All Alone

Hi aryhaven,
Yes when they say full body scan, OMG did my brain go into overdrive.... this is a normal process after speaking to so many others. Great news  all clear.
Happy to see you wrote what cancer it was.. exactly that.WAS........
Next step is to just have treatment to mop up anything that can’t be seen ( really piece of mind). But it’s what we do to kick this to the curb for good.
 I’m happy to see they are giving you a three week break in between AC, that will give your body a better chance of recovery and you will feel so much better before next dose.
My treatment from day of diagnosis, two lots of surgery, chemotherapy and radiotherapy was exactly one year. 

Hi ayrhaven, as others have mentioned above, yes I too was told that my tumour was bigger than first thought before surgery, nothing is correct until pathology reports come back.
Please don’t worry as this seems to be the norm...... It was a shock to me to.......

You will have some healing time from surgery, during this you will have an appointment with an Oncologist to talk and arrange your Chemotherapy treatment. 

Not sure how Covid affects taking someone in with you but ask your doctor if you can record the appointments so that you don't forget anything.  As for chemo, I would make sure that you have someone to drive you home even if they are unable to be in the room with you during it.  It always left me so tired that I wouldn't have trusted myself behind the wheel afterwards.

@ayrhaven, good to hear your plans are progressing. I would definitely take a person to next appt with onco, if you are allowed to, as there will be a lot of information to take on and questions to ask. Good to write down your questions and worries so you don’t forget them.

My journey is going to be a long one.
I have spoken to onco and he has put a few things in place.  Before I start treatment he wanted a full body scan, that scared the daylights out of me.  I was worried they would find it elsewhere.  That result can be according to the surgeon all ok.. What a relief.  Then I need to have a port put in, that has already been done.  I see the onco on Monday to discuss the treatment plan and the type of cancer it was.  The suggested treatment is 2 chemo's, 3 weeks apart for 4 cycles, then single chemo for 12 weeks, then more surgery, then radiotherapy.  I will also have a further injection for 12 months(not sure what it is yet) and I will have medication for 10 years.  I am pretty anxious about it all but I just have to go with the flow.  The onco scares me because he might tell me something I don't want to hear.  I just need to remind myself this is just another hurdle I need to jump over.  Is it advisable to have someone take you to your treatment and how long can it take.
I look forward to some tips.
Ayrhaven

As @zoffiel says - all too common.  I started with a lumpectomy and maybe rads, then ended up with a second surgery for mastectomy followed by chemo and radiation.  It does take the wind out of you but it is doable.  Ask about a port - it's well worth it in the end.  I went private for oncology as it was covered by health insurance but public for radiation (and that was as good as any private clinic could provide).  Radiation is not covered by health insurance and it can cost thousands.  I can't remember everything I got in preparation for chemo but you will find lists on previous posts here (beginning of 2018 for sure as that was when people helped me).  It's good to have the stuff on hand particularly if you're not in easy reach of supermarkets/pharmacies.

I found this in an earlier discussion - info I had passed on to someone else back in 2018 based on what I had used:

"Before I started, many members shared there must-haves list with me so I could stock up in advance as we don't live near any shops or 24/7 pharmacies.  You can probably find the post - would have been February I think...  But here is what I have found useful so far to have on hand:
Sorbolene (for dry skin in many areas)
Dove soap
Very soft little kids toothbrush
Biotene mouthwash
Baby shampoo and afro comb to take care of your hair if you're keeping it - I started with cold caps
Coloxyl with Senna
Movicol 
Pocket sized sanitiser lotion
Large antibacterial wipes for public loos
Pocket sized wipes for whenever
Mylanta double strength for indigestion
Truckload of Panadol for headaches
Flushable bottom wipes for when things get tender.
I haven't used all things all of the time but everything except the Movicol has had more than one go and most have been regularly reached for."

I would also suggest that you make sure you have a decent thermometer on hand at home.

If you're not going to try cold caps for chemo, don't rush out and buy a wig as they are expensive and you may find you hardly wear it..  There's lots of stuff online for interesting ways of tying scarves and with winter coming up (and isolation, of course) you can hide under hats if you want to.  If you do feel the need to wig it, find out if there are any wig libraries you can access.

If you haven't done so already, you may find it useful to collect and collate your medical notes and reports.  They pretty quickly assume a life of their own and start multiplying.  I got myself a zip-up folder from Officeworks (and very quickly updated to a lever arch version) plus some plastic sleeves and dividers.  I kept everything in there including appointment cards and prescriptions so everything was together and it was portable.

As for timeframe - it will depend on the chemo and whatever is going on with isolation.  I had AC-T and that took 6 months.  4 x AC every 3 weeks then 12 x Taxol every week.  A couple of weeks rest after that followed by 3 weeks of radiation (15 doses).  Pretty standard treatment.  How you tolerate it is an individual thing and you won't know until you start but please don't go on what you see in the movies as a guide.  Medications are pretty good at handling side effects as long as you let your onc know what is going on.  I suffered in silence for the first few days as it was a weekend and I knew no better.  Once the onc knew how bad I was feeling, he prescribed better meds that got me through it.  Given that, some people sail through the experience (well, perhaps not sail, but they cope well).  Keep a running record somewhere handy - times, symptoms, medication, temperature...  It helps you keep track of things, provides a guide for next treatment, and helps to report back to your onc what has been happening. 

Also, think of practical things you may need help with.  It's not helpful if you get given a freezer full of meals you don't want when really, what you need is a lift to and from the hospital, or someone to feed the animals for the first few days after treatment.  That way, if people say they want to help, you have something immediate to suggest.  My lifelines were the friends who picked up my kids from school without concern or who stepped in to drive one across town to a sports carnival while I was having treatment.

You will probably find you have more questions as things become clearer.  The most important thing for you to remember is that this can be done - it's not fun but you will get through it.  And take care of yourself.

Bugger. Bigger lumps than expected are, unfortunately, all too common. Particularly if you have lobular BC. The actual pathology will determine what sort of treatment you will have. The sequencing changes according to all manner of circumstances. Do you know if you need more surgery?

Chemotherapy usually comes first, but then sometimes it doesn't. You really wont know until you speak to your oncologist.

On the topic of oncologists, it is important to ask what options you have there. It is possible you have access to a public service--do find out if that is the case as we are sometimes not fully informed about all available services. Surgeons tend to follow their own referral pathways, and that can be very expensive if they send you to a private practitioner when there is a public option.

Chemo itself wont cost you anything, the appointments with specialists do.

Trying to prep for these things is both stressful and, frequently, pointless. It sounds like your main concerns are going to be your husband and your farm. Concentrate on putting a few different  plans together to make sure you have some support there. You won't know how treatment will affect you until you start. It is quite possible you will cruise through this, or at least have an easier time than you expect. Chemo is not like it was even 10 years ago and many people have few, and manageable, side effects.

I would recommend getting a port installed if it is possible or appropriate for you.  They are not fail proof, but can greatly improve your chemo experience. 

Get yourself a good big folder, keep copies of absolutely everything in it and take it to every appointment. Get copies of all your test results, collect business cards, write down peoples names, when you saw them and what you spoke to them about. Keep records of any side effects and what was done about them. I know this sounds like a lot of work, but it surprising how often results and reports don't get forwarded to the right people so it pays to take control of that yourself. You think everything is going to be seared into your brain and you will remember it all, but this is going to be a long haul, so keep good records.

If you haven't already connected with a breast care nurse, chase that up straight away. they can be a godsend.

Above all, take time for yourself. That might mean scheduling a daily walk where you don't think about anything except putting one foot in front of the other for a few kms. Good luck. Mxxx

@ayrhaven, I’m with you, we are with you. You CAN survive this, you WILL survive this.

If your pathway is typical, you will probably have chemo first. My chemo was 4 cycles of epirubicin and cyclophosphamide, fortnightly, and 12 cycles of paclitaxel, weekly, then radiotherapy 5 days a week for 5 weeks. But it all depends on your personal results. So my lot after surgery took 20 weeks chemo and 5 weeks radio. Usually there is a short break in between the two.

In the meantime, there are lots of important things to do. First get prepped, there is a lot on this site about what to do. This will help give you something to focus on while you wait to start the next phase.

Hi All,
Got my results today and wow, what a kick in the guts.  The lump was bigger than what showed on the mammogram, it was an aggressive lump.  I now face chemo and radiotherapy, not sure which is first need to see oncologist.  Can anybody give me some tips on how they coped with there treatment.  I am trying to keep a positive attitude by thinking I can survive this, I need to survive.  How long can chemo/radiotherapy take and what do I need to do in the meantime.
Ayrhaven

Here is a picture of the kelpie dog coat I did for pink ribbon day.  Needs some work still, we also had a small stall to raise money for BC.  With my new machine on the way hopefully I can do more. My way of helping