Finished treatment, now what?

TeePee

Hi All

I haven’t been in here for awhile, I think I just battered down the hatches to get myself through treatment. Diagnosed with Grade 3 Triple Neg in Aug 2018. Single mastectomy with lymph clearance in early Sept, followed by 4x AC and 10/12 paclitaxel weekly (finished Feb) then 25 rads which finished 3 weeks ago.  As I’m Triple Negative I don’t have any hormones to take.

I’m kind of lost as what to do from here. I feel like there should be some exercise programs I should do - I have awful joint pain, especially in my ankles. I also wonder if there are any vitamins/minerals supplements I should take to get me feeling good again and help with my recovery, but no one has advised anything. I feel like my treatment has been quite disjointed, like I haven’t really had anyone overseeing my care plan.

Any advice or recommendations what I should do from here in terms of dos/donts, exercise, diet or vitamins etc?  Any advice greatly appreciated!

Thanks

Tania

Deanne

Hi @TeePee,
Firstly, congratulations on finishing treatment! It can take quite some time to feel better after everything our poor bodies go through with treatment so be gentle with yourself.

I personally found walking for gradually longer times helpful to get moving again but the best thing is to find something you enjoy. 

A good GP can help you find services appropriate for you. They can organise a personal health plan where you get 5 subsidised (Medicare) visits to health professionals such as a dietician, exercise physiologist etc.

I found an exercise physiologist to be very helpful because I simply wasn’t ready to go out and just go to the gym or a normal exercise class. They can help you recover with a much more individualised program.

I hope that you find some of this helpful as you try to get back to feeling good again. Just take it one step at a time and don’t put too much pressure on yourself. Take care. xxx

Sister

Congratulations @teepee on getting through!

Can you access a rehab oncology exercise programme as movement and strengthening does help?  I'm not sure what is around in Perth - maybe some locals can help.  Possibly Encore (YWCA) which is a pool-based programme for bc.  If you have private cover, you may be covered for some programmes.  Otherwise, you can access a number of physio programmes with a health care plan from your GP.  I believe there's some mentioned on this site from the home page - also check out Pinc & Steel as they link with physios who work with oncology issues.  Once you know what is best for you, then you should be able to work out what you can do on an ongoing basis.  I'm no expert but I think the trick is to build up gradually, with help from someone who understands the possible issues, and go from there.  Of course, walking is great exercise that probably won't get you into strife.  You do need to be careful not to go too gung-ho with arm weights as you don't want to trigger lymphoedema - that's why it's good to have someone knowledgeable to guide you in the beginning.  And you may be a bit weak after months of treatment.

Other things may be dragon-boating or things like that but I would suggest that you make sure you work on regaining some strength if you have lost it during treatment.

As for diet, I don't think much changes from what you probably know from before bc - as healthy as you can - watch the alcohol intake...and the sugar...and the convenience food.  Easier said than done when life gets busy again and you're tired.

Re: supplements...there is a site that I can't remember that gives a lot of information about this (@romla).  You probably should check with your medical team as to what you might need (Vitamin D, calcium, etc...) but, unless you're actually lacking in most things, taking supplements won't do much (and some "natural" things can have nasty side effects).  Personally, I've even stopped taking a calcium supplement, with my onc's okay, due to the possible heart risks - I'm trying to keep the bone density up with extra calcium in my diet and weight bearing exercise.

I don't know what your home situation is but I think the most valuable thing to know is that you must be insistent with your family (and yourself) that you need to factor in non-negotiable time to do things for yourself.  It can be hard because for many of us, our time is the first to be lost in the busyness of life.  I did do Encore at the end of last year.  I have my weights by the telly so that they're on hand for that moment of an evening where I have the slightest spark of energy.  I have also, after much searching and planning (a bit of a logistical nightmare), designated at least one night per week where I go to the pool for an aqua session.  For a change, everyone has to plan around me for that one.  When the weather was better, I was driving down to the beach (an hour away) every 2 or 3 weeks to go paddleboarding early in the morning.  I've learnt to work out options, then say this is what I'm going to do...does anyone have any questions.  Then I do my best to stick to my guns.  It also helps that, because I've got everyone on board, there's a certain expectation for myself that I'll follow through.

I've also found that some mindfulness meditation is helpful when you get overwhelmed.  There's a lot of different apps out there to help.  I use Insight Timer and have a number of different meditations bookmarked on my phone.

I hope that some of this helps.

TeePee

Thanks ladies. I’ve made an appt to see my GP and I’m going to ask for a full blood work up to see if I’m lacking in anything, but I thought it might be good to ask those in the know!

I’m really keen to find an exercise program to get me going again, so I’ll look into Encore. Unfortunately I’m a single Mum with not much family support so organising time to myself is tricky, though I’m planning on going back to work in a few weeks for 2 days to start with.

Romla

Hi TeePee

Here is the website on vitamins , herbs etc that @ sister mentioned.
Its used a lot by GPs and there is an app you can put on your phone too.

www.mskcc.org/cancer-care/patient-education/herbal-remedies-and-treatment

It details how a complementary therapy works , what it’s  benefits/side effects are and also what medicines they conflict with.Well worth a look but always check with medical staff in case of conflicts with your meds/ treatment.

kmakm

The herbs website is

https://www.mskcc.org/cancer-care/diagnosis-treatment/symptom-management/integrative-medicine/herbs/search

It's excellent and was first recommended to me by my oncologist.

It's a weird time eh, after active treatment. A lot of people struggle mentally, myself included.

I heartily agree with @Sister about finding an exercise physiology programme to do. You can ask your GP, oncologist, breast care nurse or your local public hospital.

It can be a good time to join a support group, and maybe see a counsellor if you're feeling a bit down or lost. It takes a while to process what's happened. You've been in fight mode. Now it's wound licking time!

It can be a good stage in which to start a hobby, or renew an old one. There's also lots of fundraising activities out there, and not just for breast cancer. It feels good to give back.

Don't rush yourself, listen to your mind and body, and be kind to you. K xox

Romla

Encore is a free 8 week hydrotherapy course for breast cancer patients run across Australia except not Victoria.Each session involves a one hour seminar on topics of interest like lymphodema , Otis foundation (free holidays) , clothing and undergarments post mastectomy. Then you spend one hour doing hydrotherapy.ie 2 hours per week for 8 weeks.It also provides an opportunity to meet other breast cancer people and make new friends.

Another free program is a half day seminar called Look Good Feel Good which is for any type of cancer patient and discusses wigs and makeup with a wonderful bag of top quality cosmetics to take home.

Also you might like to investigate local breast cancer groups to provide support in your transition back to every day life.It helped me a lot to seeing local women I’d met at a local group carrying on normal daily activities in my community.

Re supplements I was recommended to take Krill Oil tablets by my oncologist for joint pain/ stiffness and like @Deanne I found a daily walk of one hour very helpful to my physical and emotional state.I also participated in a local gentle exercise class run in my community twice per week for an hour.

Romla

I’d also like to say this blog has been invaluable in my return to everyday life as no one understands better than someone who has been through this journey.I highly commend staying on it , contributing when you can and getting support or an ear when you need it.Also people tend to be online 24/7 when friends , family and medical staff are not.You will get to know some wonderful people also.

Romla

I think there is special group for triple negative people. Can you help @SoldierCrab ?

Romla

It is daunting when you finish active treatment and are more or less left to your own devices and expected to rejoin life again. I found at a low spot the Cancer Council Cancer Connect service useful.It put me in phone contact with a lady who had had breast cancer years before and back enjoying her life. Hearing her tinkling voice meant much to me as did our chats.

Recently @Deanne posted a wonderful thread about her life 6 years post her diagnosis - the search bar at the top of the homepage enable you to locate past posts which may be of interest too.

SoldierCrab

hi Teepee
yes there is a facebook group you might find helpful 
https://www.facebook.com/groups/1166665270079659/

TeePee

Thanks @SoldierCrab, I’ve just sent my request to join!