Forum Discussion
Paris_24
2 years agoMember
Newbie - not the 2024 I was hoping for!
I was diagnosed just before Christmas 2023 with invasive lobular cancer - a journey that just keeps unfolding. Initial diagnosis scans showed the ILC was 3.3 cm, then MRI 6 cm and the pathology results ended up at 7 cm and another 1 cm LCIS spot in a totally different area. I had two surgeries- a mastectomy and a positive sentinel node, followed with an axilla clearance. I have some cording post surgery which physio is working on. Next week, I start chemo (AC and then Pacilitaxel) followed by radiation and then endocrine treatment. Not what I was hoping for the year I turn the big 5-0. I really appreciate reading otherβs experiences, and the Q&As available here.
22 Replies
- KimRMemberMy heart goes out to you, my diagnoses was 9 years ago, I have had 9 health happy years, after I recovered from treatment. Treatments are getting better all the time. Keep going one foot in front of the other. My diagnoses made me reassess my life, we (my husband & I) made a lot of changes, we become sailors best thing we ever have done. Cancer has raised her ugly head again, so I retired myself (farmer) now it is time for more sailing, or whatever your thing is. Good Luck
- Paris_24MemberThanks ladies for sharing your experiences. @Coastiejas so glad you celebrated in style and sounds like a high finishing chemo and radiation. Morning tea for the teams sound like a goer, love the choc boobies idea. @Katie46 - I am sure I will cry too I already am and trying to understand why π - Coastiejas said it so well only those who have been on the journey can truly appreciate this point. Celebratory dinner sounds good too. Appreciate the tip that it will take some time for the side effects to go and so exciting that your hair, eyebrows and lashes are back. It helps manage expectations that I will be back to my old self, but a new self in time. I get a small break 2 or 3 weeks post chemo, likely another drain popped in for my seroma and then 3 weeks radiation before talking about hormone treatment. Sending you healing and strength every day, the path forward keeps being laid. πͺ
- Katie46MemberHi @Paris_24 not long to go! Congratulations! I cried at my last chemo, I don't generally, so be prepared for it. I also rang the bell π and everyone cheered. A few weeks later we went out with a group of friends to celebrate.
It takes a bit of time for the side effects to subside, so be patient, although I did spend a lot of time inspecting at my head and eyebrows waiting for hair to appear π
Over 2 months later and I have hair again, eyelashes and eyebrows, my nails are almost back to normal, my rashes are gone and my peripheral neuropathy is slowly improving. - CoastiejasMemberHi @Paris_24
Well done on making it this far π Only 2 left, it will be great to finish the chemo! It really is an achievement, only those of us who have been through it can truly appreciate that fully! One of my chemo nurses did warn me that some people get a bit teary after the last chemo, apparently it's quite common, thankfully I was ok! I rang a victory bell after completing my chemo π After I finished radiation I also rang the victory Bell and I sang for the team and waiting room (I'm on my way - The Proclaimers) and we had a good laugh, sing and dance and they wore party hats when they got me out of the machine for the last time π₯³ I also took morning tea in for both my chemo and radiation team on my last day as well ( including a pack of chocolate boobs AKA ARNOTTS royals- they really look like chocolate boobs π). But really you should celebrate however you want to, you've earned it! Let us know how you go with your celebrations! - Paris_24MemberThought it was time for an update. I am very close to the end of this 5 month chemo journey. Survived the AC rounds and have completed 10 with only 2 more weeks to go of the Paclitaxol. I also slipped in an extra week in hospital with cellulitis in the chest wall yet continued with chemo. π The cumulative effects of the Taxol, chemo face and arm rash, steady as she goes peripheral neuropathy in fingers and feet, no eyebrows, fatigue and the yucky post nasal drip will soon start to disappear. I know I am far from the first but have been riding a roller coaster of emotions as this phase is going to end - I am excited and happy but also feel sad and want to cry, am thankful for my treating team, the staff on the chemo day ward, and all those family and friends who have really stepped up for me. While there is more treatment to come and a persistent seroma to deal with too, I am keen to hear what things helped for those who finished their chemo to celebrate or acknowledge this momentous occasion? π
- CoastiejasMemberHi @Paris_24
Great you are feeling better! I found when my appetite returned each round that I was really hungry and everything tasted like it was the best ever of whatever I was eating! Great idea to have a staycation and keep up the treats!
I've been put back a week for this round of chemo unfortunately, but it is what it is and will give me some time to catch up on stuff while I'm feeling better.
@iserbrown thanks for the tip about The Otis Foundation....I didn't know about it and will definitely look into it further! - iserbrownMember
- Paris_24Member@Coastiejas half way through week two of the 3 week cycle it was like the fog lifted in my brain and I have started to feel like my old self, including appetite returning. So much so I booked a staycation for the weekend near the beach to give me another view to sit around and look at from inside and hopefully some morning or twilight walks. I am so up with the treats suggestion, fresh blackberries, and my favourite plain Jatz. Hope you are going well.
- CoastiejasMemberHi @Paris_24
I was also wondering how you were getting on. Sounds like pretty much what I had. It does get a bit easier as you navigate through it. I had good and bad days.... you just have to accept the bad ones and know that they will pass and you will feel a bit better. I had some insomnia too and found meditation helpful after a suggestion from my McGrath nurse (I'm not usually all new age!!) Look good feel better have some online sessions. Staying vigilant with the mouth wash has been working for me for any mouth issues. Agree with @Abbydog re the nausea, your team may need to tweak your meds a bit. I hope that things are starting to get a bit easier for you and don't forget to keep up the treat regime. - AbbydogMemberWell you are on the way. You will settle into a routine. And know what suits you along the way. Report the nausea to your treating team. They may increase or change your anti nausea medication. You will have a rhythm of ups and downs. I'm sure you will be fine. It is about acceptance of the new you, but it all takes time.
I was in a most unusual position of knowing a large number of women with BC, before I got it. So none of it was a surprise to me. This is not common. I'm a nurse and worked with a very large number of women.