Author: Naomi Dorland
September is Desmoid Tumour Awareness Month.
What is a Desmoid Tumour I hear you ask? I didn’t know either, until I was diagnosed with one. And I certainly never expected to be diagnosed with a Desmoid Tumour after twin pregnancy.
A lump under my c-section scar
When our twins were about 17 months old, I was laying in bed and I realised that there was a solid “bump” at one end of my c-section scar. I’m not talking about an infected hair follicle sized bump, I’m talking about something that was firm, and felt like it was about the diameter of a golf ball.
I was lucky in that my stomach went all the way down, back to pre-baby size, very quickly. Also, I am of fairly slim build. When I lay on my back, my hip bones protrude. So this lump was easy to feel when I was laying down. When I stood up though, you could barely feel it. I was busy with our 17mth old twins, so I didn’t really worry. I’ve had at least a dozen lots of surgery for endometriosis, and I am extremely prone to adhesions. So I just assumed it was endometriosis adhesions or scar tissue adhesions. I decided to ignore it, as I didn’t have time to have more surgery to remove it, and it wasn’t life threatening. Or so I thought!
A growing lump under my c-section scar
Two weeks later, when laying in bed I realised I could actually see the lump protruding from my lower stomach. I asked my partner Dave to feel it and he very quickly sat up in bed and said “You need to see someone about that!”. I replied that it was just adhesions, but I would make an appointment with the GP. It didn’t hurt, but I did wonder why it had grown so fast so quickly.
One week later the lump was very obvious, even when I was standing, so I called the GP. She sent me off immediately for an urgent ultrasound. I booked a place near Dave’s work, so I could drop the twins off at his work and have the ultrasound. I informed the ultrasound technician that it was “just scar tissue”. He did the scan, and then asked me to wait a moment. He returned with a senior technician, who re-did the scan. I was then informed me that he thought it was actually a tumour, and I needed an urgent biopsy. Unfortunately, the referral I had was only for an ultrasound, so I had to go back to the GP to get a referral for the biopsy! How ridiculous.
Desmoid Tumour after twin pregnancy
Two days later I was back getting the biopsy, and then that’s when things started to move really fast. I was informed that I had a very rare sort of tumour, a Desmoid Tumour. I was referred to a surgeon, who managed to squeeze me in the next day. He examined the report, confessed he didn’t know much about Desmoid Tumours and then told me he had a spot on his list the next day for surgery.
I didn’t feel I knew enough about what was happening to warrant jumping straight into surgery. I decided to take a day or two to think about it. And to be totally honest I really didn’t really feel comfortable with the guy operating on me when he didn’t know much about these tumours.
In the meantime, I had obviously turned to Dr Google, and I was quite surprised to find out that these Desmoid Tumours were indeed, quite serious. Desmoid Tumours are odd beasts. While they don’t metastasise, they are extremely locally aggressive. They also have octopus like tentacles, which wrap around organs until they cause organ failure. Desmoids love scar tissue and estrogen. So as a woman who had a caesarean, I was a prime candidate.
Desmoid tumours constitute 0.03% of all tumours. The estimated incidence in the general population is 2-4 per million people per year. Desmoid tumours are observed to be more common in persons aged 10-40 years but can occur in other age groups. Desmoid tumours can commonly occur in women after childbirth.www.rarediseases.org
Finding a Desmoid Tumour specialist
I managed to join an American Desmoid Support Facebook Group, and even though there were only 100 people in the group, they were very knowledgeable and gave me lots of advice. Armed with this advice, I headed back to the surgeon the following day and awkwardly told him I didn’t think he was the right person for me.
My GP was a bit lost, as she had no Desmoid Tumour experience, so she referred me to an Oncology specialist, who was lovely. However he couldn’t do the surgery I required, but was happy to look after me for my chemotherapy journey after the surgery.
By this time my head was reeling. All this talk about the benefits of Chemotherapy Vs Radiation was not what I was expecting!! He gave me a recommendation of someone who could do the surgery I needed. He even made me an appointment with the third doctor for the me, for the following day.
Dr Mark Smithers, a sarcoma specialist, was so lovely. A gentle and quiet spoken man who I immediately felt at ease with. He had had experience with three desmoid tumours in the past. And given how rare they are, I figured three was probably more experience than any other doctor in Brisbane.
He informed me he wanted to operate the following day. Desmoid tumours are extremely aggressive. And mine was literally growing by the day.
This was 10 days before our twins turned 18mths old. I said to him I couldn’t possibly have surgery tomorrow, as I was too busy!!!
He said I had no real choice, but given I had two young babies he would give me one week to get ready.
Preparing for major surgery when you have 18 month old twins
At the time all our parents lived (or worked) at least three hours away. It was a pure coincidence that Dave’s parents were coming for a visit that week for a week. They live in Hong Kong and this was a previously planned trip. This meant they would be able to help Dave with the twins while I was in hospital. So that was one big problem solved.
The next big issue was that the babies were still having three breastfeed each overnight. I was told I had to wean immediately as I would most likely need Radiation and/or Chemo. And I couldn’t breastfeed while undergoing this.
I quickly started to drop some of their day feeds. The day before my surgery we had a 50th party to go to, and Dave’s parents were babysitting. I didn’t want to go, as I wasn’t in the mood, but everyone convinced me I needed a night out. So I got dressed up and we headed out.
Before we left, I asked Dave to take some photos of my giving the babies what would almost be their last ever breastfeed. I will always treasure these photos. I’m proud I made it to 18 moths of breastfeeding, however I am angry that the decision to wean was not ours to make.
Surgery for a Desmoid Tumour after twin pregnancy
The surgery itself was huge. They had to extend my neat c-section scar from hip to hip. The tumour by this stage had grown down into my pelvic bone, and if needed he was going to have to remove part of my pelvic bone.
The tumour was also starting to compromise my bowel, but again, he was skilled enough to not have to remove any of my bowel. I did have to sign paperwork to say that I consented to him removing a section of my bowel, as based on the scans he thought he might have to.
What I did end up loosing was my entire left abdominal muscle, which was replaced with mesh.
Thankfully he was able to remove the entire tumour.
Waking up after my surgery and hearing he had managed to save my bowel (he described it as he “took little bites, like bites out of an apple” from my bowel) and that he had not had to remove my pubic bone (he said he literally scraped all the muscle off the bone to in the hope he got it all, as removing my pubic bone would have meant learning to walk again).
I’m not sure who was more relived about all of this “good” news. Me, or my very anxious parents who were by my bedside. Dave was at home with our twins.
An anxious wait for pathology results after Desmoid Tumour surgery
It took 5 days get the results back from pathology. Desmoids have loads of invisible tendrils, and if they are left behind, then the tumour will come back. Finally, we got the news that he had managed to get clear margins, but they were not able to measure them as they were margins of LESS than one millimetre.
Pathology measured the tumour at 10cm in diameter. It had doubled in size since the scan less than two weeks prior.
After 5 nights in hospital I was allowed home. I was thrilled to be re-united with my babies! And the little terrors had managed just fine without their three breastfeeds overnight!
I, on the other hand had not coped so well with weaning. The weaning pain was more intense than the pain from the surgery. I had to call a nurse in every 30 minutes to replace the frozen washers that were stuffed in my bra.
Caring for twins after Desmoid Tumour surgery
We knew I wasn’t going to be able to lift the babies for at least three full months, so we decided that we would have to put some alternative measures in place.
At 18 months of age it was a steep learning curve for our twins.
- I wouldn’t be able to lift them into them into their high chairs, so they had to learn to eat sitting at a little table and chairs.
- I was not able to push a pram, so they had to learn to walk and hold my hand.
- No lifting meant I couldn’t lift them into their cots, so we had to take the sides off so they could climb in themselves.
- I couldn’t lift them into their car seats, so Dave and I had to swap cars. I had been driving our Prado as it had more room for the pram. We swapped to our Mazda as then the kids could climb in themselves. Plus, I wasn’t using the pram anyway.
- On top of all of this, they had been abruptly weaned from the breast.
Surviving a Desmoid Tumour after twin pregnancy
I still don’t know if I have processed all that happened to me. It all happened so fast that I didn’t have any time to digest what was happening. When I look back at the week leading up to the surgery, all I can recall is a blur of phone calls to/from my parents, who were obviously really really worried. No matter how old you are, when you are sick, you just want your parents to give you a hug and make you feel better!
I wasn’t really concerned about the twins at the time, as I knew Dave would be fine with them. It wasn’t until I had to say goodbye to them and head to the hospital that it hit me that maybe I wouldn’t see them again. I ugly cried all the way to the hospital. Like full on ugly cried. Poor Dave, who was driving, was unable to comfort me. I never asked him what was going through his mind on that drive and if he was worried he was going to lose me. It had all happened so quickly, we hadn’t had time to discuss what would happen if I died.
Recover Surgery for a Desmoid Tumour after twin pregnancy
My recovery was hard. Loosing one half of my abdominal muscles meant I was very weak. And the was some nerve damage that took a really long time to heal and was quite painful.
Somehow we all coped. And thankfully I didn’t require radiation OR chemotherapy. Due to the small margins of the tumour he wants to leave that option there, in case I need it in the future. This was a huge gamble due to the minuscule margins. But he really wanted “another tool in his tool box, just incase”.
Unfortunately, Desmoid Tumours have an extremely high percentage of recurrence (approx. 40%) so I will never be officially “in the clear”. It means regular monitoring. I am blessed in that I have a slimish build, so I am vigilant about checking my scar. I’m on first name basis with the radiologist at my local clinic and he always keeps tabs on what the twins are up to.
December 2020 will be my 8th anniversary of being in the clear. Long may it continue.
For Australian Desmoid support please join Australian Desmoid Tumour Support.