As at 2 July 19 I have been through chemotherapy, surgery and radiation. Below are what I found helped me.
So you have found a lump or something suspicious and you get it checked.
For me, I found my lump whilst having a shower one morning. I found it just before we were leaving for a 6 week overseas holiday and got it checked straight away once I got back.
I was given a referral by my GP to the Sydney Breast Clinic. I had been there on a number of occasions and knew that it was a one stop shop which meant I didn't have to traipse around town to multiple places.
I got scanned (mammogram and ultrasound), biopsied and given a result on the same day. But it was expensive.
After I was told that I had breast cancer, the Dr at the clinic told me not to Google. Do yourself a favour, try not to. Until you have a clear diagnosis, you have no idea what you are looking at or for.
But of course we do.
I had my next appointment a few days later where they gave me the full results. These were some of the hardest days. Thoughts go round and round, you panic, you think you are going to die. You go numb.
Once I received my full diagnosis, the Dr recommended a surgeon who also happened to work at the clinic. I spoke with my GP and she also recommended the same surgeon. I was comfortable then with going with her.
My surgeon then recommended my Oncologist and I went with this recommendation.
If you find you are not happy with any member of your medical team, do not hesitate to look for a new one; this is a tough ride and you need all the support you can get.
I am not sure how you go about finding the right specialists/doctors if you go private?
I had surgery, chemotherapy and radiation. Then there were the pathology tests, Dr visits, medication. As at 3 Jul 19 I have spent $14,700 and with Medicare and my private insurance, I am $7000 out of pocket. And this is with me doing radiation through the public system.
Gosh this was probably the hardest part of my treatments. I had to have the strongest one out there; FEC-D (refer to my treatment link here). But in saying that I think I went through it quite easily.
Chemotherapy uses drugs known as cytotoxics to kill cancer cells or disrupt their growth.
There are many different types of chemotherapy; your doctor or oncology nurse will be able to explain the possible benefits and side effects of the drugs prescribed for you.
Chemotherapy works by targeting fast-growing cells. Unfortunately, while these include cancer cells, there are also fast-growing cells in other areas of the body such as the hair, nails, bone marrow and digestive system, which is why side effects such as low blood counts and hair loss may occur. Not everyone has significant side effects, and most side effects stop when the treatment stops. You should talk to your medical oncologist or oncology nurse if you are concerned about any side effects that you experience.
Chemotherapy drugs are most commonly given intravenously – injected or dripped into a vein through a cannula (thin plastic tube) inserted into your arm or hand. Because you may be having chemotherapy regularly over a period of time, there are options that can make this easier. These are either a portacath or PICC line.
The advantages of having a port or PICC line are that it can spare your veins from the frequent ‘needle sticks’ associated with chemotherapy and blood tests. It can also spare your veins and blood vessels from the irritating effects of intravenous medications, which over time can make your veins sore and scarred, so they can no longer be used.
A central venous access device, also known as a port-a-cath, infusaport or simply a port is one option. It provides access via a very slender, flexible tube that feeds directly into one of the major veins near the heart. A port is implanted under the skin in the chest wall or, less commonly, the arm, and it can stay in place for as long as you need it. The procedure to insert a port can be done in the radiology department under local anaesthetic or in surgery under general anaesthetic.
The advantages of a port, are that, because it is under the skin, it is less susceptible to infection and does not require dressings. As it is not visible, other than a minor swelling under the skin, it is also less intrusive than a PICC line. You are able to go swimming with a port in place. The disadvantages might be that it means another hospital procedure and another scar. Also, even if you are not having treatment a port will need to be flushed with an anti-clotting agent at least once every six weeks.
An alternative to a port is a peripherally inserted central catheter (PICC) line, which can also be called a PICC. A PICC is inserted into a vein in the arm near the elbow and travels into a larger vein near the heart. PICC lines are generally inserted under local anaesthetic in the radiology or outpatients department. The procedure usually takes about 30 minutes, and you will then need a chest X-ray to check that it is in the right position. A PICC can be used in hospital settings or at home and can stay in place for weeks or months if needed.
The advantage of having a PICC is that it may be easier for your medical team to arrange for you to have this close to the time that you need to start your chemotherapy. PICC lines can be put in place in the radiology department at the same time that you have your chemotherapy.
Disadvantages of having a PICC include that it is held in place by a dressing that needs to be changed at least once per week. There is also a risk of infection associated with the external component of the catheter that enters the skin. The line will need to be flushed at least once per week to keep it from being blocked – the oncology nurse will do this for you. You may also be able to have a nurse visit you at home to do this if your treating centre offers this service. If you like to swim, a PICC line might not be the best option for you because of the increased risk of infection.
- Where can it be inserted?
- How do they work?
- Which option is better for my lifestyle?
- Will I be able to see it?
- How do I care for it?
- Will I need a general or local anaesthetic?
- How often will it need to be flushed, and who will do that for me?
- Can it be used for scan contrast injections?
- How often will it need to be replaced?
- Can blood be taken from it for tests?
- How will I know if it gets infected?
Note: Medical staff do need to be trained in how to use these. I had to give blood before every session of chemotherapy and this was done via a vein.
- Unless you are cold capping it, you will more than likely lose your hair, all of it (think brazilian!). If you have long hair, I suggest you take charge and get it cut short beforehand. Hubbie had to shave mine off and found it emotionally hard and hard on his shavers.
- If you do lose your hair, you can choose to wear a wig, scarves or just go bald. I wore scarves and hated them. I have no skills whatsoever in this area and struggled getting them to look good.. Plus coordinating them with my clothes! You can buy wigs or some hospitals have wig libraries. Check them out.
- You will get a cold head. In the early stages I thought that I was getting sick as I was waking up shivering. Worked out that I was cold and had to start wearing a thin cap to bed.