Forum Discussion
......And, we're back
Hi friends,
I was involved in the BCNA online discussion five years ago when I was diagnosed with DCIS. It helped me immeasurably, it was also just helpful to write down my thoughts and fears and have others respond. I was 38 at the time with 2 small boys and one baby girl. A harrowing time post mastectomy and navigating reconstruction with parenthood and work as a clinical psychologist.
In October just gone, I noticed a lump under my mastectomy scar tissue. I worried for a moment and then convinced myself it was just scar tissue. Then in December I had my yearly MRI/US/Mammo and lo and behold, I have cancer again. This time it is invasive. I feel so ripped off. So, I'm back here to say hello, that although I sound a bit cross, I have been relatively calm as I go from one appointment to the next. I am probably catastrophising a lot less this time. My PET scan suggested no evidence of it anywhere else however there was some activity on my ovaries (which have been suggested to be cysts) that are being investigated next week. I have had a lumpectomy last week. My surgeon reported he achieved clear margins however he is discussing with his team today about whether the margins are clear enough to not warrant further surgery. Further surgery means complete deconstruction of that breast again and this time a reconstruction would be complex because I would have no skin left. So, looking forward I am staring into 2020 with potential further surgeries, discussion about whether to remove the other breast, possible oophorectomy, radiation and hormone treatment and whatever else I might require. Hmmm, not what we had in mind for 2020. I'm not sure what I need. Perhaps a reminder that I can do this over again. It feels hard second time around, and scary because we thought we had it sorted. I am not sure if the landscape is even darker through a cancer lens but I look at the state of the world and for the first time in my life I'm really worried for my kids' future. While I am a professional who works in the mental health field and am pretty stable most of the time, I feel low and particularly uncertain about things ahead. Its not a good feeling. If anyone is reading this and has lost a loved one in the fires, or lost their property/business/livelihoods I send love and best wishes for recovery.
Thanks for reading
xx
I was involved in the BCNA online discussion five years ago when I was diagnosed with DCIS. It helped me immeasurably, it was also just helpful to write down my thoughts and fears and have others respond. I was 38 at the time with 2 small boys and one baby girl. A harrowing time post mastectomy and navigating reconstruction with parenthood and work as a clinical psychologist.
In October just gone, I noticed a lump under my mastectomy scar tissue. I worried for a moment and then convinced myself it was just scar tissue. Then in December I had my yearly MRI/US/Mammo and lo and behold, I have cancer again. This time it is invasive. I feel so ripped off. So, I'm back here to say hello, that although I sound a bit cross, I have been relatively calm as I go from one appointment to the next. I am probably catastrophising a lot less this time. My PET scan suggested no evidence of it anywhere else however there was some activity on my ovaries (which have been suggested to be cysts) that are being investigated next week. I have had a lumpectomy last week. My surgeon reported he achieved clear margins however he is discussing with his team today about whether the margins are clear enough to not warrant further surgery. Further surgery means complete deconstruction of that breast again and this time a reconstruction would be complex because I would have no skin left. So, looking forward I am staring into 2020 with potential further surgeries, discussion about whether to remove the other breast, possible oophorectomy, radiation and hormone treatment and whatever else I might require. Hmmm, not what we had in mind for 2020. I'm not sure what I need. Perhaps a reminder that I can do this over again. It feels hard second time around, and scary because we thought we had it sorted. I am not sure if the landscape is even darker through a cancer lens but I look at the state of the world and for the first time in my life I'm really worried for my kids' future. While I am a professional who works in the mental health field and am pretty stable most of the time, I feel low and particularly uncertain about things ahead. Its not a good feeling. If anyone is reading this and has lost a loved one in the fires, or lost their property/business/livelihoods I send love and best wishes for recovery.
Thanks for reading
xx
35 Replies
- Oh what a ride, @Tinks, I am wishing you all the best. Sorry you have had all of that to contend with. They have recommended soap free/unscented body wash and sorbolene cream. I hear moo goo is excellent except the chemist I went to didn’t have it. I think Priceline has it. I’ll let you know how they go. Take care, x
- That’s great news given what could have been happening! I start RT in two weeks, after chemo/ mastectomy/axillary clearance for stage 2b and one node. If you have the time I would be interested in what skin care you have been advised? Best xx
- Hi @Tinks - lovely to hear from you. I feel like I've come out the other side thankfully! Treatment path seems clearer now and I start radiation tomorrow. I have been on Tamoxifen for the past 3 weeks and so far the world hasn't caved in!! I am seeing a genetic counsellor soon which will inform any further preventative surgery however I do not have much of a history in my family. The medical oncologist suggested it would be a good idea given the cancer had returned. So that's where I am at. Thanks again for checking in, I hope all is well with you?? xx
- Hi @eightdays, I was wondering how you were going with all your really tough challenges and decisions since you last posted? Sending you lots of positive vibes. xx
- The gang is life saving! Thank you @shs14. @Anne65 thanks for the motivation. Much appreciated xx
- @eightdays I'm thinking of you and sending my white light and good thoughts too. Facing up to treatment again must be really hard. I can hear you building your mindset and strength though, and great that others can give you some inspiration for winning against this shitty disease again. I think if anyone understands its the gang here and so nice to see everyone dropping in to send you love.
- @eightdays Wishing you love & strength as you battle this disease again. Life certainly wasnt meant to be easy!! As you have read, many here have had a recurrence & gotten through & so CAN YOU!! Believe in yourself & the strength you found in your initial battle.You are more wiser this time & know what to expect so that's gotta help. We are all here for you. take care & keep strong. love & hugs xx
- Hi @melclarity, thanks so much for reaching out and congratulations on the 5 year mark. It gives me much hope. Yes, I do feel gutted but like you said, I guess it is just bad luck. I hope you are done with cancer for good now. It’s such a huge life interruption (to say the very least). Thanks again for the good news. It’s easy to feel alone and like you e done something wrong second time around. Much appreciated
xx - that’s so encouraging @PV123, thanks, it’s good to hear those stories! Xx
- @eightdays I just wanted to reach out and tell you...YOU absolutely can do this again. I've been through a recurrence at the 4yr mark and have now reached my 5 year anniversary this week. To say gutted for the 2nd diagnosis is an absolutely understatement, so I say vent away!!! I also did everything right they still dont know how its possible I had a recurrence, but I did in the scar tissue of the lumpectomy even after radiation and 4yrs on tamoxifen uuugh!!! I was LIVID!!! I sure did not know how on earth I was going to do it all again and yet I did..one step at time. Had I looked at the long road I would never have gotten through it.
I just posted in the main forum and I'm hoping that might help you in how you are going to get through it all. You can do it, so be super gentle with yourself. There is nothing you could have done to prevent it, as nor could I. Bad luck they said...yet they still carry on about diet and alcohol contributors...yeah I don't really drink and have a healthy diet. So certainly wasnt through my doing at all. They really don't know, they can only suggest the logical things to reduce.
Take a deep breath and one thing at a time.
Hugs M xo
