Newly diagnosed
nov13
Member Posts: 5 ✭
Hi. Feeling very frustrated. My journey so far...mammogram 13th nov, further tests n biopsy 30th nov, results 4th dec provisional grade 2 mucinous carcinoma & intermediate grade ductal carcinoma in situ also present. Invasive carcinoma is er & pr positive Her2 IHC positive Her2 SISH is pending. Surgeons appts 12th dec cancelled, 19th cancelled, 9th jan cancelled. Next appt is now 31st jan. Have contacted breastscreen and the nurses will look at this when they return next week. Am seeing my gp this arvo but not sure if she can help. I guess just wanting to know if this is an acceptable timeline?
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Comments
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Dear @Lowood
A month from biopsy results isn’t so
unusual, particularly at this time of the year but repeated cancellations are very frustrating. It’s certainly worth talking to your GP about the stress factor and the need to
make the next date stick! It’s most unlikely that anyone considers the delay to be potentially harmful physically, but it’s easy for busy surgeons and even nurses to
forget about the emotional side of things. Best wishes for the next date.
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So Sorry to see you join our exclusive little club, @nov13
Sadly, getting diagnosed at this time of year can be really tricky in getting stuff 'done' in a timely manner, as most surgeons/specialists are 'off' over the Xmas/New Year period - with the middle of Jan being the common 'return to work' date.
So - your timeline isn't too bad - other than obviously very upsetting for you at the cancellations & I feel for you xx. I know that I would have been in tears!
This disease really mucks with your brain, even more than your body, I reckon Definitely mention your anxiety levels to your GP xx. Are you sleeping OK?
Are you going public or private? I am guessing public? I actually decided to go private for my surgery, to make sure I got in as early as I could. Everything else - Radiation & Medical Oncs and treatments have been in the public system & they have been terrific.
The cancellations could have been for a variety of reasons - possibly even the surgeon getting covid, as it is on the rise again ... It is great that you can talk with your breast care nurse & hopefully they intercede on your behalf and you get a new appt soon that isn't cancelled, hopefully earlier than the end of the month!
Am I right in thinking this will be your FIRST appt with the surgeon? The Breast Care Nurse may be able to point you to another surgeon, tho in the public system, I am not sure how much choice you may have there. When you DO see the surgeon, he will probably organise a Sentinel Node test prior to surgery (to see which nodes the BC is draining to) .... which could be in the next day or so .... then hopefully the surgery would be shortly after.
Try & keep yourself as busy as you can in the meantime, doing what you love doing!! Maybe even start cooking & freezing some meals so you have some ready, post op! xx
My own 4 month timeline was:
Lump Found in Oct (after clear MG just 4 months prior!)
MG & US in Nov - which were uncertain of it being BC
Biopsy between Xmas & New Year
Results confirming BC in 1st week of Jan
Saw surgeon & had surgery in Mid Jan
take care & all the best xx0 -
I am feeling your pain. I was diagnosed mid October and had lumpectomy mid December. I know not as long as you, but all waiting is horrible.
It is an agonising wait where you have nothing but time to think about it, but the surgeons are run off their feet and then on leave over Christmas.
They found something in my lung in the pet scan so I had to have a lung biopsy prior to surgery (was originally booked in for surgery mid November but they wanted the biopsy first
so surgery was cancelled - that felt devastating, but we do get through). It wasn’t lung mets thank goodness. I am now waiting on chemo -
you need to heal prior to starting. It is teaching me patience (something I am not good at), since we seem to be always waiting for something.
It has been 2.5 weeks since surgery and I am now taking off my own dressing since I won’t see the surgeon for another week and the itch under the tape is nearly unbearable. Christmas shutdown is the pits. It is certainly a rocky road.My surgeon kept on telling me that the time wouldn’t make much of a difference since it had already been in there for a while (that wasn’t what my head was telling me though 😂). They do this a lot and know what they are doing so we just have to trust them. I am through the private sector. I was going to have to wait until mid January when the surgeon returned but they managed to squeeze me in on the last surgery day prior to Christmas. I am so
glad itat they did and that it is out of me, but the timing is really bad and I am just winging it really. I’m not sure that I should be taking off my own dressing but don’t want to leave it on.As Arpie said I did a lot of prep cooking in that time and tried to get myself as fit as possible prior to surgery. Oh and yoga, that is great. Also, speak to your breast care nurse, they can really help mentally and by contacting your surgeon.Have you had a Pet scan yet?I truly hope you get in soon, the wait is truly awful. xx1 -
Great news that your lung results were clear. I too will have to learn to have more patience. On a positive note i was contacted yesterday by a breast care nurse who was quite upset she had only just received my file. She will be pushing for me to be seen earlier and I will hear back from her next week. No I haven't had a pet scan so guessing that will come up when I do finally get to see someone and find out my treatment plan. I found out about the cancer about a week after we sold our house (really bad timing) so have been busy packing. We move temporarily to our sons in our caravan in a week then 2 weeks after move into the new house. Things will feel more settled then and not as stressful.
Take care yourself xx1 -
That is bad timing, moving is really stressful by itself. We moved into our new home a year ago and I am very familiar with the stress of this. You poor thing!! Certainly a lot going on, but there’s never a good time to find out you have cancer though 😂 I agree that once you are in your own place it will feel better.I try to take things a day at a time and deal with the hurdles as they come. Right now I am going out to have an ultrasound for a clot in my leg since it has been incredibly sore at night since leaving hospital. I had the anti-clotting injection done in my thigh and it is in this area. Hopefully it’s just muscle damage that will heal in 4-6 weeks. Like we don’t have enough to worry about 😂 Good luck with an earlier appointment! You take care as well. x2
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Sorry to hear that, I am also newly diagnosed. I managed to see a surgeon very soon, but she asked me to do MRI, CT scan, PET scan, Ultrasound to put a clip..and chemo, my next appointment with her is in March...which is 2 months later
She insisted I should have chemo before surgery as my lump is big. I m very worry if the disease will spread.2 -
https://www.bcna.org.au/resource-hub/articles/surgery/
The link above will give you a better understanding of why Chemo before Surgery for you2 -
@Joanne213 I am sorry to hear you are going thru all this too. It can be very hard and stressful to get your head around everything that is thrown at you in a short space of time. Because of the type of cancer I have I will be getting chemo first as well. My breastcare nurse got my last appt that was cancelled reinstated so saw my surgeon yesterday. I will find out more details after their team meeting Thursday but have at least now appointments for a bone and ct scan next week as well as surgery to have a porta put in. Then starting chemo, hormone therapy drugs, surgery then radiation.
Take care & all the best x1
