Heartbroken, but unbroken
Comments
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@strongtogether - as with some of our members, I went private for surgery & public for rads. I had a pretty big 'gap' in the private surgery (about $6000 including gaps in scans, meds over the last 18 monhts etc) whereas public rads was totally free. I even stayed at the hospital for the month at the Lodge provided for patients & their families at Minimal cost (1.5hr drive each day, each way otherwise!) So definitely ask about going public for the surgery as well. Most surgeons work in both systems, at the same hospital! My Health Provider NIB took care of the 'hospital costs' but not the surgical costs. Ask THEM how much you are covered for, with the surgeon's fee. They cover the bed and theatre costs - just not always all of the surgeon & anaesthetist!
All the best with your decision making xxx0 -
hi @strongtogether
Sorry I have not replied before now but been away on a break....
I am part of admin on a Facebook group for TNBC https://www.facebook.com/groups/1166665270079659/
ONLY Ladies can join it .... your wife might like that
I am nearly 7yrs out from diagnosis with double mastectomy and chemo and rads
Others have given you lots to think about and ask...
Feel free to ask any questions.
Soldiercrab
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Thank you all for your comments and replies.
We have had some good news recently, with the PET-CT scan coming back clear. She had axillary surgery to remove the lymph nodes on that side, and once she is recovered we will start chemo.
We feel a lot better, and we can see some parts of an overall plan starting to come together.
I am going to be coordinating the help of our support group of family and friends. Trying to keep them involved without putting too much on any one of them, especially at the start when everyone wants to jump in to help.
They are good people. We are lucky to be in a good place with good friends.
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That's great news @strongtogether and you seems super organised. You will find a list on one of these threads ( hopefully someone will jump in here with a link) on what is really handy to have on hand for those going through chemo. Do you know what sort of chemo regime yet. I was on TC regime.
Everyone is different in their own reaction to chemo. depends on type and dosage. Some work part time through it were as others like myself couldn't at all. I think some one wrote on here once that chemo just makes you feel grotty which is really apt. Doable but grotty. But definitely check the list out as it gets closer to time.
All the best. xo
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Hi @strongtogether. To save you being overwhelmed with multiple lasagnes, you might like to check out some apps such as the following. Could be handy! K xox
https://gathermycrew.org.au/
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Yep, it's important to work out what you need and then ask for the appropriate help. With a young family it may be that you want to have a couple of people on standby for childcare (if there's school or kindy involved, make sure they know and that you have the appropriate friends/family added as emergency pickup people).
I had some lovely friends who brought over a few meals but the biggest things were providing somewhere for my kids to go after school when treatment ran late, and a friend who drove miles across town to pick up my daughter and take her to a school sports competition during the day while I was having treatment.3 -
Hi strongtogether, sorry to see you here, but welcome. You have come to the right place for support and understanding of exactly what you are feeling and going through.
Im also TNBC, was diagnosed in October last year, at diagnosis it’s such a shock, disbelief, a very distressing time, sounds like your wife has a great support team so that’s absolutely fantastic.
I found doing a mindfulness and meditation course helped me through the early stages of diagnosis, even now I use it if things get on top of me.
Try and stay as active as possible, especially through treatment, do things that you love to do to keep your mind occupied.
Having a good night sleep was a great help in dealing with your emotional state, so seek help if sleeping becomes an issue.
I would recommend to stay away from Dr Google, any information google Cancer Council foundation or BCNA websites .
I am currently still having treatment, just finished chemotherapy, Having surgery next month then Radiotherapy.
Stay positive, there are a few of us on this forum with TBNC , some of us are still in treatment, some here have been 7 years plus cancer free. I myself have found it fantastic to talk to other people that have had the same diagnosis.
I’m happy to pm you privately an stay in contact to help you and your wife, any questions, or just need to vent or just need to tell someone how you’re feeling I’m here.
As for finances I went full public, what I have heard though is that yes definitely go public when you have Radiotherapy definitely for no out of pocket expenses.
Get a good Breast Care Nurse as another support person, if you feel happy to look for a support group in your area.
Sending gentle hugs to you, stay positive, We can do this !6 -
Hello @strongtogether I too had a TNBC diagnosis and two out of three sentinel nodes had cancer in them. One was 5mm and the other 7mm. It was a terrible shock! I am much older than your wife but underwent a lumpectomy then an axillary clearance. At the end of August it will be 12 months since I finished active treatment which was 4 doses of AC and 12 doses of Taxol. I then had 30 doses of radiation. It is doable and you just take a day at a time. I feel so well and healthy now with minimal side effects and am constantly amazed at how my body recovered so quickly from the treatment. Wishing your wife strength and my very best wishes throughout her treatment.5
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Hello everyone.
Thank you for your continuing kindness. We are now preparing for our first appointment with the medical oncologist. I am starting to get together a list of questions.
Its funny - in my line of work I often have to use scant resources to find out a lot of nformation about things Iknow nothing about. One of my primary tools is the internet - dr google - as well as access to experts. I like going to the experts having gained what knowledge I could from other sources. In this case I have - guided by many of you as well as the experts - consciously avoided doing this.
As a result, I am a bit worried about my questions being stupid.
If there is no detectable Cancer currently in her body, how is the success or otherwise of Chemotherapy measured?
When does the chemotherapy begin?
What is the name of the type of chemotherapy she will be receiving?
What is the expected frequency of this, and will this change over the course of the treatment?
What are the expected side effects of her chemotherapy regime, and how can they best be managed?
How can she best prepare for the side effects of chemotherapy over the next few weeks?
Are the effects of chemotherapy cumulative, ie will it get worse with each session?
What do we need to know about other sorts of therapy such as immunotherapy?
What clinical trials are available to her, and how do we decide whether we want to be involved?
Should we stop eating some things like meat/caffeine?
What sort of exercise regime should she be on? We are concerned that her fitness has suffered already after almost three weeks with minimal activity. How should this be managed?
What is the likely impact to her immune levels of chemotherapy, and how do we manage that bearing in mind we have two young kids at school?
Those are a lot of questions.0 -
How did they know chemo was working for me? My tumour went from 2.2cms to 1.7cms in 3 months; and then to 0.6cm in 6 months. That’s how they knew it was working for me.1
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I think all your questions are reasonable and I think the oncologist will probably give you the answer to most of those questions before you even ask.1
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Oncologists expect a lot of questions, particularly at the firs time appointment. Most of the questions you have are usually covered in their "mini presentation" to you explaining what they recommend.
Can answer the biggest one for you though, if cancer is no longer there how is success measured? In short - they can't. We early BC patients do chemo as a risk prevention strategy. To remove any micro cells that aren't visible on imaging but may be there.
The diet question - will depend on how holistic the oncolgy department is. Your breast nurse is probably best place to start with that.
Exercise - the evidence indicates as much as physically tolerable, ideally something everyday, both during and after treatment. Improves side effects of chemo, mental health and long term risk reduction. Ive not exercised maybe 6 days out last 3.5 months of chemo, doing at a minimum 3km walk with my dog, some days can run 7km no problem, others forget about it.
There's a really good book which might help the diet/exercise/immunity stuff from a "beginner" perspective called the complete guide to breast cancer by Dr Liz O'Riordan, check your local library2 -
There are indeed, and we have all asked them, often all at once too!
The hardest part is accepting that there may not be clear answers and that one person’s experience may vary widely from another’s.
if you think of not having cancer, but having one kind of a very large number of types of cancer it may help. Breast cancer comes in many forms and stages, treatments vary and so reactions.
Detectable cancer may be treated by surgery, chemotherapy or radiation but there is also the issue of cancer cells in the body, not yet detectable but potentially damaging. Chemo essentially hunts out fast growing cells that may cause problems further down the line and, we hope, kills them. It’s not a subtle process and it has implications but to date it’s still an effective tool in the armoury .
The type of chemotherapy will depend on the precise nature of the cancer and possibly on the preference of the oncologist, based on knowledge and experience. You will know much more once you start as it is very hard to predict reactions beforehand. Nausea and fatigue are common, varying in degree and I didn’t have either at all.
From my own experience over 6 years ago, one of the lasting lessons from cancer is not to anticipate too much. There are so many unknowns that you can spend a lot of time planning for or worrying about something that never happens. Taking things step by step is hard, when so much is uncertain but it does actually help.
Cancer treatment is do-able but it can use up energy, for family as well as the person directly affected. So focus your energy as wisely and lovingly as possible, seek and accept help wherever you can and look forward, not back. Very best wishes.3 -
All good questions, none remotely stupid. As the others have said, the oncologist will answer them all and more you haven't thought of as well. Take notes, or ask if you can record the appointment on your phone. You get a lot of information at that first appointment and you'll think of a lot more questions as a result.
Very quickly it will become second nature, so try not to stress in anticipation. It's a steep learning curve but you'll both do it. Have you and your wife accessed BCNA'S My Journey online tool? That will be a tremendous help for you both if you're hungry for information.
But to answer a couple of your questions, yes, the effects of chemo are cumulative, but not all of them. Generally speaking you'll be more fatigued at the end than at the start.
Exercise is very important and the most effective thing you can do to reduce the side effects. I walked almost every single day during chemo, starting with a short slow stagger up and down the street, and building up to a brisk 5kms by the end of each cycle (except the last, low bp problems and my heart beat too fast. Common on TC).
Your immune system is very low only for a few days in each cycle, the onc will tell you which. Be extra vigilant then with germs, but otherwise general caution should be sufficient. Keep friends and family with germs away, but you can't do that with your own kids, so you just do your best. I had four in school when I had chemo and I didn't get sick once.
I began seeing a dietician when I commenced chemo. She was thoroughly acquainted with cancer treatment. Broadly speaking they don't want you to gain or lose too much weight. She said 5kgs in either direction was OK. The big thing was to keep your nutrition up, and in the face of changed or lost appetite, to increase your protein intake a bit. But all the usual rules apply: lots of veg, two serves of fruit a day, lean protein, complex carbohydrates etc. Food can be a challenge because chemo can make you crave weird stuff and/or totally knock out your tastebuds. By the end of mine I could taste virtually nothing. However six weeks later it was back to normal. So, see how she goes and get your GP or oncologist to refer you to a dietician if you feel you need extra support in that area.
Like @Afraser I want to say that while a reasonable amount of anticipatory research is handy, the breadth of reactions to the same drugs is so wide, that it's better to take things as they come. Some work all the way through, others can barely get off the couch and most of us fall somewhere in between. It's grotty but it's doable. Easy to type and harder to do, but in my experience, cancer is very good at teaching us to focus on the present.
Take care, and hugs to you both. K xox3 -
As others have said, your questions are valid but many will probably be covered by your onc as part of the consultation.
Other things to ask (or at least note):
Is a portacath suggested? Not fun to have but saves your veins (search for a discussion from January 2018 - "to port or not to port" for the feedback I got from the forum when I was uncertain)
Is cold-capping offered - your wife may not want it (it adds a huge amount of time to each treatment) but worth discussing if it's available
And one for later when chemo starts - what do we do if she needs better side effects meds at an awkward time (I speak from experience, here)
Your oncology clinic may offer ancillary services such as physio, exercise groups, dietitician, psychology - or they may have local recommendations. It's worth finding out about them. I accessed a bc rehab oncology exercise class through a large part of my chemo and it was fully covered by my health fund as it was run by the hospital.
Chemo is not a brilliant experience. I would certainly not put it up there with "must do". But for most of us it's not as bad as we expected, although your resilience does wear down towards the end. Unfortunately, the only answer we get as to whether it's working is survival and even that may not be down to the chemo.
Best wishes.4
