3 types of cancer, how do I not live in fear?
Delos
Member Posts: 21 ✭
I had Hodgkin's Lymphoma 23 years ago. Was successfully treated with radiation therapy +surgery. 10years later they confirmed I had what is now considered an overdose of radiation (standard amount at the time). It caused a chronic thyroid condition, and receding gums, half my teeth fell out... healthy teeth 
. 21 years after the radiation, I was diagnosed with invasive breast cancer and Padgets disease, both diseases in both breasts and both nipples, caused by the radiation therapy. (they NO LONGER administer such large doses, they are more educated in radiation therapy now). Chemo, full mastectomy, and tram flap reconstruction later, now on tamoxifen. I feel no anger that the radiation has had such lasting effects, I have lived, loved, become a parent and for the most part I have been healthy for decades. The doctors saved my life. But I fear recurrence, and mostly I fear more long term complications. I had the least amount of chemo possible and no more radiation as they now fear my heart may not stand too much more cancer treatments. I fear leukemia etc as my life has proven you CAN get secondary cancers from treatment. I live in limbo. If I have thrush... the docs send me for an internal ultrasound, if I have constipation...they order a colonoscopy, their caution keeps me in this world of fear.
I try not to be scared, but it is the first thing that enters my head every morning when I wake.
. 21 years after the radiation, I was diagnosed with invasive breast cancer and Padgets disease, both diseases in both breasts and both nipples, caused by the radiation therapy. (they NO LONGER administer such large doses, they are more educated in radiation therapy now). Chemo, full mastectomy, and tram flap reconstruction later, now on tamoxifen. I feel no anger that the radiation has had such lasting effects, I have lived, loved, become a parent and for the most part I have been healthy for decades. The doctors saved my life. But I fear recurrence, and mostly I fear more long term complications. I had the least amount of chemo possible and no more radiation as they now fear my heart may not stand too much more cancer treatments. I fear leukemia etc as my life has proven you CAN get secondary cancers from treatment. I live in limbo. If I have thrush... the docs send me for an internal ultrasound, if I have constipation...they order a colonoscopy, their caution keeps me in this world of fear. I try not to be scared, but it is the first thing that enters my head every morning when I wake.
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Comments
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Oh you poor thing Delos! I'm so sorry you have to live like this. Have you had some counselling? Maybe talking out your fears would help manage them. K xox1
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@Delos
Don't know what to say except we are here to help you through this! Can't imagine for one minute how you feel! The fear that you mention, living in limbo...….it was good to read that your Drs are being very careful and ordering tests to head off anything else and to put your at ease! Goodness it has been a long haul for you.
Not sure how long you have been part of the network and if you have taken advantage of the resources available.
Our @SoldierCrab has put this list together - I hope it helps you to understand where you are at and to get resources to help youBelow are a couple of links to help you find your way around the forum and also how to find a breast care nurse and how to order a MY journey Kit if you haven't got one yet.
It can be a whirlwind when we first get a diagnosed.... Breathe and take it one step at a time.
The what and how thread.
http://onlinenetwork.bcna.org.au/discussion/14879/the-what-and-how-thread/p1
Breast Care Nurses
https://www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx
My Journey Kits and other resources.
https://www.bcna.org.au/resources/
BCNA Helpline 1800 500 258
If you have any questions, concerns or require any further information or support please call 1800 500 258. The Helpline is open Monday, Wednesday and Friday from 9 am till 5 pm EST and Tuesday and Thursday from 9 am till 9 pm EST.
How to understand your pathology reports
This link you can click on the type that matches your diagnosis and hopefully gives you a better understanding and helps with questions or to formulate questions for your next visit
https://www.bcna.org.au/understanding-breast-cancer/types-of-breast-cancer/
Take care
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Thank you
XxX
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I don't know what to say except that my thoughts are with you and I'm glad your doctor is taking care of you.1
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Kmakm
I do not think that there are many councillers who have had two cancers caused by the treatment for another, I really think it's only fellow survivors who could possibly understand the day to day fear of having that history.
This is why I am reaching out through this site.0 -
No worries Delos. I meant that a psychologist might be able to give you strategies to manage your fear. All the best. K xox1
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@Delos It's very sobering to hear from someone who has had the misfortune to be the exception that gets the really nasty repercussions from treatment. As you say, there is no point in being angry, but it is not surprising that you've lost your confidence.
Im not in your situation but I've had recurrent breast cancer, so understand that feeling that it won't go away and leave you alone. I struggle with it, then have good days, then bad days. The tests thing is intersting, isn't it ?The things you are concerned about personally are often dismissed, but there seems to be a bizarre enthusiasm for shoving tubes and cameras where you really don't want them.
Many of us struggle with side effects and the constant worry things will get worse. That doesn't help, I know, but please know you are not alone. Mxx1 -
Yeah, the way the doctors react is scary, the tests are a double edged sword, you applaud their vigilance and caution, but it rocks your confidence, fear and doubt creep back in, you were going OK, next thing you know you are on a table with monitors and tears.1
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You're a high risk individual which, bugger it, makes you high maintenance. It's exhausting and hugely expensive in many ways apart from the monetary. I got a bit tired of the cry wolf business and opted out of all screening for nearly a decade. When my cancer came back, I could feel it, but no one else could find it until it came through my skin. Go figure. Lobular BC is a sneaky bastard. Now, I don't know what to allow. Got rid of all the disposable bits, top and bottom, totally poisoned and zapped. What else can we do?1
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Yeah, i knew I was 'not right' before both diagnosis' too. For months.
I have to keep reminding myself of this.
To stay confident and trust my own instincts.
But at 2am, when you are alone in your own head, it's difficult.
I opted out of the colonoscopy as a simple change in diet got rid of the symptoms, I think I was just easily led into that worse case scenario head space.
But that high risk factor plays heavily on my mind, I was mammogram scanned regularly from age 40, all clear for 3 years, then... BAM! Both breasts, multiple lumps, both nipples with Padgets. It was so much at once.
When I had my mastectomy and immediate reconstruction, they were not expecting my core muscles to have so much radiation damage(from the treatment 20 years earlier) , they were shocked! I was called 'The Radiation Girl' as they removed radiated material, and replaced it with other radiated material.
I am grateful they did, as I do not think I would have coped waking up from surgery to find the reconstruction had not happened,
but at 2 am this morning, I woke in a panic, wondering what cancer may suddenly appear in that relocated core muscle. There are no stats on this stuff. I just have to try to put it out of my mind. No mammory glands means no mammogram.
But you are right, what else can we do?
I just gotta trust the doctors and hope the tamoxifen is low impact/high success.0 -
Hello @Delos sending you a private message1
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@Delos all I can offer is support and hugs xox1
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Spoke to a different oncologist at my last checkup, he has put me in contact with a councillor at the hospital who has years of experience with people with multiple cancers. Apparently the other oncologist assumed I had had councilling after my first cancer diagnosis, 20+ years ago.
No.
Back then I was not offered any help or support. (my how things have changed! ).
I guess that's why I am a bit resistant to try this now, I have survived this long on my own.
My oncologist suggested that I may stay on tamoxifen my whole life as I am such a high risk of recurrence, so I will go to the councilling appointment with an open heart and mind. Sick of living in fear that's for sure, and it seems I will to live with this huge threat of recurrance for ever.
Thank you all again. XxX1
