After getting the results of my lumpectomy, I still had to wait another week before I could see my surgeon again and talk about the next steps in my treatment. As luck would have it, I didn’t have to wait as long as I thought.
The day after I was told I had breast cancer I had the strangest sensation in the breast I had had the lumpectomy on. It was sloshing! Yes, it felt like it was half full of liquid and I could hear it sloshing around as I moved. It was not painful. It was actually hysterical, and both Simon and I had a good laugh about it.
I had no idea if this was an issue, or if it was perfectly normal. Not knowing what else to do, I gave the surgeon’s office a call. I knew he wouldn’t be there as he was in London for a conference, but I thought the girls might be able to point me in the right direction at least.
The receptionist didn’t have any advice to offer, but she said the surgeon was actually there that day and I could come in for an appointment later in the afternoon. I jumped at the opportunity, not only to find out if the sloshing was a problem, but to talk to him more about my diagnosis and the plan moving forward.
While I was taking my seat and we are discussing my “bad” diagnosis, he was much more upbeat “No, no, this is a good result. I can totally fix this all up and you will be fine!” I guess he had a point, my cancer is not invasive, unlike most other people with breast cancer.
So we sat down and went through all the options for treatment. I was given a fantastic booklet from the National Breast and Ovarian Cancer Centre that not only explains everything, but has checklists of pros and cons and reasons why you should select one method over the other.
First up for me is more surgery since the lumpectomy did not give clear margins. I could go back and have more tissue removed, but again, there is no guarantee of getting clear margins even a second time. There is also only so much that can be removed without major deformity anyway. The first chunk was 5cm x 5cm x 2.5cm. I don’t exactly have the largest boobs ever, and if they take too much more out of my C-cup size, there won’t be a lot left!
If I went for this option I would also then need to undertake a course of radiation once clear margins were achieved to kill off any sneaky cancer cells that might be hiding. Even after all of that, I have about a 20% chance of having cancer in that breast again.
The other concern was constant monitoring and scans for the rest of my life. And since the mammogram did not pick this up, I would always be worried that the same could happen again. I would also have to take Tamoxifen for at least five years, a drug to block oestrogen, which has all sorts of horrible side effects including basically putting me into menopause.
The second option is a right breast mastectomy. By getting rid of my whole breast I would not have to go through radiation. It is of course a much larger surgical procedure, and then I have the whole issue of reconstruction to consider. This would lower my risk of cancer reoccuring in my right breast to less than 1%.
I thought I was done with choices, but then he started to discuss the risk of getting cancer in my left breast. As it stands now, I have double the chance of the average woman, or almost a 30% chance, of getting cancer on that side. I could take Tamoxifen, and it will lower the rate to about 18%. Or I could have a bilateral mastectomy and lower my overall rate to below 1%.
To me this was a no-brainer. I never want to go through this again. I have been lucky this time that it is not invasive, I don’t like to try that luck again. I also have too many ticks in the high risk column – I am younger in age, the DCIS is large compared to my breast size, it’s high grade, and currently margins are not clear.
So a bilateral mastectomy it is! I wish there was some other answer, I really do. I really don’t want to remove my breasts or go through such a major surgery, but the numbers don’t lie and I want to live a quality life without constantly worrying about when I will find the next tumour.
This also means I have a very good chance that I will not need any further treatment. During the surgery I will have one or two lymph nodes removed on my right side. If these are clear of cancer, then it definitely means no chemo or radiation and probably no Tamoxifen either. It turns this whole thing into surgery recovery not cancer recovery.
After the options for the surgery, discussion moved to reconstruction. The surgeon looked me over and then laid out my options.
The first option was reconstruction with implants. At the time of the mastectomy, expanders would be inserted under my pectoral muscles. This is the part that causes most of the pain with this procedure. Over time these expanders are filled with saline to create a new pocket against the chest wall. Eventually there is a second surgery to swap the expanders for implants. A third surgery can be done further down the track to reconstruct nipples if I want them. Both breasts can be done at the same time.
The second option was what is called a latissimus dorsi reconstruction. This uses skin, fat and muscle from the latissimus dorsi region – sort of just below the shoulder blade – to reconstruct the breast. This method has the benefit of using your own tissue and not introducing a foreign object into the body, and you wake up with new boobs straight away.
It does mean a longer surgery, a longer recovery time and even more scarring on another part of the body though. It also means only one breast can be done, I would have to wait six months and then go through it all again with the other breast.
I was not offered the more common DIEP or TRAM flap reconstructions. These are similar to the latissimus dorsi reconstruction but both use the skin, fat and/or muscle from the stomach area, resulting in new boobs and a tummy tuck! I apparently do not have enough spare skin on my stomach to use.
Of course I could also choose to not have any reconstruction at all. In some cases reconstruction – at least at the time of the mastectomy – is not an option, so in this case I am lucky that it is.
I have chosen to go with the implant option. While yes there are risks with implants, I don’t want to go through two big surgeries. I also don’t want more scars, I am going to be an unsightly mess as it is. Trust me, there is nothing pretty about mastectomy. I am going to loose all feeling in my chest, so it will be like having a big numb patch with some weights in it. Complications, infections and excruciating pain are not out of the question.
But if this is all I have to do to be cancer free and not have to go through chemo and radiation and hormone treatment (which could all have life long effects) then I can put up with a little pain.
I had a week to consider my options before heading back to the surgeon again for my follow up from my lumpectomy. My bandages were removed and I was pleased to see the incision around my areola was almost completely healed. I know I am a good healer and I really hope that holds me in good stead.
I discussed my options again and asked a few more questions, and ultimately set my surgery for December 5th. The surgeon had said that I could take a few weeks, and this was convenient for a few reasons. Firstly we could take a trip we have booked to Bali a week earlier. It also means I can continue to help out my sister-in-law with looking after her kids until almost the end of the school term so she doesn’t have to put them in childcare. It gives me plenty of time to prepare, both physically and mentally.
I am also going to take the time to get a second opinion. I don’t think I am going to hear anything different, and I am happy with all the information provided, but it’s such a big surgery I would like the comfort of hearing I am making the right choice.
Now it’s really just a waiting game until December 5th.