Forum Discussion

Member

6 months ago

New here...my story so far

Hello,

I’m new the group and haven’t shared my story yet. It’s taken me a little while to be able to read some of your stories and not have ‘freak out’ moments. Thank you to all of you for sharing your stories. It is important to see the full gamut of what is happening and what is to come. In my initial moments I was overwhelmed reading here because I was so scared every time I read and got caught up in thinking if it would happen to me too. So I selfishly took myself away from reading and gave myself time.

I was diagnosed with EBC (early breast cancer) in August after a Breastscreen appointment that picked it up. I have a fibroademona that was detected and checked when I was in my 20-30s so I fully expected that would come up in scans. In fact, I had noted a lump in my breast and had managed to convince myself that it was just the fibroadenoma that had grown.

It’s amazing how we can easily convince ourselves isn’t it? Not quite delusion, not quite outright denial but I did have a few things going on at the time. I lost my job of over 20 years, Covid shut down the world and just when I was finding balance and working again I fell down some stairs and broke my leg. So for two years, I let other things take priority over having my Breastscreen checkup. I’m one of those cautionary tales and I’ve had to give myself grace and not blame myself too much over it and think on the ‘what ifs’. If I keep on the ‘what if’ I will just go crazy and overwhelmed emotionally and I have to get on with it. Decisions have to be made and now knowing what I know, I can’t wait any longer.

Here is where I tell you all that this isn’t my first time with cancer. In 2010 I had surgery and radiation for a liposarcoma in my arm. I was finally cleared and cancer free by 2018/9. So I’ve had a few years of not thinking about it except when I see my scars. To say that I am scared is a huge understatement but I’m a planner and practical person mostly so I cope by finding solutions. I don’t know what the stats are on survival rates for my situation, it’s one of the questions I haven’t asked yet. Partly because I’ve gone into solution mode and partly because I am just that bit too scared I guess.

My EBC journey so far has been all about finding a surgeon which I was lucky enough to be able to do from my specialist physiotherapist. I’d been seeing that physiotherapist for my arm and knew she also worked with many women with breast cancer. She referred me to my cancer surgeon. The decision to have surgery was an easy one after the sarcoma I knew it was necessary. Having the choice of breast saving surgery and reconstruction is a blessing. I chose to have my other breast symmetrised at the same time. To my thinking, if I was going for surgery I preferred to do it all at the same time.

My surgery was 8 October so I am now 2 weeks post surgery this week and healing amazingly well. I’m grateful that my body heals so well. I am also grateful that I was able to read up on tips on the BCNA site. I chose to go private so that I could choose my surgeons, both of whom are excellent in their fields and have been wonderful.

So what are my numbers? My EBC lump was 37mm Grade 3 invasive carcinoma, ER and PR 75% 3+ positive, HER2 negative with clear surgery margins. However, 2 of 3 lymph nodes showed metastasis with largest tumor deposit 22mm. That is the current concern and so I’m due to have a PET body scan this week and consultation with a radiologist and oncologist.

My surgeon tells me that she wanted more information before deciding my radiation protocol and further treatment. I know I will also have hormone suppression treatment but am not there yet. I am thankful that the research on breast cancers is so extensive that treatment protocols are updated often. My surgeon tells me that previous protocol for lymph node involvement would have meant instant removal of all lymph nodes. Whilst I am grateful I may not lose all of my lymph nodes and that I may have options, a part of me is also really sad and scared knowing that the reason there is so much improvement in treatment is because there are so many women that have had to go through this before me.

That’s me, my story so far. I was brief though wordy. I will continue to read and share where I can, you may have noticed that I struggle with sleeping 😊 Sad to be here, grateful to have your support.

Cath62
Member
6 months ago
Hi @sunrise_sunset, thanks for sharing your story. You have had a long road so good you found us all here. We are all here to help and support each other. There are no questions you cannot ask here and there is no judgement either. We all get it. It does take awhile to process it all.

Have you taken to a counsellor or psychologist. Many of us do that too. I am not saying you have to, each to their own. I did see a psychologist a few times and it was helpful i had very similar pathology to you, although no lymph involvement.

I hope yyou have good support around you with family and friends. It can get lonely as others don't really understand and that's why this group is excellent.

I think there are a few things that help get through all this, like walking or yoga or other exercise if you can. Getting out in nature is very grounding too. Do what you love to do, be kind to yourself. Ask for help if you need it and take deep breaths every now and then. Best wishes to you.
sunrise_sunset
Member
6 months ago
Hello @Cath62
Thank you for the warm welcome and response. It does indeed take time to process and I appreciate the support. You are right it can be lonely. I do have support but sometimes it is easier with people that have been or are going through it and not just well meaning family and friends.
I appreciate you checking, I have seen a psychologist and have found that useful previously so will continue to use that when I feel I need it.
I am looking into what will help me get through. I do enjoy being out in nature so I'll need to figure out ways to get out and about again.
Cath62
Member
6 months ago
You're welcome @sunrise_sunset. Great name you have too. It's all one day at a time, some are good and those that aren't ..well just sit with that. It does get a bit better and sometimes I don't think of MBC at all. I guess it's like a shadow that sits there until something grabs your attention. Stay in touch and deep breaths.
sunrise_sunset
Member
6 months ago
Thank you @Cath62, deep breaths indeed. I got good and bad news today. I'm still processing and will share with the group soon.
sunrise_sunset
Member
5 months ago

sunrise_sunset said:

Thank you @Cath62, deep breaths indeed. I got good and bad news today. I'm still processing and will share with the group soon.

Hello again everyone,
I thought I would post an update to my journey so far. Last I posted, I mentioned I had both good and bad news. Well, the good news was that the PET body scan came back negative for showing any active cancer activity - well large enough to be detected, it doesn't rule out any cancer cells travelling along in my body. As I understand it.

The bad news was that my medical oncologist recommended chemotherapy. Up until my meeting with him, chemo had not been on the radar. He also used the term 'aggressive cancer' for the first time. This is where I started to get really scared. He also mentioned I had the choice of doing an EndoPredict test - you can read about that in this discussion thread https://onlinenetwork.bcna.org.au/discussion/26977/considering-endopredict-before-accepting-chemo#latest.

So, I have chosen not to have the EndoPredict test as I wrote about in that other thread. I start chemotherapy on 15 November and as I understand it I will have 4 cycles of Doxorubicin, Cyclophosphamide and Pegfilgrastim then 12 cycles of Paclitaxel. I am not sure how this will affect me, what side effects I will have but I am hoping for the best. I have also chosen to use the 'cold cap' method to hopefully reduce the chance of losing my hair - here's hoping!!

I am now almost 5 weeks post surgery. I find the most discomfort in the taping up of the scars. As I understand it, it helps to flatten out the scarring. I'm feeling stronger and with more energy so I am starting to do small things around the house and other gentle activities.

A small set back, I developed an infection in my cancer breast and have had to go on more antibiotics. Thankfully my physiotherapist picked up on this and told me to alert my reconstructive surgeon. I can't tell you all how much I love my physiotherapist. That lovely lady has been with me through my first cancer and is the reason I have a functioning arm. She is the one who referred me to my breast cancer surgeon, so my trust in her is without question. I may not have an assigned breast cancer nurse but I do have her.

On the question of breast cancer nurses, I know others get assigned one and I am not sure why I do not have one. It could be because I am a private patient, I don't know. I'm asking around about that one.

Thank you for following along. I'll post another update after I start chemo.
arpie
Member
5 months ago
That's a shame you got an infection, @sunrise_sunset - I hope the ABs kick in & hit it on the head.

With your previous cancer history and now being told your BC is aggressive - yep - biting the bullet & going with the chemo would be the smart thing to do I reckon xx.

I am sure the ladies who've had your 'regime' will jump on & give you tips xx

Fantastic that your physiotherapist has been so pivotal in referring you both times (and picking up your infection!) and helped you so much thru your first cancer too. xx She sounds like a keeper! ;)

Re Breast Care Nurses .... sometimes private patients do 'miss out' on being referred - tho my surgeon (I went private too) had a resident nurse (who wasn't an actual BC Nurse) ... she answered a couple of early questions (about getting onto the surgeon's list & pricing) but didn't really 'backup' much with post op help! At the time, the 'local' BC Nurse position was vacant where I live (regional NSW) so there was no backup there either. BCNA became my saviour for SO much info & support, as everyone here has 'been there, done that', so KNOW what you're going thru! ;)

Whereabouts do you live (roughly - you can add the town/city to your Profile & members may be able to direct you to known services in your area. ....). You can also jump onto the McGrath Foundation site & go to your area & see who is available ..... contact them & you should be able to hook up with one xx
https://www.mcgrathfoundation.com.au/get-support/find-a-nurse/

I hope you have lots of support during your chemo treatment ... maybe consider cooking up some of your favourite meals & freezing them in smallish portions, so if you can't be bothered cooking during your treatment .... you can just pull one out & bingo! ;)

take care & all the best xx
Afraser
Member
5 months ago
Hi @sunrise_sunset

I never had a breast care nurse but never felt any lack - the senior oncology nurse at day oncology was brilliant, as was my surgeon’s nurse. The main thing is to get the support you need when and if you need it.

I got a serious infection 12 months in (caused by a persistent seroma) but my surgeon acted quickly and correctly, further surgery ended the seroma and the infection fast!!

Good luck with your chemo treatment - reactions vary a lot and are hard to predict, but sometimes it’s much easier than one fears. Best wishes.
Tri
Member
5 months ago
Thanks for sharing your experience @sunrise_sunset and sending you lots of positive energy for recovery from the infection.
Your team sounds very thorough, even though a chemotherapy journey ahead might not be the one we wished for, there’s a lot of focus on making it as manageable as possible for us. It can feel all consuming so it’s great you have proactively put together your allied and associated health folks and the tips about preparing shared above are very wise.
Everyone experiences chemo differently and there are some who have few side effects. In my case, I hadn’t expected to be impacted by loss of energy and weakness. A real game changer was enrolling a few months in to start a physio oncology rehabilitation program (like you I went private and this was covered and offered at the private hospital). The other program participants were really terrific fun, despite being very diverse we were all bonded by wanting to be stronger again and taking steps that we could (with the support of the physios) to be as active as possible. Something to consider - your physio may know about programs in your area.
All the best 🌸🌻 it’s not a cakewalk but it’s do-able!
Katie46
Member
5 months ago
Hi @sunrise_sunset, I was in your shoes this time last year, IDC stage 2 grade 3 and 1 lymph node involved. My oncologist strongly recommend chemo because of the high grade, the same treatment you have been recommended. It's a lot to take in, but I found the treatment manageable, and I'm 5 months post chemo now and feeling almost like my old self. Side effects vary from person to person, there is a chat 'struggling through chemo' which might give you an idea of what to expect.

This group has been wonderful for support and just for asking questions, and knowing there are people out there going through the same thing.

All the best with your treatment journey. Katie
sunrise_sunset
Member
5 months ago
Thank you @arpie, @Afraser, @Tri and @Katie46 for your sharing, wonderful words of support and suggestions.

@arpie - I will check out the BC nurse info and see if others have any tips on the chemo regime. My physio is indeed a keeper which is why I've stuck with her for 14 years :smiley: And this is where I confess that I live very close to my mother who's been busy cooking meals for me since I had surgery...So I have meals covered and am very grateful :blush: :heart:

@Afraser - thank you for letting me know I am not alone in not having a breast care nurse and you're right, I shouldn't feel a lack as I am well supported by others in my medical team and here in BCNA. I appreciate you sharing about your infection experience. I see my reconstructive surgeon this week and am hoping it doesn't mean surgery but at the same time if it is needed to clear up infection so be it.

@Tri - I hope my experience is not too bad, good to know others have found a way through. I'm actually looking into a program run via St Vincent's Hospital here in Melbourne that sounds similar to the physio oncology rehabilitation program you mention. Here's hoping I can join it.

@Katie46 - "I was in your shoes last year". This both made me teary and heartwarmed at once. None of us want anyone else to be here, do we? And yet it is so lovely to read those words of support and encouragement and not feel alone ::smile: I feel some optimism that I will also find it manageable.