Today I went to see my breast surgeon, Miss L____, for an appointment we had scheduled a while ago. The original plan was for me to have my preventative oophorectomy back in February, recover from that, write my masters dissertation, and then have my preventative double mastectomy in September. As you know. things have not gone quite to plan, and I'm now recovering from much more major surgery, and undergoing a course of chemotherapy.
Miss L____ gave me a brief breast examination, and didn't find anything untoward. She then caught up with the various things I've done since we last saw each other, in preparation for my surgery. I've discussed all my options with my Breast Care Nurse and decided to opt for a bilateral mastectomy without reconstruction. I've had my medical photos taken (these were taken at the Royal London Hospital and it was a very strange experience, almost like a fashion shoot! And there was me, naked from the waist up, in front of all the professional photography lights having my 'before' photos taken!). And I've seen the Cancer Psychologist, to get signed off for not having reconstruction.
Today's news was slightly annoying. Apparently when someone has had such serious surgery as I've just had, they like to wait at least 2 years before performing any further elective surgery. Two years! That would mean I cannot have my breasts removed until April 2021. As you can imagine, my recent second cancer diagnosis has made me feel a sense of urgency about getting my breasts removed. I know that this BRCA gene mutation is lethal, and my boobs feel like two ticking timebombs attached to my chest! I just want to get rid of them ASAP. So we talked through everything, and I have a lot of things going in my favour. I'm young, fit, a non-smoker, and I'm recovering well from my recent surgery. Also I'm doing well with the carboplatin so far. And I don't want reconstruction, so the surgery I'm opting for is less major than if I was having reconstruction. Apparently they have a big meeting once a quarter with all of the consultants from all the different departments, kind of like an uber-MDM, where both the gynae team and the breast team will attend, so they are going to discuss my case in the next meeting, at the beginning of July. Miss L____ knows that I'd like to have the surgery as soon as possible so she will put my case forward, and they will discuss when is the earliest possible time they're happy to operate. And fingers crossed it is not too far away!
In the meantime, she's going to check that my annual MRI, mammogram and ultrasound are all booked in for October, so that I can at least get some peace of mind that there's nothing sinister growing in there in the meantime. And I'm going to see her again in September once I'm finished with chemo, so we can talk about next steps, and hopefully get a date in the diary. It's a bit disappointing as I was keen to get it done, out of the way, and be on the road to proper recovery, with all treatment (hopefully) behind me. But of course I want to do what's right for my body, and to get the balance right of reducing my risk of a new cancer, while also ensuring my body has had enough time to recover from my recent surgery. So for now, I shall wait.
In other news, I am planning to go back to work on Monday. I've been off work for 3 months in total, which feels like an incredibly huge amount of time, but I really needed that time to recover from both surgeries. I'm going to work through chemo as I did before, and I've moved my day off each week to Thursdays (as I only work 4 days a week) to accommodate my chemo treatment every 3 weeks, and I will work from home on Fridays on my chemo weeks. I will also have some flexibility if I get hit by cancer-related fatigue, in that I can take short days if necessary. My employers have been incredibly supportive throughout this whole malarkey, which is great. I'm excited about going back, I have missed work a lot, and my team especially, but I am also quite nervous. I've never had such a long time off work before and I know that lots of things have changed since I left back at the end of February. Some people that I worked closely with have left, and others have been hired in my team who I've never met. I've also been spending my days doing very low-key activities, such as reading, crocheting, doing little walks. And taking afternoon naps! All this has been essential for my recovery, as I have prioritised physical healing and my mental health. But now I have to get back up to speed, pick up the pace of life I had before and go back to my leadership role. Hopefully I will get back to it like a duck to water, but there will be butterflies on Monday morning for sure!
Showing posts with label planning. Show all posts
Showing posts with label planning. Show all posts
Tuesday, 28 May 2019
Thursday, 2 May 2019
Pathology results and a plan
Bit of an update this one, brace yourselves. Last week I saw someone from my surgeon's team at the Royal London Hospital for my post-op pathology results (my surgeon was on holiday so I saw someone new). I received great news, they didn't find anything dodgy in any of the organs, glands and other stuff they removed during my major surgery on 2 April. So the tubo-ovarian cancer that they found was limited to just a 1.7mm sized tumour in only one of my fallopian tubes, which they had already removed at the end of February. This is good news on a number of levels. It means they got it all, so there's none left to remove or nuke, but the surgery was not in vain either. As I carry the BRCA1 mutation, this increases the likelihood of it coming back. But now they've removed pretty much everything it could possibly come back in, so I'm giving myself the best possible chance of remaining cancer-free after all of this and getting on with my life. The surgeon said that in their MDM (Multi-Disciplinary Meeting) they had argued about whether or not I even needed to have chemotherapy! Medicine is not an exact science, they just have to go on studies of people with similar cancer situations to mine; their own experience; and a bit of instinct. And as they were completely divided as a group, patient opinion also forms a part of it. Tanai and I have been reading studies about ovarian cancer, and in instances where the cancer was contained as mine was, patients who have the complete surgery I had, followed by a course of chemotherapy, have the best outcomes. For me it's a no-brainer -- if I didn't have chemo and it came back in the future, I would never forgive myself for not giving myself the best possible chance. So we opted 'yes' for chemo.
So yesterday we went to the general oncology department at Bart's for my first appointment there. The team leader is a woman called Dr M_____ who was lovely and clearly was one of the people in the MDM who voted 'for' chemo, so she was pleased with my decision. However, the other good news is that they are not going to give me two different drugs as they originally planned, they are only going to give me one drug, called Carboplatin, and hair loss is not one of the common side effects of this! I'm so pleased I will get to keep my hair this time. And I should tolerate it pretty well as it's not as harsh as the chemo drugs I had for breast cancer, so I should find it less horrid. This has made me feel so much better about the next few months, knowing that I have every hope of tolerating the drug and recovering afterwards. So my first chemo is on 16 May, then they will be every 3 weeks for 6 rounds, with my final infusion on 29 August, all being well. The routine will be that I get my bloods done the week before, see the oncologist on the Wednesday and if all is well I'll have my chemo on the Thursday each time. I got my bloods done this morning for the first round so I'm all set to go.
Interestingly, the oncologist I saw yesterday was Dr H____, and he was actually the registrar who agreed to refer me for the BRCA gene test in the first place, after my oncology team had refused me 3 times! He must have been stepping in for someone or something, as I have not seen him since then. It was great to see him again and get the chance to thank him. He was a bit taken aback when I said 'Ah we've met before! I have to thank you, I think you saved my life!'. Bless him, he's quite young and I think the only reason he referred me was because he was intimidated by me! But it has had a good outcome, and my words may perhaps alter his decision-making in future, which could help save someone else's life, who knows. I do think it's important to give feedback to my medical team where I can. Like the surgeon said, medicine is not an exact science, so if they can have the benefit of real life experience, it can help them in their decision-making.
So, other clinic appointments I have had over the last few weeks. I went to the lymphodema clinic again for a follow-up. I was looking forward to this visit, as I was only being treated for my right arm last time (due to 2 lymph nodes being removed from my right armpit during my breast surgery), but now that I've had all my pelvic lymph nodes removed, and my para-aortic lymph nodes, I wanted to ask questions about what other lymphodema risks I have, and what preventative measures I could take to minimise the risk of problems. Unfortunately the regular nurse had left, and the guy covering her position had no idea about anything! What a wasted visit. They have booked me for another appointment in 3 months' time, and ordered me some compression stockings in the meantime, but I was pretty irritated by this!
I also saw a member of the Cancer Psychology team, for an appointment which had been scheduled to discuss my upcoming preventative mastectomy. Rather bizarrely, if you wish to have a mastectomy without reconstruction, they insist that you get 'signed off' by a psychologist first (there is no equivalent process for women who wish to have reconstructive surgery). However, upon learning about my 'developments' we ended up talking about all sorts, and we have agreed to a couple more sessions before she'll sign me off for the mastectomy surgery. It was a good chat, and she gave me some more useful analogies to think about. One was about allowing myself to feel emotional. I mentioned that I am definitely feeling more emotional this time round (I have 'leaky eyes'!), and that I'm actually okay with this, as I'm finding crying to be a welcome release (I definitely don't think I cried enough the first time round!). She said to imagine I was in a swimming pool and the 'negative' emotions were like an inflatable ball I was trying to hold under the water. If you try to keep the ball under the water, you find that you're using all your energy to keep it there, and you have no time or energy to do other things, such as enjoy being in the water! Whereas if you simply let the ball float, and push it away from time to time, you'll be able to splash about and enjoy yourself, and when the ball comes back again you can just push it away and get on with having fun. I really liked this visual metaphor, and I think that's how I feel about my emotions this time around.
I've also been seeing the nurse at my GP every other day, and she's been re-packing and re-dressing the small wound at the bottom end of my scar. She's very pleased with how this is progressing, she says it's getting smaller and looking very clean, so that's good.
Generally in myself I'm feeling stronger and like I have more energy. I can just about put my own shoes and socks on now, which is useful! And I am starting to do little walks on my own and some gentle exercise. I'm sleeping well and feeling less pain. I even got out to the theatre last night, which was a huge achievement! We went to watch the London Marathon near Blackfriar's Bridge last weekend, as it's just a short walk from our flat, and I stood there for over an hour watching the runners. I felt very emotional seeing everyone running for cancer charities that have helped me, and I'm inspired to do something similar once I am well again, to raise some money for Bart's Hospital, which has saved my life twice! We shall see what I come up with.
Thanks for persevering with this long update. Feeling good, on the right track, let the chemo begin!
So yesterday we went to the general oncology department at Bart's for my first appointment there. The team leader is a woman called Dr M_____ who was lovely and clearly was one of the people in the MDM who voted 'for' chemo, so she was pleased with my decision. However, the other good news is that they are not going to give me two different drugs as they originally planned, they are only going to give me one drug, called Carboplatin, and hair loss is not one of the common side effects of this! I'm so pleased I will get to keep my hair this time. And I should tolerate it pretty well as it's not as harsh as the chemo drugs I had for breast cancer, so I should find it less horrid. This has made me feel so much better about the next few months, knowing that I have every hope of tolerating the drug and recovering afterwards. So my first chemo is on 16 May, then they will be every 3 weeks for 6 rounds, with my final infusion on 29 August, all being well. The routine will be that I get my bloods done the week before, see the oncologist on the Wednesday and if all is well I'll have my chemo on the Thursday each time. I got my bloods done this morning for the first round so I'm all set to go.
Interestingly, the oncologist I saw yesterday was Dr H____, and he was actually the registrar who agreed to refer me for the BRCA gene test in the first place, after my oncology team had refused me 3 times! He must have been stepping in for someone or something, as I have not seen him since then. It was great to see him again and get the chance to thank him. He was a bit taken aback when I said 'Ah we've met before! I have to thank you, I think you saved my life!'. Bless him, he's quite young and I think the only reason he referred me was because he was intimidated by me! But it has had a good outcome, and my words may perhaps alter his decision-making in future, which could help save someone else's life, who knows. I do think it's important to give feedback to my medical team where I can. Like the surgeon said, medicine is not an exact science, so if they can have the benefit of real life experience, it can help them in their decision-making.
So, other clinic appointments I have had over the last few weeks. I went to the lymphodema clinic again for a follow-up. I was looking forward to this visit, as I was only being treated for my right arm last time (due to 2 lymph nodes being removed from my right armpit during my breast surgery), but now that I've had all my pelvic lymph nodes removed, and my para-aortic lymph nodes, I wanted to ask questions about what other lymphodema risks I have, and what preventative measures I could take to minimise the risk of problems. Unfortunately the regular nurse had left, and the guy covering her position had no idea about anything! What a wasted visit. They have booked me for another appointment in 3 months' time, and ordered me some compression stockings in the meantime, but I was pretty irritated by this!
I also saw a member of the Cancer Psychology team, for an appointment which had been scheduled to discuss my upcoming preventative mastectomy. Rather bizarrely, if you wish to have a mastectomy without reconstruction, they insist that you get 'signed off' by a psychologist first (there is no equivalent process for women who wish to have reconstructive surgery). However, upon learning about my 'developments' we ended up talking about all sorts, and we have agreed to a couple more sessions before she'll sign me off for the mastectomy surgery. It was a good chat, and she gave me some more useful analogies to think about. One was about allowing myself to feel emotional. I mentioned that I am definitely feeling more emotional this time round (I have 'leaky eyes'!), and that I'm actually okay with this, as I'm finding crying to be a welcome release (I definitely don't think I cried enough the first time round!). She said to imagine I was in a swimming pool and the 'negative' emotions were like an inflatable ball I was trying to hold under the water. If you try to keep the ball under the water, you find that you're using all your energy to keep it there, and you have no time or energy to do other things, such as enjoy being in the water! Whereas if you simply let the ball float, and push it away from time to time, you'll be able to splash about and enjoy yourself, and when the ball comes back again you can just push it away and get on with having fun. I really liked this visual metaphor, and I think that's how I feel about my emotions this time around.
I've also been seeing the nurse at my GP every other day, and she's been re-packing and re-dressing the small wound at the bottom end of my scar. She's very pleased with how this is progressing, she says it's getting smaller and looking very clean, so that's good.
Generally in myself I'm feeling stronger and like I have more energy. I can just about put my own shoes and socks on now, which is useful! And I am starting to do little walks on my own and some gentle exercise. I'm sleeping well and feeling less pain. I even got out to the theatre last night, which was a huge achievement! We went to watch the London Marathon near Blackfriar's Bridge last weekend, as it's just a short walk from our flat, and I stood there for over an hour watching the runners. I felt very emotional seeing everyone running for cancer charities that have helped me, and I'm inspired to do something similar once I am well again, to raise some money for Bart's Hospital, which has saved my life twice! We shall see what I come up with.
Thanks for persevering with this long update. Feeling good, on the right track, let the chemo begin!
Friday, 7 April 2017
Changing directions
When they say cancer is a rollercoaster, they are really not kidding. This week was definitely testament to that. On Thursday I finally met my oncologist, Dr S___. I instantly loved her, and I know that we are going to get on; she's my kind of lady. An older, Indian woman with a whole heap of experience, she has worked all over the world, run medical trials, presented at conferences and is a total cancer rockstar. And she has a no-nonsense, pragmatic attitude which suits me down to the ground. She talked me through some options but on Thursday they were still awaiting the results of the HER2 test which could potentially make a significant difference to my treatment plan.
As an aside, each time I visit anyone for a consultation at St Bart's, they write up the consultation outcomes and send them to my GP. I get a letter in the mail (yes, snailmail) which is a 'cc' of the letter which goes to my GP. The last one, from my surgeon, Miss L___, had contained a worrying line. It said 'I think cosmetically she would benefit from neoadjuvant chemotherapy'. Cosmetically? This is not high on my list of concerns! I care more about getting the best treatment and ridding my body of cancer than what my cleavage will look like post-surgery! Neoadjuvant means to receive treatment such as chemo before surgery rather than afterwards (which is called 'adjuvant'). I had googled this (of course) and read that chemo has the same effectiveness whether it's given before or after surgery, but it can make a difference to the surgical outcomes (for example, make the tumour smaller so less of my boob is removed).
Anyway, when I mentioned to Dr S___ that I really wasn't concerned about any 'cosmetic' outcomes she totally stopped in her tracks. Apparently if I am HER2 negative, I could have surgery and not even need chemo at all! This stunned me. My surgeon was making assumptions about me rather than giving me options. In the same way that she assumed I would want fertility treatment, she was assuming that I was concerned about what my cleavage looks like. (In case you haven't guessed yet, this made me kind of angry.) To have made a decision about my treatment which meant that I could have unnecessary chemo was astounding to me.
Anyway, we could not make the decision until the HER2 results were in, so Dr S___ immediately stopped my consultation. She said she would chase the results but that I should consider that I may be going into surgery next week rather than chemo, as she predicted I would be HER2 negative (apparently my tumour is so receptive to oestrogen and it's rare that these types of cancers are also HER2 positive).
I then went into work rather light on my feet for the rest of the day! There is a chance I might not need chemo after all! Gosh, what a glimmer of hope.
Sadly, the glimmer was shortlived. She called around 6pm and said that I am HER2 positive and so should definitely have chemo first. Oh, and could I come back at 9.30 the next morning! So Tanai and I were back at St Bart's early this morning to get the full picture. Apparently only 10% of cancers are both HER2 positive and receptive to oestrogen, so I guess I'm rather rare. Not sure how I feel about that as I'd rather be in the statistically predictable group, but there it is. So this morning Dr S___ gave me the full low-down on chemo and I signed a consent form so that they can progress with my treatment.
She explained some of the main side effects, and some of the regular tests I'll be getting over the coming months, and why. Also, in true project manager style, I'd written down lots of questions in my blue notebook, each with a space left for the answers, so we went through those too. Tanai and I have been doing quite a bit of research: each time I get a letter with the results of the consultation we google all the acronyms and write down any questions we have, so that we can go through them in our next visit. I imagine this will become quite a routine during my treatment. So here is a bit of a summary.
I will need to have a few more tests to check certain parts of my body that can be affected by the chemo. So I have to have an 'echo' test which is to check my heart, because the drugs can impact on my heart. They will keep checking this every 3 months and if my 'ejection fraction' goes down by more than 10% they will either reduce the dosage or pause/stop treatment. I also need a CT scan and a full body bone scan. The drugs I will be on can affect my bones, my liver, my kidneys, my blood, in rare cases chemo can cause cancer (ah, the irony!), nerve damage and, to top it all, it will probably bring on early menopause. Thank goodness it will also nuke my breast cancer, otherwise this is a ridiculous thing to sign up to by choice.
The more 'regular' side effects are that I will feel nauseous (Dr S___ prescribed me some kick-arse anti-nausea medication), tired, I will be more susceptible to catching viruses, I will probably lose my hair and I will probably lose my sense of taste (this makes me very sad, but thankfully it's only during treatment, not forever). For my birthday, the wonderful Rosser family in Sydney bought Tanai and I 'high tea' at the Ritz, so I've decided to save this as my treat when I'm all done with chemo and get my taste buds back. It's great to have something wonderful like that to look forward to.
When I told her that I was planning to continue going to work all the way through my treatment she was very pleased. She said she encourages all her patients to continue working, and she said if I feel as though I have the energy, I should continue to cycle into work too! She advised that if I do want to take the tube, I should avoid the rush hour, as it's likely I will catch any germs going around.
So, once we were all done, I trotted off to get my bloods done, got my appointments booked in for my CT and bone scans, and headed into work.
All in all, I'm quite glad we're still doing it this way round. Having chemo first does mean that the surgery is likely to be less invasive, as the tumour will be smaller. Also it means I get to have Pertuzumab, which has only been licenced since December 2016 and has fantastic effects. It increases the effectiveness of the other drugs and dramatically reduces the chances of the cancer returning. But this drug is only available to patients having chemo before surgery, not afterwards, so I'm very lucky to be having this.
Tomorrow I'm going shopping with a couple of girlfriends to buy some headscarves, and we are going to work out how to tie them somewhat stylishly by studying youtube videos, as I really want to be prepared for this. Should be fun!
As an aside, each time I visit anyone for a consultation at St Bart's, they write up the consultation outcomes and send them to my GP. I get a letter in the mail (yes, snailmail) which is a 'cc' of the letter which goes to my GP. The last one, from my surgeon, Miss L___, had contained a worrying line. It said 'I think cosmetically she would benefit from neoadjuvant chemotherapy'. Cosmetically? This is not high on my list of concerns! I care more about getting the best treatment and ridding my body of cancer than what my cleavage will look like post-surgery! Neoadjuvant means to receive treatment such as chemo before surgery rather than afterwards (which is called 'adjuvant'). I had googled this (of course) and read that chemo has the same effectiveness whether it's given before or after surgery, but it can make a difference to the surgical outcomes (for example, make the tumour smaller so less of my boob is removed).
Anyway, when I mentioned to Dr S___ that I really wasn't concerned about any 'cosmetic' outcomes she totally stopped in her tracks. Apparently if I am HER2 negative, I could have surgery and not even need chemo at all! This stunned me. My surgeon was making assumptions about me rather than giving me options. In the same way that she assumed I would want fertility treatment, she was assuming that I was concerned about what my cleavage looks like. (In case you haven't guessed yet, this made me kind of angry.) To have made a decision about my treatment which meant that I could have unnecessary chemo was astounding to me.
Anyway, we could not make the decision until the HER2 results were in, so Dr S___ immediately stopped my consultation. She said she would chase the results but that I should consider that I may be going into surgery next week rather than chemo, as she predicted I would be HER2 negative (apparently my tumour is so receptive to oestrogen and it's rare that these types of cancers are also HER2 positive).
I then went into work rather light on my feet for the rest of the day! There is a chance I might not need chemo after all! Gosh, what a glimmer of hope.
Sadly, the glimmer was shortlived. She called around 6pm and said that I am HER2 positive and so should definitely have chemo first. Oh, and could I come back at 9.30 the next morning! So Tanai and I were back at St Bart's early this morning to get the full picture. Apparently only 10% of cancers are both HER2 positive and receptive to oestrogen, so I guess I'm rather rare. Not sure how I feel about that as I'd rather be in the statistically predictable group, but there it is. So this morning Dr S___ gave me the full low-down on chemo and I signed a consent form so that they can progress with my treatment.
She explained some of the main side effects, and some of the regular tests I'll be getting over the coming months, and why. Also, in true project manager style, I'd written down lots of questions in my blue notebook, each with a space left for the answers, so we went through those too. Tanai and I have been doing quite a bit of research: each time I get a letter with the results of the consultation we google all the acronyms and write down any questions we have, so that we can go through them in our next visit. I imagine this will become quite a routine during my treatment. So here is a bit of a summary.
I will need to have a few more tests to check certain parts of my body that can be affected by the chemo. So I have to have an 'echo' test which is to check my heart, because the drugs can impact on my heart. They will keep checking this every 3 months and if my 'ejection fraction' goes down by more than 10% they will either reduce the dosage or pause/stop treatment. I also need a CT scan and a full body bone scan. The drugs I will be on can affect my bones, my liver, my kidneys, my blood, in rare cases chemo can cause cancer (ah, the irony!), nerve damage and, to top it all, it will probably bring on early menopause. Thank goodness it will also nuke my breast cancer, otherwise this is a ridiculous thing to sign up to by choice.
The more 'regular' side effects are that I will feel nauseous (Dr S___ prescribed me some kick-arse anti-nausea medication), tired, I will be more susceptible to catching viruses, I will probably lose my hair and I will probably lose my sense of taste (this makes me very sad, but thankfully it's only during treatment, not forever). For my birthday, the wonderful Rosser family in Sydney bought Tanai and I 'high tea' at the Ritz, so I've decided to save this as my treat when I'm all done with chemo and get my taste buds back. It's great to have something wonderful like that to look forward to.
When I told her that I was planning to continue going to work all the way through my treatment she was very pleased. She said she encourages all her patients to continue working, and she said if I feel as though I have the energy, I should continue to cycle into work too! She advised that if I do want to take the tube, I should avoid the rush hour, as it's likely I will catch any germs going around.
So, once we were all done, I trotted off to get my bloods done, got my appointments booked in for my CT and bone scans, and headed into work.
All in all, I'm quite glad we're still doing it this way round. Having chemo first does mean that the surgery is likely to be less invasive, as the tumour will be smaller. Also it means I get to have Pertuzumab, which has only been licenced since December 2016 and has fantastic effects. It increases the effectiveness of the other drugs and dramatically reduces the chances of the cancer returning. But this drug is only available to patients having chemo before surgery, not afterwards, so I'm very lucky to be having this.
Tomorrow I'm going shopping with a couple of girlfriends to buy some headscarves, and we are going to work out how to tie them somewhat stylishly by studying youtube videos, as I really want to be prepared for this. Should be fun!
Friday, 31 March 2017
Finally, somewhat of a plan
This morning was results day, so Tanai and I arrived at St Bart's somewhat bleary-eyed after a late night (at a great Sampha gig) and broken sleep. I felt very calm and eager to find out what's what. So, here we go.
There's a lot of good news and I'm generally feeling very positive. I have a tough few months ahead but my inner project manager is kicking in, and soon I'll have a proper plan (complete with spreadsheets and gant charts, ha ha).
Thankfully, my left breast is fine, and the small lump in my right breast is benign, so the only cancer is the large lump in my right breast. It's a ductal carcinoma grade 3 (which means that it's a cancer in my milk ducts, looks different to normal breast cells and is fast-growing, or 'aggressive'). It's oestrogen receptive 7 and they're still waiting for the HER2 receptor results. This is relevant to deciding which drugs will be most effective to nuke the cancer.
I was expecting to have surgery first and then additional treatment, but my surgeon is advising me to have a course of chemotherapy first and then surgery. This is primarily because this cancer is likely to be receptive to chemo and hormone treatment, so it could be significantly reduced in size and may even be nuked completely by the drugs (although unlikely) so this is the best way round. They are making me an appointment with an oncologist for next week where I will discuss my chemo schedule, but it's likely that this will begin in a couple of weeks. They are also going to give me Pertuzumab which is a new drug only recently licenced, which is pretty cool. (I'm not used to being an 'early adopter' but why not start now!)
The general schedule for chemo is once every 3 weeks, for 6 rounds, which will pretty much take me through the summer (fun times!) and then some more tests and likely surgery in the autumn (September-ish). Hopefully the chemo will have shrunk the tumour to a teeny size so the surgery won't be too bad. When they remove the lump they will do more tests on it, and check my lymph nodes at the same time. Depending on the results of those tests (which will determine if it has spread) I may have to have a) more surgery, b) radiotherapy or c) nothing at all.
So, first things first. On the way home from the hospital Tanai and I stopped by St John's Bakery and got a couple of lemon cream-filled donuts to have with coffee as we digested the news. When life gives you lemons, eat delicious lemon cream-filled donuts!
My initial thoughts are very positive. It feels containable and treatable. It's also highly likely that I can continue to go to work while having chemo treatment, and with a combination of strategic allocation of my one day off a week, and timing of treatment, I could end up having minimum time off. It's likely that I would need to take a chunk of time off after surgery (eg 6 weeks) in the autumn but the doctors don't know for sure yet. And of course I don't know how my body will respond to the chemo so a degree of flexibility will have to be involved.
My surgeon, Miss L___, followed up her news about my results today with, "So of course, we will have to talk about fertility treatment..." I'd barely let her get the words out before I said "No we're not, we don't want kids!". She was a little taken aback. I suppose most childless women my age who are diagnosed have an initial response of "Will I still be able to have kids?", and they have various strategies to increase the possibility of future conception, such as egg harvesting. It's probably rare that someone is as blunt as I am, and blurts out that my only worry is that the hormone treatment interferes with my birth control and I accidentally end up pregnant! Poor Miss L___, my style is far too direct for her. I wonder if she will mellow a little over time.
Anyway, the news is still fresh, so I'm going to digest it today and have a low-key weekend working out what the practical next steps are. Buying wigs, etc. My style is to keep going, be honest about things but be positive and encourage people around me to be positive too, but I also need to develop a good way of assessing whether or not some days I'm better off staying at home and just letting myself have a Shit Day.
I'm not underestimating how huge this is, I know that chemo is a bastard and I've got a tough few months ahead, but I'd like to try to keep going as much as possible and I know that I have an amazingly supportive network of friends, family and colleagues around me. And of course Tanai is being awesome as ever. Now that we've eaten our yummy donuts he's gone off to work and I am going to enjoy the rest of my day off doing some Life Admin and trying to catch up on emails. I've had some lovely messages from people far and wide with really supportive and encouraging words. I will try to respond to everyone, but know that your positive thoughts are reaching me and giving me strength.
Cx
There's a lot of good news and I'm generally feeling very positive. I have a tough few months ahead but my inner project manager is kicking in, and soon I'll have a proper plan (complete with spreadsheets and gant charts, ha ha).
Thankfully, my left breast is fine, and the small lump in my right breast is benign, so the only cancer is the large lump in my right breast. It's a ductal carcinoma grade 3 (which means that it's a cancer in my milk ducts, looks different to normal breast cells and is fast-growing, or 'aggressive'). It's oestrogen receptive 7 and they're still waiting for the HER2 receptor results. This is relevant to deciding which drugs will be most effective to nuke the cancer.
I was expecting to have surgery first and then additional treatment, but my surgeon is advising me to have a course of chemotherapy first and then surgery. This is primarily because this cancer is likely to be receptive to chemo and hormone treatment, so it could be significantly reduced in size and may even be nuked completely by the drugs (although unlikely) so this is the best way round. They are making me an appointment with an oncologist for next week where I will discuss my chemo schedule, but it's likely that this will begin in a couple of weeks. They are also going to give me Pertuzumab which is a new drug only recently licenced, which is pretty cool. (I'm not used to being an 'early adopter' but why not start now!)
The general schedule for chemo is once every 3 weeks, for 6 rounds, which will pretty much take me through the summer (fun times!) and then some more tests and likely surgery in the autumn (September-ish). Hopefully the chemo will have shrunk the tumour to a teeny size so the surgery won't be too bad. When they remove the lump they will do more tests on it, and check my lymph nodes at the same time. Depending on the results of those tests (which will determine if it has spread) I may have to have a) more surgery, b) radiotherapy or c) nothing at all.
So, first things first. On the way home from the hospital Tanai and I stopped by St John's Bakery and got a couple of lemon cream-filled donuts to have with coffee as we digested the news. When life gives you lemons, eat delicious lemon cream-filled donuts!
My initial thoughts are very positive. It feels containable and treatable. It's also highly likely that I can continue to go to work while having chemo treatment, and with a combination of strategic allocation of my one day off a week, and timing of treatment, I could end up having minimum time off. It's likely that I would need to take a chunk of time off after surgery (eg 6 weeks) in the autumn but the doctors don't know for sure yet. And of course I don't know how my body will respond to the chemo so a degree of flexibility will have to be involved.
My surgeon, Miss L___, followed up her news about my results today with, "So of course, we will have to talk about fertility treatment..." I'd barely let her get the words out before I said "No we're not, we don't want kids!". She was a little taken aback. I suppose most childless women my age who are diagnosed have an initial response of "Will I still be able to have kids?", and they have various strategies to increase the possibility of future conception, such as egg harvesting. It's probably rare that someone is as blunt as I am, and blurts out that my only worry is that the hormone treatment interferes with my birth control and I accidentally end up pregnant! Poor Miss L___, my style is far too direct for her. I wonder if she will mellow a little over time.
Anyway, the news is still fresh, so I'm going to digest it today and have a low-key weekend working out what the practical next steps are. Buying wigs, etc. My style is to keep going, be honest about things but be positive and encourage people around me to be positive too, but I also need to develop a good way of assessing whether or not some days I'm better off staying at home and just letting myself have a Shit Day.
I'm not underestimating how huge this is, I know that chemo is a bastard and I've got a tough few months ahead, but I'd like to try to keep going as much as possible and I know that I have an amazingly supportive network of friends, family and colleagues around me. And of course Tanai is being awesome as ever. Now that we've eaten our yummy donuts he's gone off to work and I am going to enjoy the rest of my day off doing some Life Admin and trying to catch up on emails. I've had some lovely messages from people far and wide with really supportive and encouraging words. I will try to respond to everyone, but know that your positive thoughts are reaching me and giving me strength.
Cx
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