Scared about the side effects of treatment

Caity

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

arpie

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 xx

Are 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-reconstruction

If 'no' you may like to join the Flat Chat group, here:
https://onlinenetwork.bcna.org.au/group/29-flat-chat-no-breast-reconstruction

Charlotte 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.html

Feel 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#latest

Take care & Wishing you all the best for your upcoming treatment xx

FeR

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

Thank you so much to both of you for taking the time to respond with such insightful and helpful answers. I really appreciate it and that’s given me some direction to start to look in to xx

Best of luck with the rest of your treatment FeR. Take care xx

Afraser

@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. 

Tri

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-tpbc
I 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. 

@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.🌸🌺🌷

FeR

I second the port idea @Tri @Caity it wasn’t  mentioned prior to my chemo and I have DIVA veins so cancelation has been tricky. 

Absolutely forgot to mention the dry eyes! Also hydralite - it replaced coffee for me as definitely needed the immodium/gastrostop.

i sort of withdrew from engaging during chemo with others on this journey but now chemo is hopefully over and done with I too will be jumping into the triple positive group here. 

Hugs to all xx

Tri

That’s wonderful @FeR my comment was meant to read “agree with all @FeR suggestions…” 😃😃😛but I managed to mangle it! 

I was a bit late coming to this network but it was so affirming, and helpful! Hearing about other HER2+ people’s experiences has helped me understand how being on the HER2+ or Triple Positive regime might be a bit different (with its longer timeframe and some of the HER2+ specific treatment issues and choices that come up at each stage) and that’s also been useful . 

Suki

Hi @Caity

Sorry to hear of your diagnosis and I can empathise - I felt the same shock/fear about being recommended chemo.  I was diagnosed with Triple Positive in Dec 2023 - I am older (48) and with two teenage kids.

I completed 6 rounds of TCHP chemo/target therapy, finishing in April this year.  I absolutely agree with all the suggestions from others above (Oral 7 mouthwash, eye drops, hydrolyte, gastrostop).  I didn’t cold cap, but wished I did (in hindsight) as my hair is slow to grow back!!

Try to stay physically active as much as you can during chemo.

There are a bunch of awesome people in the Triple Positive private group, so you might want to join.

Feel free to ask any questions.  All the best xx

Caity

Thank you so much @arpie, @FeR, @Tri, @Afraser and @Suki. This is all so helpful. I already feel much better about everything with your inside knowledge and advice. It means a lot that I have this support here, thank you for taking the time to respond