Showing posts with label breast cancer. Show all posts
Showing posts with label breast cancer. Show all posts

Wednesday 9 February 2022

Breast Cancer - my stay in hospital

This post follows my initial post about Sewing a gown for breast cancer surgery
and my previous post talking about my surgery

Please note that this is my personal medical story. There are details of medical procedures. I am not a medical doctor. 

All dressed and ready to go home from hospital. I didn't expect to be standing up or walking around six days after surgery!


The Hospital Experience

After six days in hospital, following the mastectomy and breast reconstruction, I was allowed to come home! Being in hospital was overall a very good experience and the nurses were absolutely brilliant (so grateful to Bronwyn, Dorothy, Sandra, Rhiannon, Sarah and Madi). However, I think the lack of fresh air, normal food and uninterrupted sleep actually made me sick! My appetite declined over the six days in hospital and I had a constant headache for the last three days. It was heaven to get home and sit in the garden eating fresh fruit. I immediately began to feel better, regained my appetite (by Day two I was starving) and now, Day 4 at home, I'm feeling pretty good.

Hospital food: mmmmm....frozen peas and corn!



I mentioned in the last post that there was lots of checking in hospital. It was every 30 minutes the first 24 hours, then hourly, two hourly and four hourly for the subsequent days and nights. I had my own room, which was great, but as the nurse visited less frequently I found myself getting a bit lonely. Outside visitors were restricted to two per day for two hours morning and evening due to Covid. On my second day in hospital, the nurse came in with some masks for me to wear. She said that the state had moved to 'Amber' level (Western Australia was having around 20 cases of community transmission per day for the first time) and all patients had to wear a mask. The staff had to also wear protective glasses or a visor. This was not good news. Luckily, she came back a bit later and said that I didn't have to wear the mask as I had my own room, but patients in shared rooms would be required to wear them, even to sleep!

This is my son pretending to be dead in my hospital bed! He has my calf massagers on, which pump air alternately along the lower legs to reduce the chance of blood clots (I wore these day and night with my compression stockings). I also had to have daily heparin injections for this reason (ouch). The bed had to be inclined to 45 degrees so my tummy wouldn't be stretched while it healed. For the first four days I had a heated blanket over my left side to help healing. In addition I have to wear a compression bra, which I was already wearing when I woke up from the anaesthetic, and an abdominal binder. The bra is a tight (so tight!) crop top style with hooks and eyes all down the front and on the shoulder straps. Sexy! The binder is a very wide, thick elasticated strip, about 30 cm wide, which wraps around the whole lower torso with velcro to get it on and off. It is hot and rides up. I have started wearing it over a tank top to reduce skin irritation. The bra and binder are to be worn for three months!!!



After three days I was able to go to the bathroom (the blue door on the right) by myself and the catheter was removed. I could also shower on a chair with my wounds covered with sticky plastic sheets and my surgical drains in a bag! The second time I was due for a shower, my partner had just arrived for a visit so was roped in to help me out. With my movement limited, he volunteered to help remove my various compression garments and find a dry spot for my pillowcase full of drains. 'This should be sexy' he smirked as he peeled off my surgical stockings!

The view from my hospital window



When I came out of surgery I had three surgical drains. One in the reconstructed breast and two in the abdominal region. According to one of my nurses, some people have up to eight drains after this same procedure, particularly if they are larger ladies or less healthy overall. I thought the drains would emerge from the edge of the wounds, but they were inserted at a different point below the scars and pushed upwards to the surgical sites. Once the fluid from the drains becomes clearer (less blood) and the volume is below 20-30ml/day then they can be removed. I had two removed on Day 4 and the last one came out on Day 6 after surgery. It was good to have them all out before coming home so I didn't have to have a nurse visiting me. It didn't hurt when they came out. The nurse just cut the thread holding them in, I was told to breathe in and the tube was pulled out as I exhaled. The tummy ones were about 40cm in and the sensation was very strange when they were pulled out!

There were two main wound sites, the breast and the tummy, and then small holes where the drain tubes went in. The only scarring to the breast is around the nipple. The old breast (which had 410g tissue removed) must have been taken out through the hole and the new one (formed from 469g of tummy fat) squeezed in. I'm quite amazed at how neatly this was done. The reconstructed breast is usually made a bit larger so it can be adjusted later if necessary. I have all my old breast skin except for the nipple. The plastic surgeon told me just as I went into theatre that he thought the result would be aesthetically better if the nipple was removed and the breast surgeon said it was also better in terms of ensuring the cancer was removed. Of course I agreed. There is surgical tape around the nipple area, but no other dressings. The nipple itself, which is now a circle of tummy skin, had two blue stitches in it to indicate where the newly joined blood vessels were so the nurse could easily find where to check the blood flow with the doppler. The abdominal wound, which goes from hipbone to hipbone, is covered with surgical tape and dressings. I was most surprised to discover that I had a new belly button. The whole region of skin above the old one had been cut and pulled downwards to join the lower abdominal cut (just above the bikini line), meaning that the old belly button had disappeared into the scar. It looks like the new one has been made by cutting a hole and stitching around the original indent. Fascinating!

There was some swelling to the surgical sites, but not much pain at all. I initially had a 'pain button' to self-administer Fentanyl, but it made me nauseous (a common side effect of opioid drugs) and I vomited on the day after surgery after taking it, so stopped using it. Tramadol, another opioid taken orally, also made me feel sick, so I stuck with Panadol and a slow-acting pain killer. I also had antibiotics and an anti-inflammatory. Now, on Day 9, the swelling is much reduced, there is little to no bruising and only minor discomfort. I am not taking any pain medication, but I'm being very careful to rest and not lift anything over 2kg. I'm doing arm exercises as instructed. I feel energetic and ready for action, but it's a different story when I actually get up! I'm walking well, but slowly, and can climb the stairs no problem. The hardest thing is getting up from bed, but even that isn't that difficult.

While I was in hospital the plastic surgery team, loads of them, came round every day at 7am to check my progress. I was in the plastic surgery ward, rather than the breast ward due to the type of reconstruction I had had, which was a little bit like a skin graft. I only saw a breast doctor once or twice and it was not the same one I'd seen at my appointments. I asked the breast doctor about the surgery, how many lymph nodes had they taken etc., but she said she didn't know. That was odd and disappointing.


Early days in hospital with heated blanket over me and drains on the floor


On Day five after surgery I was told that I had to leave my room and move into a shared room. My bed, chest of drawers and everything was just wheeled from one room to the next, so that was easy. I was put into a room with four beds. I was pleased to note that none of the patients in there were wearing masks. They told me that most of the nurses didn't worry about enforcing the new mask rule. That was a relief. I was already feeling unhealthy. I was also told by a nurse that if the 'Amber' status changed to 'Red' then it would be enforced and no visitors would be allowed at all. I'm so relieved I had surgery before that happened.

The other occupants of the room were all extremely interesting and I had no time left to feel bored or lonely. Briefly, one had been flown down from the very top of the state to have surgery for a small cut on her finger so that it didn't develop nerve problems and pain. She was supposed to have gone into theatre on Thursday afternoon, but by 4pm Friday she was still waiting as there had been an influx of emergencies, one of which was a shark attack. I felt so sorry for her fasting all that time apart from one meal late Thursday night. The second person was a homeless aboriginal lady whose little finger had been badly bitten by her boyfriend and had become infected. She was told on Thursday morning that her finger would need to be amputated and she had done a runner from hospital. She was not back by Friday afternoon (during which the outside temperature was 43C) so her belongings were packed up and the bed given to someone else. The third occupant was a very energetic lady who had shattered her lower leg in a motorbike accident. The accident was caused by someone doing an illegal U-turn, but she had been over the legal alcohol limit, which complicated everything hugely. She had been in hospital 23 days and faced several more surgeries and the chance that her leg would need amputating. She was brave and funny and interesting and I really hope she's going to be ok.

In the lead up to going to hospital, as the number of exposure sites was rising, I got really worried that I might become infected with Covid, or be required to isolate for 14 days if I inadvertently visited an exposure site, and my surgery would have to be postponed. After three months of anxious waiting for that surgery date, I was not about to let that happen. I laid very low in the last couple of weeks, only going out for essential reasons and for exercise. My entire focus was the surgery and being as well prepared as possible. Part of that preparation was exercise. My preferred exercise is walking, so I did a lot of that. With the days being extremely hot, I got up at 5.30 or 6am and went out then. It is lovely out at that time. I walked pretty fast, averaging about 10 minutes per km and would do 4km. I would walk again later in the day if I could. I ate healthily too, reduced my sugar intake and stopped drinking alcohol, not that I drank much before. When I went in for surgery I felt really strong and healthy. I still feel the same nine days after surgery, just a bit slower. I absolutely believe that the exercise was the reason I have bounced back so well and that the drains came out quickly. 




What next

This has been a long and disjointed post and I hope you're still with me!, I'll just briefly say that I will receive my pathology report in a couple of weeks, which will be when I find out whether I need chemo. However, my discharge notes contained a summary of the surgery (above) and I was pleased to see that only two lymph nodes appear to have been taken, the sentinel node and the enlarged node containing the radioactive seed. Since these would have been checked for cancer during surgery, I'm hopeful that none was found and that is why no further nodes were removed. This means there is a chance that I won't need chemo, but I'm trying not to get my hopes up too much about that.


Thursday 6 January 2022

Breast Cancer - Full Diagnosis

This post follows my initial post about Sewing a gown for breast cancer surgery
and my previous post about my initial diagnosis

Please note that this is my personal medical story. There are details of medical procedures. I am not a medical doctor. 


Appointments and tests

Finally the day of the appointment with the breast surgeon arrived. I was nervous. but pleased that something might finally start happening. I was called in first to see a doctor and the breast nurse. They explained my diagnosis so far (which I already knew) and took some information from me. Then I met the breast surgeon. She said I would be needing surgery, but that it would be necessary to have some tests and scans first to determine exactly what they would be dealing with and what kind of surgery would be needed. This was frustrating as I felt that I could have been having these tests over the last month while I was waiting for the appointment. Anyway, as it turned out I was booked in the next day for a contrast mammogram and the following week for a CT and bone scan.

After I saw the surgeon, the breast nurse spent a long time with me making sure I understood everything and that all my questions were answered. This was very helpful. She also gave me the direct phone number for the nurses' station at the clinic and said to call any time. I have since called a few times with burning questions and the nurses could not have been more caring and helpful.

The first test I needed was the Contrast-enhanced Spectral Mammography (CESM or CSM), which involved the injection of a contrast dye, which shows up the cancer in a mammogram. A cannula is inserted for the dye injection (Top tip: drink plenty of water before you have the cannula needle. I didn't and it took six attempts!). The dye is then injected by a machine into the cannula. There is an immediate and weird sensation of having wet your pants (which doesn't happen). You then have the mammogram, which is like a normal mammogram where each breast is squeezed between two thick perspex plates, once vertically and once horizontally, and images are taken. 

This photo is my squished left breast (I didn't think that is a sentence I would ever write on my blog). The white areas clumped together in the top half is the cancer. 

 

The next week I had a cannula inserted again. I didn't have any problem with the cannula this time as I'd drunk loads of water beforehand, even though I was fasting (fluids were allowed). This time I was having a CT scan and bone scan. To start with, I went to Nuclear Medicine where I was injected with a radioactive substance for the bone scan. This takes three hours to seep into the bones, so while I was waiting I went to Radiology for the CT scan. I had more of the dye that makes you feel like you've wet yourself and then it was onto a platform which is moved in and out of a hole in a massive machine. It was cold, but luckily they had given me a blanket. I had to lie completely still. I thought happy thoughts about my dog and it wasn't too bad at all.

I was then allowed to have some food and a coffee before going back for the bone scan, The process was similar to the CT scan - in and out of a big machine and it was time to go home. 


Diagnosis

A week or so after the scans I saw the breast surgeon again. This time I was given the full diagnosis (a month and a half after the initial cancer diagnosis). I was told that I had Stage 2, Grade 2 invasive lobular breast cancer that was oestrogen and progesterone positive and HER2-. The lymph nodes did not seem to be affected but one was enlarged so I was referred for a PET scan to check it out. There was no evidence of cancer elsewhere in my body.

That's a lot to take in. Broken down this means:

Stage 2 - a cancer diagnosis has four possible stages. Early breast cancer is Stage 1 or 2. Determining the stage is very complicated and is explained more here.
Grade 2 - this determines how quickly the cancer cells are growing with 1 being slow growing and 3 being fast growing. Mine was intermediate.
Invasive - meaning that the cancer has spread within the breast
Lobular - breast cancer occurs most commonly in the milk ducts (ductal) or the milk glands/lobes (lobular). Only about 10% of breast cancers are invasive lobular.
Oestrogen and progesterone positive - my cancer uses these hormones to grow and blocking these hormones is an important treatment option.
HER2 negative - HER2 is a cell surface protein controlling cell division. HER2- usually means less aggressive cancer than HER2+.
Lymph nodes - lymph fluid from the breast drains into lymph nodes under the arm, so if the cancer spreads, this is the most likely place it will reach first. I have an enlarged lymph node that needs further investigating.


Treatment Plan

I was told that the treatment plan was mastectomy of the left breast with chemotherapy likely after surgery. Lumpectomy was not an option as the cancer had already invaded the breast. The prospect of chemo was quite a shock as I had assumed the mastectomy would be enough. Apparently lobular breast cancer is a bit insidious and can send cells off into the body, requiring chemo to sort them out.

The surgeon said that I could have a breast reconstruction at the time of the mastectomy as long as the plastic surgeon was available within 4-6 weeks. If not, she would need to do the mastectomy by then as it was too risky to wait any longer. If the reconstruction was done at the same time as the mastectomy, I could have what's called 'skin-sparing and nipple-sparing surgery' which means that I could keep my breast skin and nipple and have the breast re-filled (my terminology!) with an implant or some of my own fat tissue (eg. from my tummy). If I just had a mastectomy I would lose the skin and nipple, affecting future reconstruction options. I had read extensively about reconstruction and I definitely wanted to see if I could have the reconstruction done at the same time as the mastectomy and the tummy fat one if possible - called a 'DIEP flap' procedure, which has the added bonus of a tummy tuck, but on the down side has a long recovery time. My surgeon agreed to send a referral to Plastic surgery and see if someone was available. She also raised the possibility of starting chemotherapy before the surgery, depending on when it would be. 

After seeing the surgeon I went in to see the physiotherapist at the breast clinic. She went through exercises I would need to do after surgery to regain movement in my arm and help healing. She seemed confident that I could return to hip hop dancing once this was all over. Maybe I'll be on stage again with my lovely dance mamas before 2022 is over! She then explained about lymph node removal and possible swelling (lymphoedema) of the arm that could result. She took incredibly detailed measurements all along and around my arms as a baseline measurement to use later to determine if swelling had occurred.


So, now more waiting. Waiting for the PET Scan and waiting for an appointment date with the plastic surgeon. Meanwhile I keep reading about breast cancer (when I feel able - sometimes it's too much and I get emotional and need a break), going for walks, planning Christmas (which has now been and gone and was lovely), sewing and spending time with people I love. I am taking things day by day and trying to do something nice every day, because waiting for phone calls about appointments and results means that planning anything is almost impossible. It's hard, but I'm in a bit of a rhythm now and I'm getting good (well a bit better) at pushing away thoughts that become too overwhelming. My partner is always a good listener to my ramblings and worries and I feel so much better after putting them into words. One day, I said to him that I was worried I might not have enough tummy fat to make a boob and he kindly reassured me that of course I did!!

Next I should have some news from the Plastic Surgeon. 

And for those who come here for the sewing, here's a bag I made last week. It's the Buckley Tote by Elbe Textiles with a few changes due to fabric constraints :)




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