lot of that fear actually just slips away.   

    I'm like you - when diagnosed, I looked and felt ridiculously fit & healthy & people found it difficult to accept that I was in fact, ill!!   It really is a roller coaster ride of emotions - and totally normal to have meltdowns and tears now & then.  But  there WILL be good days as well - so by keeping busy now and throughout the treatment as best as you can - will  help you stay grounded.

    Try not to use Dr Google - as a lot of the info there can be very dated and everyone's case is totally unique & it may well confuse you.    Throw up any question that you have, here and someone will jump on board & give an honest answer, or suggestions on how to control it.

    If you have any passions - painting, jigsaws, whatever (mine are ukulele and fishing!) get stuck into them, as a busy mind will push out the 'what ifs'.

    All the best with your approaching chemo - make sure you drink a heap of water afterwards, to help flush it out of your system quicker.  You will notice a pattern after a couple of sessions - when my husband had his chemo, he usually felt very tired after about day 3 or 4 & would put himself to bed for a couple of days.  Then he would pick up again, ready for the next session!

    take care, thinking of you xxxx



  • kmakmkmakm MelbourneMember Posts: 7,183
    Hey green-eyed lady, my diagnosis threw me into an intense head spin too (specific circumstances, read bio for summary) and I remember all too clearly that heart pounding feeling. I knew I'd need counselling straightaway and in the initial week following diagnosis I saw a cancer nurse counsellor twice. She was my first step on that road and it was helpful at the time. I eventually moved onto a community funded breast cancer psychologist, and now see a clinical psychologist. It has helped. It's no 'cure', but if you feel that you are being emotionally overwhelmed to the point of not functioning, it can be of great assistance. A safe space to express yourself, and get some practical tips on how to manage your emotions.

    Unfortunately there's no way round them, you have to go through it. I was told at my very first appointment to lean in to the pain. I didn't understand at the time but I do now.

    Like you I was 'well' when diagnosed, and after an extremely difficult and stressful few years had started to get my life in order. I had plans... My diagnosis threw a spanner into those plans, like it did for all of us.

    It is what it is and we have to deal with it, whether we want to or not! Be consoled by the fact that we have the best survival rates in the world here, and focus on the end game, a cancer free life.

    It's really easy to say but much harder to do I know! In many ways you are in the absolute worst bit now, the not knowing. It will get a whole lot better when you have a treatment plan. So right now, distract, distract, distract. I watched a LOT of stupid sitcoms when I was where you are now. Bake, work, exercise, sew, do yoga, see movies, play music, hang out with friends, anything that will take your mind of BC for even the shortest time.

    We're here for you. Biggest of hugs, K xox
  • lrb_03lrb_03 Member Posts: 1,076
    @lady_with_green_eyes, like your current plan, I started my treatment with chemo. Once the wheels do start moving, they'll move quickly.  Although at the time I felt like it took forever, I can now look back, with the benefit of 4 years hindsight and realise that from diagnostic mammogram to first chemo was 4 weeks and 5 days. From the time I saw the oncologist,  it was only 10 days to the start of chemo, and I had a Portacath inserted in that time.
    Easy now for me to say, but take a breath. It will happen.
    Hope you had a good day today
  • Michele BMichele B Member Posts: 62
    @lady_with_green_eyes, everyone on here has just given you the greatest advice, not much I can add. Four and a half years post diagnosis, I can remember like yesterday the intense anxiety you are feeling now. Like others have said in some ways, the intensity of those first weeks and the waiting, waiting, waiting, can be some of the most difficult times.  Once the ball starts rolling, and treatment starts you feel a little more in control. Wishing you all the very best with your treatment and the journey ahead. This forum really is a place of great friendship and support, keep in touch here and you will always have someone to offer you a wise and kind word. Nobody understands like those who have walked the same path before you. Take care, big hugs xx
  • lady_with_green_eyeslady_with_green_eyes Central Coast NSWMember Posts: 10

    A big thank you for all the support on this forum. It has been reassuring to me.

    I have my oncologist appointment —Monday 8:30 am.

    Weirdly feeling relief, but lots of annoying thoughts too e.g. does my second biopsy reveal anything (I don’t have all my results).  What should I expect at this appointment? What questions should I ask? 

    On a completely different note:  My granddaughter is 3 and half years old and I had a regular Friday afterwork arrangement. I would pick her up from day care and play and cook dinner with her.

    A couple of people have said I shouldn’t see her when I’m having treatment because of the risk of getting sick.  Is this true?

  • kitkatbkitkatb Member Posts: 412
    @lady_with_green_eyes ;    I'm glad you have got your appointment sorted for Monday .  With Chemo everyone is different.   With me I found that  it kicked in on about the 3 day and I generally felt the worse from day 3 to about day 10 or 11. A lot of people have the injection ( neulasta I think it was called ) the day after chemo which stops your immunity plummeting too low and increases your white blood cell count.   I was on TC chemo regime which meant 3 week cycles. Your Onc will probably advise you that you will have a low immunity period which leaves you very compromised to catching all sorts of bugs lurking around generally day 7 to 10 is the worst for this ( one of the worst places is the doctors surgery  )  i would imagine day care wouldn't be much better.   I avoided most places until week 3 when I was generally feeling a lot better and made a point of getting out the house just for my own sanity. I had my chemo over winter as well last year so a few flu's and colds around. After saying that other people manage to have chemo and work part time .  It will be a just wait and see how you are travelling.   there is a good thread on here giving a few suggestions for what to have at home which might be handy for you going through chemo.  Worth a read.   Good luck with everything and let us know how you go on Monday.  xo
  • youngdogmumyoungdogmum Gold Coast Member Posts: 166
    Fantastic to hear that you've gotten an appointment :) 
    Most first oncology appointments are very explanatory and usually cover most of the questions you have; take someone with you who can write stuff down so you can listen. I guess one question I've thought of from your story is "why chemo first instead of surgery?" 

    I imagine your granddaughter is a great joy in life and trust me, when you're in the midst of chemo those joys bring you a lot of comfort. You might not be able to commit to the Friday pick up anymore - will depend on your regime (how frequent and the day of treatment you get allocated to) and how chemo affects you. It effects us all differently. For example, I get chemo on Tuesdays. My first combo of drugs I was pretty yucky from the very next day, this current drug Wednesdays Im great its Thursdays everything turns bad. You wont know until you start.

    Spending time with her if she has a virus during chemo would not be advisable, as kitkatb said we try to avoid sick people/crowds etc...but remember there's men and women who have their own young children and go through chemo, they manage. Some people still work and manage to not get sick. 
    But I don't think excluding her for 2-6 months (depending on your chemo regime) would be good for your mental health personally. 
  • AfraserAfraser MelbourneMember Posts: 2,294
    It's all really variable - plan for the worst but hope for better things. I was one of the lucky ones - I did have side effects, but not fatigue or nausea. I worked through 6 months of chemo - not brave, just not sick. Even in an open plan office, I didn't catch anything. Blood count remained fine throughout. The first two or three weeks will give you a better idea. As everyone says, if you do have difficult side effects, you are still likely to have better and worse days and can plan a little bit accordingly. It can seem like treatment will go on for ever at the beginning, but it does pass. Best wishes.
  • arpiearpie Mid North Coast, NSWMember Posts: 2,766
    edited July 3
    @lady_with_green_eyes   Your blood tests during chemo will also give you an idea about staying away from people - and also just the general way you 'feel' will let you know.    The chemo knocks out your neutrophils/white blood cells - and when they are 'low' - that is when infections, bugs, cold & flu may take hold.  They need to 'build up' again, before chemo can recommence.   You may even need a break from chemo if the neutrophils remain low, until they are high enough to continue treatment.  It happened to my husband just the once. 

    Make sure you ask the Onc specifically about this - whether you can have your granddaughter visit during treatment.  It may be an idea to record the meeting on your phone as well - as it is very easy to forget a lot of the points raised.  This way, you can go back later & listen to it again.  There are heaps of easy Apps you can download for recording speech.

    You will notice a pattern after a while - and when the neutrophils are 'low' - that is when you should stay away from anyone who may have bugs - and sadly, kids are famous for it.

    Some people become quite nauseous with chemo & anti nausea tablets/medication may be be prescribed for you.  If it is not mentioned - make sure you ask about it, at your meeting next week!

    Speaking of which - Great news that you have your appointment on Monday with the Onc.   Woohoo!   I hope that you bond with them.  Sometimes, if you 'aren't comfortable with them', it is well worth changing to someone else.  My 2nd Onc is wonderful.

    All the best - we'll be thinking of you xxx
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