I got a letter the other day from my Genetics Counsellor and a further letter from my Consultant Clinical Geneticist, both stating that I was likely in no immediate risk from Ovarian Cancer in the years leading to my 40th birthday.
"I thought that I would just write to reiterate the information that the risk of ovarian cancer over the next few years is really quite small. One of the original studies of BRCA families found that less than 1 in 100 women developed ovarian cancer before the age of 40 and after this age the risk became much more significant."
I was invited to come back at any point if I was worried or changed my mind but that it would be advisable to chat again closer to the age of 40.
So, how do I feel? I've had a blood test returned from me CA125 test as within normal range. The range being between 0 and 35. My results were 32.4. Does this high end of normal result worry me? Strangely, not a lot. I feel strangely unpanicked about it, even though my lifetime risk is upto 60% because of my BRCA1 gene, no-one in my family history has developed Ovarian Cancer that we know of. This is obviously a contributing factor to my relaxed feeling about the disease and my high risk. Before, when I had my natural breasts, my danger boobs, I worried about ALL of it, all of my risks were heightened to me but now, now that I have had my breast reconstruction surgery, I feel calmer, relaxed. It is amazing. It was a sacrifice but a no brainer really. I am alive, well, strong again. I am a different me, stronger.
I found this interesting study about women who developed cancer with BRCA mutations, the results are pretty scary averaging about 70% of those in the study developed cancer by the age of 50. risk for hereditary cancer
So I rest lightly on my laurels for a while. I cannot even contemplate getting my ovaries out right now or in the next couple of years, there is much to do and without any medical benefits of doing it now, just a prolonged risk of osteoporosis for being without the hormones and a few less periods to endure, I will wait for a couple of years before I delve into this again.
I will stay vigilant though. Ovarian Cancer is not silent as most thin, there are signs but subtle ones. Here is a webpage about symptoms if you are worried or interested. Ovarian Cancer Symptoms.
Friday 31 July 2009
Tuesday 14 July 2009
67. Light at the end of the boob tunnel
The boob tunnel? Light? Yes..yeah. Today I saw the end. I don't want any complications thank you, just straight forward tidying up surgery, just like I've ordered. I am stoked as surfers would say, stoked. It's been almost 4 months since my breast reconstruction surgery and things have settled down really well, fantastic actually. I made a decision to just take things a little slower and not to rush the nipple building quest.
So I battled the hoards of visitors for a parking space at the hospital today. The outpatient department was heaving..not like the Primrose Breast Clinic I usually attend. I suddenly felt like one of the many. It was odd. Every time I went to Primrose I felt my situation was more serious but now, sat with all these people with a variety of health or physical problems, I felt quite normal. How refreshing!
I wondered what they were all here for. The lady sat in front of me was elderly and frail, the lady next to me had a boisterous baby and the couple next to me were concerned about running late. I waited only 5 minutes before being called by Sister. She was quite a cold woman, no eye contact and left me with a gown in a room and I felt my heart sink a little. Had I made a mistake being referred away from the Breast Care Clinic? I'd asked to be referred to Plastics team to look at the tidy up work, nipples, dog ears (the ends of my scars) etc. My Breast Surgeon is a very busy man, he has reconstruction and cancer patients to deal with. I'd had my appointments with him shifted around so many times and waited hours to see him only to have only minutes of his time, I felt like he wasn't listening to what I wanted, my concerns, my views on how my body was behaving, changing, how I felt. I felt like I was being railroaded into having the nipples that my Breast Surgeon does and that I didn't have much choice in what they would look like. That bothered me a lot. I spoke up and I waited for a referral. I feel quite guilty for taking away my Breast Surgeon unfinished work and taking it to someone else to complete. As a creative person, I would be bothered by that. It's like baking a cake and letting someone else put the icing and cherry on the top!
Minutes later I was in my gown, marvelling at it's pattern. Anyone noticed that the NHS gowns are covered in multicoloured words: 'Hospital Property'. What? What would possess anyone to steal one of those gaping at the back gowns? It made me laugh and I also had a quiet snigger to myself when the Sister explained that I must put it on with the split at the front because the surgeon would be inspecting my chest area. Really? Well I never! ?? Sister left and a cheerful nurse came in and was surprised to see me. She complained that Sister often interfered with her patient list and she should just keep busy elsewhere. We laughed. She explained that the Plastic Surgeon (PS) would be in shortly. And she was right. He was a relaxed, comfortable man and I immediately felt happy. He studied my notes, chit chatted with me, made some jokes and then we got down to the business of boob fixing discussion.
(Boob Flash count..3 more today. I must get a total together.)
We talked about nipples first, he talked about creating new ones with the existing skin, grafts or prosthetics. I questioned him about taking moulds of my nipples before my surgery so that a replica of my old faithful nipples would be made instead of creating something different. He was impressed at the idea and saddened that it had not been thought about. He would try and get that in place so that all patients who are seen for preventative mastectomies get the mould option. I told him I was happy with creating new nipples from my nipple patch and he proceeded to draw on me a bit like the image below but with less triangular ends.
Before, I had been offered a semicircular cut and a twist to create a button of a nipple. These go flat again quite quickly and I wasn't keen on this option at all. This option is longer lasting and more realistic. My nipple patch is about 5cm across which is bigger than the areola area of my old nipples. This makes my new boobs feel a lot smaller because of the large pink scar rings that are currently there. I asked if they could be made smaller and the PS agreed and said it could be done but they may end up being more oval. He can make a new circular cut and bring the outside edge in to meet it. I think I will see how things fade in the next 6 months to whether we try to make them smaller or not. I guess I was worried about having a big scar ring around the outside of my new nipples. Would they look like targets? Hmm..anyway..I have some deep indentations at the bottom of each nipple patch where one edge has healed inside the other creating a lip. These need sorting out and will be done at the same time as nipple creation and dog ear tidy up.
Levelling Left Boob. My left boob is not as defined as the right, there is more muscle and fat under my left arm and side than the right. They hoped it was just swelling but it's not. This means that the 'contents' of my new left boob were more spread out than my right. I guess I have a little less volume in that one and it doesn't hang the same as the right one. It has always seemed to me that the internal tissue was stitched too far down my body and stopped the hang crease appearing. PS is going to go in through the nipple patch and reposition some contents with some stitches at the bottom of the left boob at the front. This is good news as it means I might be able to wear a bra more comfortably.
Dog Ears? The ends of my back scars near my waist. On that subject he will cut an elongated oval to take out the extra tissue at the end of the scar and close it up again. This will make my scars longer but they will be fine and fade. I guess I will have two 10 inch scars on my back but hey, I have 2% risk of breast cancer and not 85% so who cares about my back scars?
So, there we go - all sorted. PS will speak to Breast Surgeon and discuss the way forward. He expressed that surgeons are used to completing their work but actually what is important is the patient and what they want, afterall it is their body and they have to live in it. He did say that Plastics were now working more closely with the Breast team to do the finishing work after the major stuff was done. This would give them more time to deal with the major stuff and Plastics could deal with the less time pressured stuff, the tidying up. I was happy to hear this and I am happy to have a talkative, considerate and funny PS to carry out the cherry topping surgery to my new boobs.
March 2010..yay! I feel like I can actually relax for the rest of the year now, get settled into uni and start moving forward with my life again. No more limbo. I am in control again, not my BRCA1 gene!
OVARY UPDATE! I had my UKFOCSS blood sample results CA125 test = normal range. I await my transvaginal ultrasound scan appointment of my ovaries. Phew!
So I battled the hoards of visitors for a parking space at the hospital today. The outpatient department was heaving..not like the Primrose Breast Clinic I usually attend. I suddenly felt like one of the many. It was odd. Every time I went to Primrose I felt my situation was more serious but now, sat with all these people with a variety of health or physical problems, I felt quite normal. How refreshing!
I wondered what they were all here for. The lady sat in front of me was elderly and frail, the lady next to me had a boisterous baby and the couple next to me were concerned about running late. I waited only 5 minutes before being called by Sister. She was quite a cold woman, no eye contact and left me with a gown in a room and I felt my heart sink a little. Had I made a mistake being referred away from the Breast Care Clinic? I'd asked to be referred to Plastics team to look at the tidy up work, nipples, dog ears (the ends of my scars) etc. My Breast Surgeon is a very busy man, he has reconstruction and cancer patients to deal with. I'd had my appointments with him shifted around so many times and waited hours to see him only to have only minutes of his time, I felt like he wasn't listening to what I wanted, my concerns, my views on how my body was behaving, changing, how I felt. I felt like I was being railroaded into having the nipples that my Breast Surgeon does and that I didn't have much choice in what they would look like. That bothered me a lot. I spoke up and I waited for a referral. I feel quite guilty for taking away my Breast Surgeon unfinished work and taking it to someone else to complete. As a creative person, I would be bothered by that. It's like baking a cake and letting someone else put the icing and cherry on the top!
Minutes later I was in my gown, marvelling at it's pattern. Anyone noticed that the NHS gowns are covered in multicoloured words: 'Hospital Property'. What? What would possess anyone to steal one of those gaping at the back gowns? It made me laugh and I also had a quiet snigger to myself when the Sister explained that I must put it on with the split at the front because the surgeon would be inspecting my chest area. Really? Well I never! ?? Sister left and a cheerful nurse came in and was surprised to see me. She complained that Sister often interfered with her patient list and she should just keep busy elsewhere. We laughed. She explained that the Plastic Surgeon (PS) would be in shortly. And she was right. He was a relaxed, comfortable man and I immediately felt happy. He studied my notes, chit chatted with me, made some jokes and then we got down to the business of boob fixing discussion.
(Boob Flash count..3 more today. I must get a total together.)
We talked about nipples first, he talked about creating new ones with the existing skin, grafts or prosthetics. I questioned him about taking moulds of my nipples before my surgery so that a replica of my old faithful nipples would be made instead of creating something different. He was impressed at the idea and saddened that it had not been thought about. He would try and get that in place so that all patients who are seen for preventative mastectomies get the mould option. I told him I was happy with creating new nipples from my nipple patch and he proceeded to draw on me a bit like the image below but with less triangular ends.
Before, I had been offered a semicircular cut and a twist to create a button of a nipple. These go flat again quite quickly and I wasn't keen on this option at all. This option is longer lasting and more realistic. My nipple patch is about 5cm across which is bigger than the areola area of my old nipples. This makes my new boobs feel a lot smaller because of the large pink scar rings that are currently there. I asked if they could be made smaller and the PS agreed and said it could be done but they may end up being more oval. He can make a new circular cut and bring the outside edge in to meet it. I think I will see how things fade in the next 6 months to whether we try to make them smaller or not. I guess I was worried about having a big scar ring around the outside of my new nipples. Would they look like targets? Hmm..anyway..I have some deep indentations at the bottom of each nipple patch where one edge has healed inside the other creating a lip. These need sorting out and will be done at the same time as nipple creation and dog ear tidy up.
Levelling Left Boob. My left boob is not as defined as the right, there is more muscle and fat under my left arm and side than the right. They hoped it was just swelling but it's not. This means that the 'contents' of my new left boob were more spread out than my right. I guess I have a little less volume in that one and it doesn't hang the same as the right one. It has always seemed to me that the internal tissue was stitched too far down my body and stopped the hang crease appearing. PS is going to go in through the nipple patch and reposition some contents with some stitches at the bottom of the left boob at the front. This is good news as it means I might be able to wear a bra more comfortably.
Dog Ears? The ends of my back scars near my waist. On that subject he will cut an elongated oval to take out the extra tissue at the end of the scar and close it up again. This will make my scars longer but they will be fine and fade. I guess I will have two 10 inch scars on my back but hey, I have 2% risk of breast cancer and not 85% so who cares about my back scars?
So, there we go - all sorted. PS will speak to Breast Surgeon and discuss the way forward. He expressed that surgeons are used to completing their work but actually what is important is the patient and what they want, afterall it is their body and they have to live in it. He did say that Plastics were now working more closely with the Breast team to do the finishing work after the major stuff was done. This would give them more time to deal with the major stuff and Plastics could deal with the less time pressured stuff, the tidying up. I was happy to hear this and I am happy to have a talkative, considerate and funny PS to carry out the cherry topping surgery to my new boobs.
March 2010..yay! I feel like I can actually relax for the rest of the year now, get settled into uni and start moving forward with my life again. No more limbo. I am in control again, not my BRCA1 gene!
OVARY UPDATE! I had my UKFOCSS blood sample results CA125 test = normal range. I await my transvaginal ultrasound scan appointment of my ovaries. Phew!
66. Off to Plastics
It's been a while since I last posted. Not a lot and a lot happening in life.
Today, in an hour, I have my first meeting with a Plastic Surgeon to review my current physical state after my initial surgery, talk about the way forward and nipples. I am apprehensive but excited too. There is little time to get surgery organised to fit around my first term of uni but I am sure that I can wait a good while now and not panic. I think I would really like to move things forward in March, that will be a year on and I will be on Easter holiday so can recover comfortably without worrying too much about settling into uni. I will almost be through my first year by then.
Well, not a lot has changed physically, I am active again, I still have tightness, some muscle spasms but very few now..still oversensitive in some areas, numb in the back of my left arm and both armpits (which makes shaving them an adrenalin sport these days..will I cut myself or not..so far the game is in my favour Me = 50 Armpits = 0!)
Better get sorted out, I have to fight for a parking space and get some wedge to pay for the trip!
Update later..
Today, in an hour, I have my first meeting with a Plastic Surgeon to review my current physical state after my initial surgery, talk about the way forward and nipples. I am apprehensive but excited too. There is little time to get surgery organised to fit around my first term of uni but I am sure that I can wait a good while now and not panic. I think I would really like to move things forward in March, that will be a year on and I will be on Easter holiday so can recover comfortably without worrying too much about settling into uni. I will almost be through my first year by then.
Well, not a lot has changed physically, I am active again, I still have tightness, some muscle spasms but very few now..still oversensitive in some areas, numb in the back of my left arm and both armpits (which makes shaving them an adrenalin sport these days..will I cut myself or not..so far the game is in my favour Me = 50 Armpits = 0!)
Better get sorted out, I have to fight for a parking space and get some wedge to pay for the trip!
Update later..
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