Everything seems to be wrong
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@lovemoon you have received such wonderful support from members already, its is great to have this community to support you during this time. I thought I would add to the responses as I noticed you mentioned that you didn't have a breast care nurse; you may like to ask your hospital if it is possible to be referred to one or you can also look on McGrath Foundation’s breast care nurse directory to find a breast care nurse in your local area.
The My Journey article 'DCIS and your treating team' may be helpful to give a snapshot of the multidisciplinary team that may be part of your journey. In addition there is a great article on 'Emotional wellbeing and DCIS'.
https://myjourney.org.au/article/2858
https://myjourney.org.au/article/2895
Please do not hesitate to contact our Member Support Team 1800 500 258 if you have any questions. Take care.
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Wooho! That is Great news @lovemoon and peace of mind for you xx.... yep - just take every day one at a time .... and the next week will fly by xx. You'll be amazed at how much better you feel after the surgery!
What area do you live in? Town/City? You can put it in your Profile - any members living nearby will be able to assist you with existing services in your area - and maybe even arrange a meet & greet, covid willing!
In the meantime, check out this thread from last year .... it covers a whole lot of areas in the forum (your garden, pet, art & craft & even some 'funny threads' for a giggle!) It also has links to what to take to hospital with you, and questions to ask your health team ....
https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest
take care & all the best1 -
Here’s an update of my surgery. It went well and it’s been 10 days. Only one lymph node from each side was taken out. The pain has been manageable, only need panadol, and I stopped taking it since yesterday since it’s not that bad.
But then, just when I thought I just needed to focus on my recovery, the pathology results showed that I did have an invasive tumor on my left breast and a very tiny mass on the left sentinel lymph node. It was missed during the initial biopsy. Now, the surgeon recommends 4 cycles of chemotherapy! This is so shocking! It’s like going back to that dark pit when I was first diagnosed... 😣2 -
Oh darl ☹️.
My pathology post DMX also showed a micromet in one sentinel node. The surgeon said I might need to do chemo because of that, and also radiation. Both my medical and radiation oncologists highly disagreed with him. Medical onc said chemo was recommended only due to my young age, but he was very comfortable with me not doing it, so I didn’t. He said the micromet was not a threat at all.The radiation onc said the only reason I needed radiation was because of the surgeon’s sloppy work. He left unclear margins that they saw on the CT scan for radio prep, but he denied it. So my onc and new surgeon both said it might be a good idea to have the radiation to get rid of any possible cancer cells in the suspicious tissue left behind on both sides, NOT because of the micromet. She was actually very annoyed that he was giving me radiation advice, since he’s a surgeon and that’s not his field. Anyway, I did have the bilateral radiation, skipped chemo and on hormone blockers now.2 years NED 🍀♥️.1 -
@lovemoon
Chemo is such a big bogeyman that your feelings are quite understandable. But reactions are very variable - I had four rounds of A/C and 12 of Taxol and was fine. You can and should discuss your surgeon’s recommendations (have you been referred to an oncologist?) but it’s important that you get the best informed advice and consider it carefully. You are still focussed on recovery, it’s just a bit more complicated. Best wishes.1 -
@FLClover Thank you for sharing your experience with me. Looks like I should really talk to the medical oncologist and seek out further opinions.
@Afraser Your kind words and experience have given me a lot of courage! Yes, chemo is such a scary word that I drag to even think of it until today (4 days after I was informed of the results). I wanted to update everyone of my surgery here but thought better wait till I got the pathology results as I thought I’d be all cleared by then. Then, got the totally unexpected results. The surgeon said she’ll set up an appointment for me with a medical oncologist.
I’m so glad I have brought all these up here and both of you @FLClover and @Afraser have led me to some more positive thoughts now!!❤️❤️1 -
@lovemoon
You’ll have a better idea of what you want/need after the first treatment but the following may help:
*Have someone to take you to day oncology and home first time - you may be absolutely fine, but just in case.
*Many encourage drinking lots of water, ‘to flush through the chemo’ but since no-one told me to at the time, I just drank normally. Being well hydrated is important for getting to veins, but having to go to the toilet while on a drip is a pain in the neck! I sprang a leak once in the toilet and had to be rescued by grinning oncology nurses in gumboots and rubber gloves! Also, I wanted to be sure the chemo was doing its work!
*Oncology nurses are a special breed of wonderful - they’ve seen it all, usually are very funny (humour really, really helps with all this stuff!) and will look after you, check you beforehand.
*You can read, doze, listen to music or whatever suits - remember one arm will be a bit occupied. You’ll probably be offered a drink and a snack.
*Count the treatments down - every one completed, one less to be done. It may pass more quickly than you imagine. Side effects vary - talk to your oncologist about what to expect, whether you can use cold cap or other cold treatments to protect hair and extremities.
Best wishes.2 -
@FLClover may I ask you some further questions? When you said your medical and radiation oncologists disagreed with your surgeon, were they referred to you by your surgeon? From what you’ve written, seems like you switched to a new surgeon, can you switch to a new surgeon? To be honest, I’m not too happy with my surgeon, she did a great job with the surgery but patient care is not exactly forthcoming, like I’ve waited for almost a week now, this appointment with the medical oncologist is still not happening. I called the clinic this morning and they asked me to call again tomorrow. I don’t understand why it takes so long to get me that appointment and why should I keep chasing them up for something that they’re supposed to do.
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