Logistics of treatment

Outra

I was diagnosed with invasive breast cancer a few months ago (ER positive, PR positive & HER2 positive) and am struggling to move forward with any of the treatment options offered to me. One of the reasons is logistics as I live in a remote part of QLD. My nearest hospital (2hr drive) doesn’t offer cold cap treatment and for mental health reasons (associated with an ongoing chronic condition) trying to keep my hair is super important to me. I’ve been offered cold caps in the public system in Brisbane but as I need weekly chemo treatment they want me to relocate there for approx 3 months chemo initially. Plus then back to Bris for a surgery and for 6wks rads (both of which have to be done in Bris). Apart from the financial implications, I just don’t know how workable it is to relocate with a young baby and without my partner (who has to stay home for work). I don’t even know where to begin with organising the logistics and have zero energy to coordinate this as am totally exhausted all the time. 

My surgeon and oncologist have been fantastic but they don’t seem to understand that I can’t just start chemo asap as these huge logistical hurdles need to be figured out first.

Sorry for the long post but I’m really struggling xx

AllyJay

I'm not sure if I've read this correctly, but are you saying that you were diagnosed with triple positive breast cancer a few months ago, and that you haven't had any treatment whatsoever, whilst you try to coordinate logistics  so that you can  try to keep your hair?  I sincerely hope that your grade and stage haven't increased in the interim. My hair was very important to me too...I  used to sit on it. I was known as Dave's wife, Jesse and Katie's mother and The Lady with The  Long Hair. It was a huge part of my identity...huge...but  not so important to me that it was worth dying for. Yes, I lost my hair, yes I was as bald as a billiard ball, yes a year later my family call me Albert (Einstein), due to me having a fluffy silver white fuzz exploding out from my head, but I'm alive and No Evidence of Disease. I just spent another Christmas with  my only grandson, and have every chance of walking  him to school on his first day in four years time. I sincerely hope you'll be walking your young baby to school on their first  day.

Afraser

I hope some others here will be able to suggest some possible ways to help you in what is clearly a very difficult position. Your surgeon and oncologist simply want to start treatment. They may understand some of the difficulties you face but their first priority is your health. Unfortunately there doesn't seem to be any way of knowing how cold cap will work for an individual until you start. Some have had wonderful results but not all. Having chemo "locally" still needs some organising. Have you talked to anyone at the Cancer Council or BCNA about what support may be available?

Zoffiel

The cold caps are not at all reliable. In a great many cases they do not work, or provide unsatisfactory results.
Your reasons for wanting to keep your hair are your own business, but be very careful of pinning too much hope on an unpredictable process. 
None of us want to lose our hair. I've done it twice and while I can tell you it isn't as bad as you expect, you won't believe me--that is something we all have to work out for ourselves. I'm more comfortable walking down the street bald than I would be wearing shorts in public. I'd die of shame. Thankfully none of my treatment required me to bare my legs to a critical world.

If you are going to take much more time figuring this out, the chemo may not be worth the trouble. We all have to make these decisions and most try desperately to bargain or deal their way out of unpalatable treatments. Maybe you need to talk to your oncologist about how the delay is affecting your prognosis and think about moving straight into surgery, rads and hormone therapy with the hope that it will be enough. Marg.

kezmusc

Hi @Outra,
I am so sorry to hear that you are a so stuck.  This thing is hard enough without any added pressures and a little one.  If chemo can be done closer to you maybe you could rent the penguin cold caps? https://penguincoldcaps.com/. I am not sure if they work as well as the paxman machines and are more labour intensive. You would need to check with the nurses to see if they are prepared to change them over every 20mins or so or take someone with you to do that as the nursing team might not have time.  There is a distributor in Perth that are excellent and fast to deal with and will ship anywhere in the country.  Unfortunately they are pricey to rent as well but it might just be an option so you can get that treatment started asap. As @Afraser said, they do vary in results  depending on the individual and the team that's fitting them.  I am a big fan of the cold caps but not if that whats going to delay your treatment..  Did you have any family or friends  closer to Brisbane that you could stay with and can help with the baby as well. Have you spoken with the social worker at the hospital to see if they can come up with something?  Definately check with BCNA as well.  
Thinking of you XOXO

Outra

@AllyJay thank you for taking the time to reapond. There are numerous reasons that I haven’t progressed with treatment as yet to do with delays in seeing specialists initially, 2nd opinions, never ending waiting for appointments/tests/scans etc, plus the number of different treatment options I have been given. I only got results of sentinel biopsy last week (all clear) and one of my options is now chemo prior to surgery.
As I said “One of the reasons...” is to do with hair loss. I won’t go into detail here but my long hair means more to me than to almost everyone else as it aids me in coping with a different chronic illness. 
I wish you well but your experience is clearly very different to mine and your post is not helpful or supportive at my current time of need.
if anyone else has any clue on logistics assistance please let me know, thank you 

Outra

@Afraser thanks for your post. I’ve been speaking with cancer council but not bcna. Just an awkward time of year to get hold of anyone. X

@Zoffiel thanks for posting. Yes I’m aware that there’s a 50% chance that cold caps won’t work and know that it would be very difficult for me to handle if it didn’t go my way. The oncologist basically needs me to start in Jan or proceed with mastectomy instead and risk no chemo. Hair loss isn’t my only reason for not wanting chemo but I won’t go into details on here as I don’t want to sway anyone else’s decision on their treatment. X

@kezmusc thanks for your message. I’ve seen a few of your posts on cold caps and looks like you had an amazing result. I was talking to the Bris social worker a week ago but think she must be on leave for Xmas break so prob won’t hear back from her til new year. Just trying to gather info in the meantime x

Outra

Thanks everyone for your supportive messages, making a decision on all of this is just so hard and completely overwhelming xox

Romla

Not sure if this helps but in SA Cancer Council has accomodation close to the CBD at I presume reasonable cost whilst treatment is ongoing.Maybe Qld Cancer Council might be worth having a chat to.

Romla

Just checked they do and can be free under certain conditions - aiming at helping country people

primek

All good news that your sentinal node is clear as Her2 are very aggressive cancers. I am assuming your tumour must be large if they are suggesting chemo 1st.

My biggest fear was dying and leaving my children. My sister died of breast cancer. My sons, teenagers, were not ready for any life without a Mum. I chose the most radical surgery offered to reduce my local recurrence risk and accepted chemo without hesitation. I live 500km from my surgeon. I chose mastectomy in hope of not needing radiotherapy so wouldnt need to stay sway from home for additional time. If my sister had been diagnosed earlier her outcome may have been very different.

Most chemo unless dose dense is every 21 days. So I guess you could travel home in between. However with a baby this would be challenging and really you are going to need help. Perhaps a family member can accompany you?

Do you have a breast care nurse? They may be able to assist you with information.

https://www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx

I was devastated to lose my hair. In fact I can't think of a single woman I've met who found this process easy. It was harder than losing both breasts. It is though only a few months of your life in the big picture of it all. And that's the important part...your life. If you can't find a solution within a week or so you really shouldn't delay any longer. Her2 cancers are aggressive and can become metastatic in such a short time. My surgeon was relieved mine hadn't, as was I. 

My niece 14 years on (the daughter of my passed sister) is now 14 years cancer free of her her2 cancer. She was on the clinical trials of the same regime as me. She calls it liquid gold and is grateful to have been able to watch her babies become teenagers. Please don't delay having that opportunity. Kath x

[Deleted User]

@Outra I feel for you. My hair was very important to me and I insisted on cold caps which only worked for some of the time. It must be very difficult having a young baby and coping with the initial stress of making decisions about treatment. I hope you have some supportive friends and family around you. The counsellors at the Cancer Council are wonderful. 

It sounds like you’ve looked into options. Unfortunately with cancer treatment the options are all a bit difficult. My hair grew back, I had reconstructive surgery. There are options down the track. It really is important to start treatment soon. My aunty had delayed treatment due to a delayed diagnosis and I spent yesterday with my cousins and my uncle. It was our first Christmas without her. Please take care. xx

cranky_granny

@Outra All our decisions are hard and overwhelming regarding this shit disease. I can only say good luck with whatever choice you make. What works for you is what you do. There is a lot of support out there it is just hard to get your head around where to start. I do hope you have a good support team to help you out and use them. You don’t have to go it alone 

onemargie

Hi there @Outra everyone on here looks out for each other and you will always get honest advice which is great. I understand the logistical obstacles you have and it would be harder with a baby in tow as well.

1.did you say if you have a mastectomy you won’t need chemo? If this is the case since you are so concerned about your hair loss  perhaps this would be a better choice for you?

I had triple negative bc last year in my left boob  all scans clear no lymph nodes involved aged 43. Mine was stage 2a grade 3. Had the left boob off then Took the other boob off 6 months later my choice (on the royal Brisbane very long wait list for recon) but I also had a mastectomy so i only needed chemo and not rads as well and i would of had to have the rads at the royal which would be a pain in the arse tracking there from where I live. I had chemo at Redcliffe  and I wanted to do whatever it took to get the best outcome so no regrets for me. I had really long thick hair too but living far out weighed my hair loss to be homest and it’s grown back now. But I totally understand you feeling so attached to your hair it’s a big thing to lose it. 

 2. Or if you do have treatment Do you have any friends or family to help you with your baby ? If you’re feeling crook post treatment you will need that support especially if you are staying away from home you will need time to rest and recover 

these photos have t come up in order unfortunately but you will be able to figure it out the one with my daughter was after my first mastectomy then I cut I short prior to treatment then it fell out and I shaved it then there’s one with my scarve which looks ok then the one in the black and white dress is about a month ago. 
3. If you try the cold caps and they aren’t successful could you not consider a wig ?. There’s plenty available from wig stores you could consider one that would be close to your own hair?  Could that help you? Do you have a specialist you see for your chronic condition you speak of to help you too?

4.  Do you have any superannuation? If you do you can claim for travel expenses to brisbane as you would be travelling way over the threshold and I know there is accomodation available near the royal Brisbane if that’s where you are staying and I’m pretty sure it’s funded also you could check with qld cancer council or your breast care nurse or the social worker to arrange this. You can also claim your super but only if you have been on a Centrelink benefit for more than 26 weeks. I wasn’t able to claim anything as hubby worked and I lived inside the threshold. So I understand the financial implications  all too well 

I understand it’s diffiult but I wouldn’t be delaying any treatment or surgery if you can help it. The quicker you start the quicker you can get on with life again. Hope this helps and all the very best whichever decision you make. The whole thing with breast cancer is shit no doubt about that but it is doable. Biggest hug.  Margie xx

Brenda5

I am wondering if the doctors are thinking chemo first to shrink it and only do a lumpectomy surgery then? I wouldnt have  bar of a lumpectomy and just told my surgeon I wanted the whole breast gone and be done with it. I do not regret my decision. I avoided radiation but did have 3 months of the chemo as it had gone in to my sentinel node. Do you have any family up the coast? I had my treatment in Hervey Bay and the hospital, cancer care building, doctors and radiation centers are all in the one block which is very handy. The only drawback was no cold caps but in this summer heat who needs hair anyway?

Afraser

You need someone to help you fathom all this out and quickly. A McGrath breast nurse would be good if there is one in your area. Can your partner or any family assist? Otherwise you need to talk to your oncologist or hospital about getting some help. Queensland offers assistance for travel and accommodation for specialist medical attention but you need to apply and applying at your hospital may be quickest. You still need advice on possible support - chemo and a young baby are not ideal, and you won't know how you react to chemo till you start. I know this is really hard but as everyone says, your options become more limited over time.