Hello everyone, I'm 35 with two young girls- I was initially diagnosed with LCIS just after a routine scan- but after my mastectomy surgery 2 weeks ago, the pathology has come back that I have HER2+ estrogen and progesterone + Lobular carcinoma, but thankfully no spread. It was a real shock as I was not expecting this news, thinking I would only have to have the mastectomy and that would be it. I am starting chemo, immunotherapy and hormone therapy in a few weeks. After what I thought was going to be a relatively straight forward recovery after my mastectomy and 6 weeks off work the oncologist said I am now looking at 6+ months off due to the upcoming treatment. I am feeling a bit overwhelmed and sacred about the effects of the upcoming treatment on my overall quality of life (and caring for 2 young children!). I will likely lose my hair with the chemo- the oncologist mentioned I could try the cold cap therapy- for those that have had it has it made a significant difference (the Dr said it takes a long time each chemo session to put on and off!)?I would also appreciate any insight into how to approach looking for some counselling support as well- would it be best to go through a GP or...?Thank you for reading, I'm so glad there is a support network like this available- I feel very alone so far. xx

So sorry to see you joining the club that no-one ever wants to join .... Hopefully we'll be able to help you along your way as you start your treatment & beyond xx. It is a massive shock when we get the diagnosis - and all the emotions that you felt & are feeling are all totally valid! Feel free to vent away here - we've all been thru that 'caught in the headlights' moment where we wonder if life will ever return to normal again .... Emotions can range from Sadness to anger, whilst grieving for the life we 'knew' and making the best of what is ahead of us - so if you find yourself a tad overwhelmed, please either ring our helpline for a private chat, here on 1800 500 258 (Mon-Fri, 9-5) or ask your GP to refer you to a local counsellor. Sometimes your cancer centre/Oncologist may also be able to refer you to someone, too ... We have a few members in Adelaide/Sth Australia ... they may be able to point you to someone specific.Not everyone has really bad side effects, even with chemo - so fingers crossed that you are one of the lucky ones xx I am sure others will jump on with tips for reducing the chance of side effects xxAre you planning on having reconstruction after your mastectomy? If 'yes', you may like to join the Reconstruction group here:https://onlinenetwork.bcna.org.au/group/1-choosing-breast-reconstructionIf 'no' you may like to join the Flat Chat group, here:https://onlinenetwork.bcna.org.au/group/29-flat-chat-no-breast-reconstructionCharlotte Tottman (A specialist BC Counsellor who was diagnosed with BC 5+ years ago - and had a double mastectomy.) Her podcasts on her own 'journey' are very easy to listen to & I think you'll relate to a lot of the issues that she went thru herself. She is very easy to listen to. http://www.drcharlottetottman.com.au/my-podcast.htmlFeel free to check this post out with lots of info on the forum - we have some 'off topic' threads on our gardens, art & craft & even 'funny stuff' to give us a laugh! .... As well as some 'tick sheets' down the bottom, to self assess your mental and physical health .... https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-new-online-network-members#latestTake care & Wishing you all the best for your upcoming treatment xx

Hi Caity,So sorry to hear about your diagnosis.i was diagnosed in July this year with triple positive invasive ductal carcinoma - also in one lymph. I finished my 6 rounds of chemo and targeted therapies (tchp regime) on 15 November and have surgery on 17/12. Then more targeted therapy and hormone blockers - it feels like long journey. For me chemo was tough but doable. Key things I found helpful were to force myself to walk twice a day and do some form of yoga. If you don’t have a yoga practice something like the mediations/breathwork from insight timer can be helpful and some gentle stretching will help. Walking can be around your lounge room if that’s all you have the energy for or get outside and breathe in the fresh air. Just to help you sit with yourself and breathe. It was hard sometimes but in the end made me feel better. Be sure to tell your team about any side effects as there is often things they can do to help. I had my dose of one of the drugs lowered each time to minimise the effects. They want you to get through without smashing you more than you need. I’d get Imodium and movicol since you never know which way you’ll go and some mouth spray like oral 7 to help avoid mouth problems.also cut your nails short, apply nail hardner and keep them clean. Use unscented moisturiser like QV is helpful if you get dry skin. Keep a dairy of your symptoms both so you can compare rounds and know what worked to help you and to share with your team.If you are in WA BreadtCancerCareWA have free counselling services,support and classes (like yoga for breast cancer) I think the cancer council do Australia wide counselling plus as Arpie mentions the BCNA line. I was fortunate to have a pain psych already who was happy to keep me on for counselling. I also saw a cancer coach once for some advice on holistic ways to manage some unpleasant but not urgent side effects like mild fluid retention. Most importantly you’ve got this. My mantra was I choose to be here now - and chemo does end.wishing you all the best xx

@Caity I didn’t have the option of cold cap, but if you would prefer to try and keep your hair, it’s definitely worth asking about. I believe it can extend your treatment time, each time, but many have found it beneficial. Your GP can refer you to a counsellor but it was my senior oncology nurse who put me on to an excellent person, experienced with cancer patients but not assuming that everything was cancer related. My issues were about the time I spent at work (I enjoyed my work a lot), my inability to prioritise time for myself and my need to have the concept of building energy (as opposed to expending it) explained. Cancer can expose quite a few cracks! The short time I spent with my counsellor was worth a great deal. Your medical team will look after your body but your mind and feelings get affected too. Looking after them as soon as possible is a significant part of not only recovery but planning a future.Best wishes.

Hello @Caity sending you big virtual hugs as it sounds like you’ve been on a real roller coaster. So much wisdom shared already. They’ve pointed you to some discussion groups already and if you’re interested there’s also a group set up for Triple Positive people in the network that you may want to join https://onlinenetwork.bcna.org.au/group/31-triple-positive-breast-cancer-tpbcI too was diagnosed with triple positive breast cancer and my cancer type is Invasive Lobular Carcinoma. I have completed my treatment- including surgery, radiation and the intravenous chemo and immunotherapy in April this year and am now on the tablet (‘hormone therapy’) for at least 5 years. I am feeling so much stronger again. You’re very wise to be thinking about health support. I believe you can ask your GP about a mental health care plan if you would like better priced psych services. You can inquire about local services like oncology exercise rehabilitation - it was a real help for me - and the rehabilitation and exercise. I found the chemo phase pretty rigorous but I think everyone responds differently, I would agree with the good suggestions made by @@FeR To these I would add getting yourself some gastrostop, deep heat (if you get aches) and some HydraForte eyedrops as chemo can be quite dehydrating. I also found the MooGoo brand of moisturisers and shampoos very good for sensitive skin. It’s also worth asking for a “port” which is like a temporary entry point for IV drip connections. This helps protect your veins. I am really sorry to know you’re going through this but so glad you found your way to this network, feel free to engage and ask lots of questions. Sending you virtual hugs.🌸🌺🌷

Dear Caity,I'm sorry for your diagnosis.I haven't had exactly the same as you.I had Stage 2 Grade 3 Er +veMastectomy, Chemo and RTMy Chemo was EC x4, Paclitaxol x12. I did not have a hard time with Chemo or RT. All side effects were manageable.I did use my Income Protection, within my Superannuation.I recommend applying for this soon, if you have it. There is usually wait time. I also used the Cold Cap, with good results. I thinned slightly on top, where the cap didn't fit well sometimes.If you are interested I can send photos.It does add time to being in the Chemo suite.It goes on 1/2 hr prior to chemo going in, and stays on for 3/4hr ( or 1hr, I can't remember)For me, it was now 4 yrs ago.If you use the Cap, it goes on and drops approx 5 degrees, every 5 min. Over 1/2hr.So it is gradual bursts of cold.Ask more if you need.

Scared about the side effects of treatment

26 Replies

arpie
Member
3 months ago
So sorry to hear of your diagnosis, @faith888. xx Feel free to copy your post & put it into an individual post so that people can respond to your individual story xx

I hope you are going ok - and all the best for your Rads starting Mon. I found it to be the 'easiest' of all the treatments & hope you do too. Just remember to lather up with lots of lotions after each treatment xx. Have they mentioned using Mepitel (or similar) to reduce the chance of skin damage?

Take care & all the best
Tri
Member
3 months ago
You are two amazing mums @Caity and @faith888
sending you both lots of positive energy for your treatments 🌸🌻
Caity
Member
3 months ago
Hi @faith888, thank you for your kind msg and for sharing your story. I’m so sorry you’ve had to go through all of this- especially so soon after giving birth!! That’s so full on- but yes I feel that motherhood has instilled a strength in me I didn’t know I was capable of- you are right we are strong mumma’s! Best of luck for starting your radiotherapy on Monday- my mum had radiotherapy for her breast cancer treatment many years ago and has pulled up well from it all so I hope the same for you <3 big hugs to you also!! Xx
faith888
Member
3 months ago
You are a strong woman! Your story almost the same with mine, I’m 36yo, I was diagnosed last Nov 2024 after 4 months of giving birth. I had my lumpectomy last December and I’m going to start my radio therapy on Monday and will be taking the oral medication. I also have 2 lovely daughters. We are strong mummas we will get through this! big hugs
Caity
Member
4 months ago
Thanks so much @Tri :) hopefully onwards and upwards in a steady manner from here. I've really appreciated the support of this group and being able to read about other people's experiences. Take care xx
Tri
Member
4 months ago
Oh my @Caity what an experience- sounds like you’ve done an amazing job under pressure!
I didn’t have an allergic reaction but had heard it could happen and in my case the nurses explained the first dose I was given would be administered slowly over a longer period of time to see how we fared.
Thanks so much for generously sharing an update - sending you lots of energy and congratulations on one more step forward 🌸❤️
Caity
Member
4 months ago
Yes they did say there was a chance of an allergic reaction- but still didn’t think it would happen so dramatically haha. But yes, onwards to the new plan now! Thanks so much @Abbydog x
Abbydog
Member
4 months ago
Did any of the medical people warn you of the possibility of an allergic reaction? I didn’t say anything because it didn’t happen to me and it isn’t common. I was warned though. Well you have a new plan now. All the best again.
Caity
Member
4 months ago
Thanks so much everyone for your support and advice <3
I felt much better going into it on Wednesday thanks to this place of support.
I actually ended up having a severe allergic reaction to the paclitaxel though and went into respiratory distress! They had to press the alarm button and I had lots of medical people rushing into the treatment area. A bit of a crazy experience! Anyway, the nurses took good care of me and after some antihistamines and Ventolin I settled down. Not what I had expected though!! Anyway, a silver lining is that the oncologist thinks due to my tumor being on the smaller side when it was removed I will just continue on with the Herceptin and tamoxifen instead as she doesn't think continuing on with the chemo is worth the risk of the allergic reaction again.
So now I'll be starting the tamoxifen next week and will see how that goes.
Thanks again for all of your help and support xx
Abbydog
Member
4 months ago
I hope today went well for you.