The wait is frustrating and worrying. And so many questions!
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KatWat
Member Posts: 13 ✭
Hello, I have been recently diagnosed and it has been a whirlwind of events. I had a lump on my left breast which I was confident was just a fibroadenoma but went to have it checked out anyway. The GP sent me off for a mammogram and ultrasound, then core biopsies of said lump. Whilst having the core biopsies the radiologist asked if I had noticed any changes in my right breast. I had not, neither had the GP. He said there was a lump there too and should be biopsied but I would need a separate referral. I booked an appointment for the following week. In the meantime I went back to the GP and the results from the scans and biopsies confirmed a fibroadenoma in my left breast and that the lump in the right was probably the same. We decided to go ahead with the biopsies. feeling confident it was benign I had no concerns abut the results. Until, taking my daughter to her first day of high school I get a call from my GP reception suggesting I bring someone to the appointment with me! I felt my world cave in. Thank goodness my Mum was with me. I had breast cancer.
Everything happened so fast initially. I was diagnosed on the Tuesday, saw the breast surgeon specialist that Thursday and had surgery on the Monday! Now I'm home 1.5 weeks after surgery, relieved that the cancer has been removed but frustrated waiting on a treatment plan. It was stage II, ER+ and PR+, and node positive. Do I opt for chemo (there is no way I can afford the oncotype DX testing)? Do I use the cold cap thingy or just shave (maybe I'll dye it pink too!)? What about dose densing (more chemo over shorter time so I can get back to normal work sooner)? Radiotherapy? Hormone therapy? The waiting is frustrating, I just want this all to be over and done with. I'm worried that I won't have enough sick leave left for those days I may need off during treatment. How will I provide for and support my darling daughter? Will I be able to pay my mortgage and other bills? How much will the treatment cost?
There is so much going through my head right now...
Sorry I went on and on... Just needed to get it out.
Everything happened so fast initially. I was diagnosed on the Tuesday, saw the breast surgeon specialist that Thursday and had surgery on the Monday! Now I'm home 1.5 weeks after surgery, relieved that the cancer has been removed but frustrated waiting on a treatment plan. It was stage II, ER+ and PR+, and node positive. Do I opt for chemo (there is no way I can afford the oncotype DX testing)? Do I use the cold cap thingy or just shave (maybe I'll dye it pink too!)? What about dose densing (more chemo over shorter time so I can get back to normal work sooner)? Radiotherapy? Hormone therapy? The waiting is frustrating, I just want this all to be over and done with. I'm worried that I won't have enough sick leave left for those days I may need off during treatment. How will I provide for and support my darling daughter? Will I be able to pay my mortgage and other bills? How much will the treatment cost?
There is so much going through my head right now...
Sorry I went on and on... Just needed to get it out.
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Comments
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Hi Kathleen MW
sorry you have need to join us here....
it is frustrating waiting
Do you have a My Journey Kit ?
Do you have a Breast Care Nurse ?
If you have superannuation there is often income protection built into it. Others will help with this...
It is ok to come on here and go on and on as you put it .... we accept venting ranting crying laughing etc.... we are a supportive bunch and we will all help you navigate the roller coaster ride.
here are some links to help you with things I asked above ....Below are a couple of links to help you find your
way around the forum and also how to find a breast care nurse and how to order
a MY journey Kit if you haven't got one yet.It can be a a whirlwind when we first get a
diagnosed.... Breathe and take it one step at a time.The what and how thread.
http://onlinenetwork.bcna.org.au/discussion/14879/the-what-and-how-thread/p1
Breast Care Nurses
https://www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx
My Journey Kits and other
resources.https://www.bcna.org.au/resources/
BCNA Helpline 1800 500 258
If you have any questions, concerns or require any further information
hugs
or support please call 1800 500 258. The Helpline is open Monday,
Wednesday and Friday from 9 am till 5 pm EST and Tuesday and Thursday from 9 am
till 9 pm EST.
soldiercrab3 -
Hi @kathleenMW what a whirlwind ride you've been on! I'm not surprised you've got so much going on in your head. It's so frustrating waiting for information. I'm also fairly newly diagnosed - in January - but for a stack of reasons I've put off my surgery until the first week in April. I'll be having a double mastectomy with expanders. Will probably need radiation and will definitely need hormone therapy. Won't know about chemo until node info.
If I can offer you any suggestions at all I'd say take deep breath and take one step at a time, use the waiting time to do lots of research but stick to reputable sites like Garvan and Cancer Australia, BCNA, Mayo Clinic etc and read as much as you can from other women's experiences on forums like his one. I've learned so much from this forum and it's helped me to go to my dr consultations armed with lists of questions that I never would have thought of asking. Even though I haven't had my surgery yet, I've read a lot about how positive psychology has a great effect on healing and recovery so being proactive and trying to minimize the anxiety can really help. Don't be afraid of asking for medication that helps you with this - it can really help to relax you and put you in a good headspace.
Even though I've chosen not to tell my friends and extended family about my BC until I'm closer to surgery, I have talked to my boss and he has been incredibly supportive, which has taken the issue of what will happen at work, off my list of concerns. Are you able to do something like that?
Also having the financial concerns causes so much anxiety. I'm not sure if it helps, bit I've been very pleasantly surprised to find how quickly I've reached the Medicare safety net, which has really helped financially as you get so much more back. I guess there has to be a silver lining somewhere!
Wishing you all the best for the road ahead! Xxx1 -
@SoldierCrab Thank you!
I do have the Kit and a Breast Care Nurse... I think this is why I now have so many questions and worries, I'm overloaded with information.
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Sorry to hear yet another one diagnosed. I would suggest you ring bnca on 1800500258 and do a search for your nearest Mcgrath nurse who can do a bit of running around finding info for you as well. https://www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx
It can all get bit overwhelming especially in juggling finances. Best wishes for you.
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My local nurse had a group of ladies making such things as drain bags and support pillows and they were free to have through the McGrath nurse. She also organised a look good feel good day where there was wig info and sensitive skin lotions, and makeup. I came home with a heap of free makeup. 2
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@Eastmum Thank you! I can't begin to imagine your circumstances and the even longer wait!
I'm already on medication for PTSD (another story and well managed) and thankfully, have a great psychologist - although she's been on leave so not up to date with my diagnosis. So far, work has been supportive, I will have to talk with them more about my options.
There have been some positives with this diagnosis though... After years of struggling with the guilt of separating myself from an abusive, narcissistic father, and the hope of having a loving and supportive relationship with him one day, I can now completely let go of him without feeling guilty. It is such a relief! On informing him of my diagnosis and asking for his confidence in not telling my daughter's father, as I wanted to tell him myself, in my own time - he rang my ex right away, then rang my Mum to tell her what he'd done and told that my ex was a far better father than I was a mother! No well wishes, nothing! Now I am able to move on, focus and returning to good health (although I don't feel unwell as yet, just sore) and give my attention and love to the people I know love me unconditionally. Phew!
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Kathleen - you are amazing! I love that you've turned such a negative experience into a positive.
Delaying my surgery is all good. It's totally my choice because it will have the least impact on my family and work this way, and I know that my surgeon would never have agreed to the delay if there was a huge danger in waiting
Keep us posted on how you're doing. Sending you loads of good wishes! X2 -
@Sister
@melclarity
I know you ladies looked at income support for during this time can you help Kathleen MW with this please.
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Hi @Kathleen M W, I'm so sorry you've had to join us but I'm glad you've reached out for support.
Deep breath Honey - this is the most difficult whirlwind time. You will have a much better idea of what to expect after your appointment with your oncologist. Take your Mum - it's hard to absorb everything when you are so stressed. Discuss all these concerns with your onc and they will help you navigate all this - as will your breast care nurse.
Im thinking your psychologist may have previously given you some strategies ??? Get in and see them as soon as you can. You're going to need an outlet for all this.
It sounds like you've had a lot to deal with prior to your breast ca ( yeah some of us get it all) . We are all here for you.
Can you check if you've got income protection attached to your Super? Biggest hugs. Keep in touch with us. Xx0 -
I'm still in the lengthy process of applying for income support through my super. So, check your super scheme. Mine gives 75% of my income for up to 2 years once there is a 30 day period of not working (this can be done using rec or sick leave) You just have to get everyone under the sun to sign things. However, once you go back to work for a day, you have to start the waiting period again. I'm using a mix of private and public. And fortunately, We hadn't gotten around to cancelling health cover.
The chemo centre I'm using offered cold caps at no extra cost or inconvenience, so I'm giving them a go. Easier, for the kids, I think. As for what treatment you choose, you really need to have your questions ready and someone with you who is good at picking stuff up.
My initial diagnosis was 2.5cm ILC, probably contained. First surgery and sentinel node biopsy showed 4.5cm without clear margins and 3 nodes involved,OR & PR+, HER-. That meant mastectomy and axillary dissection. Cancer is probably gone but there could be floaters waiting to land somewhere else. I've just started chemo which hopefully will give me an extra 5% longer survival ( absolute not relative). When this finishes, I will have rads which offers another 5% at least. ILC doesn't follow the predictive tools they use, but it seems worth the pain. Amazingly, the doctors all agree as they call me young!0 -
@Kathleen M W
My boyfriend of 9 months and a covert narc was gone within 6 weeks of my diagnosis.
It's sad that it took BC for his narcissism to become so obvious. He had our entire future mapped out.
I walked home from my first AC chemo cause he was still complaining about me running late in the morning (of my first ever chemo).
But I'm ever so grateful to my diagnosis for pointing out the bleeding obvious.
Good luck and best wishes.
Narcs never, ever, change.4 -
Hi there love firstly. Just breathe. You need to take each day at a time. Once you get a plan of attack you will feel better the and oncologist will be the best one to advise you on this. Trestment is different for all of us. I was triple negative stage 2a grade 3 and I had dose dense didn’t bother with the cold caps and rocked the bandanas. As for your financial situation. Check your super for imcome protection. There are all options with accessing your super to pay your mortgsge. It’s a bit of a pain in the arse but worth pursuing. And also the bank has leniency for you if you struggle to pay your mortgsge so check I’m with them too. And also are you a single mum? As you can talk to Centrelink about accessing payments too. Don’t panic it all is doable. Make sure you take help from anyone that offers it and perhaps a friend can start a go fund me page for you if you need it or start one yourself and don’t be ashamed or worried about it it either you gotta do what you gotta do. Also your bc nurse and the social worker can help you too. Where abouts do you live love ?. I know of a few options in Brisbane if you are near me ?? And what is the oncotype DX testing you mentioned ?? You’ll be able to get all your trestment through the public system too. And try not to google anythimg. There’s too much conflicting info out there and it is a very good time to re evaluate your life and “take out the fucking trash” especially those people who drag you down. Biggest hug. Margie xx
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This link could be helpful for you and your daughter
https://mummyswish.org.au/
The cancer council also have social workers thst can help you navigate through the endless hurdles.
https://www.cancercouncil.com.au/74262/cancer-information/after-treatment/when-treatment-finishes-after-treatment/practical-support-services/
I hope all goes well. Dose dense treatment is reserved as needed for the cancer not about speeding through it. Normal chemo is hard enough. Not everyone can work during chemo so its important to look at what you can do if you aren't able.
As to the father in law. Good riddance. I had trauma from a workover incident ...my cancer enabled me to just let that shit go and move on. It was one big positive about the whole experience and meeting some wonderful people on this site was another.1
