Forum Discussion
cactusk
2 years agoMember
Here we (I) go
Diagnosed ductal last week - lumpectomy tomorrow.
feeling sad but relieved & nervous & a bit scared. Likely radio or hormone therapy after - we’ll see.
reading these threads I know I’m not alone, even though I’m by myself right now.
onward , right?
feeling sad but relieved & nervous & a bit scared. Likely radio or hormone therapy after - we’ll see.
reading these threads I know I’m not alone, even though I’m by myself right now.
onward , right?
51 Replies
- iserbrownMember@cactusk
Best wishes with your ongoing treatment.
I have a sister that was on Melatonin, initially the dosage wasn't working so the GP wrote a script for the Pharmacist to compound the Melatonin. Once she'd been on it for abt 3 months she was much better at sleeping and eventually weaned off!
As to Zoladex, I had the Zoladex injections, one every 4 weeks x 26 (2 years). Fortunately, my Oncologist passed it onto my GP to administer. The trick is to keep it to the day, every 4 weeks. I didn't have any side effects, so I hope you are the same. It was an injection in the abdomen area, left side and right side the following month. Left side sometimes I felt a little uncomfortable. As a result, the ovaries shrunk, and the need is no longer! GP always used a numbing spray first!
Hope you find the treatment path that suits and yes have all your meds checked to ensure that one or more isn't causing problems!
Take care - arpieMember@cactusk
Hopefully you can find other means to control that doesn't cause bad interaction with the other meds you are on.
Maybe get your current prescribed med 'audited' by a pharmacist - they will be able to tell you if they contraindications with them ... (message sent) - cactuskMemberLatest update:
I attended the menopause clinic yesterday. Here I was hoping for some amazing suite of options, but alas, more medication.
Given the symptoms I'm feeling now are going to go into hyper mode when I start the Zoladex, what I'm feeling now is only the beginning.
I tried one of the tablets last night - gabapentin - but i didn't find it to be good for me.
Unfortunately I'm already on an SSRI so the option to take a low dose there isn't available to me.
I will try for a few nights, but in the meantime I'm going to speak to my GP about melatonin for sleep, I'll just deal with the hot flushes, and see if turmeric will work for at least easing joint pain.
I have an endocrinologist already (for my thyroid management) so when I next see my med onc I'll discuss with her if he could have some options.
I"m just really reluctant to take more medications if I can find something else that works.
I know that post rad onc I'll be on a cocktail of 4 medications, so with the 2 I'm already on, it's just starting to scare me.
But, day at a time right?
Harumph. - cactuskMemberThanks @cranky_granny
it is weird how much things can change. I was explaining to the radiology technician today my thyroid cancer treatment. It too was radio - more nuclear medicine, but involved me ingesting a radioactive isotope (I131) and waiting until I wasn’t radioactive to leave my lead room in hospital. It was back in 1997 - but she’d not heard of that as a treatment.I have learnt so much from this network - went out & stocked up on QV soap & moisturiser today.
the nurse practitioner asked me to tell her what I learn from the menopause clinic too.As much as this is a club no-one wants to join, the care, wisdom, experience & love that comes from these forums is so SO important to me right now. It helps me in getting through this, and I know I’m only at the start of my journey.
i appreciate every comment and check in every day.
Kelly x - cranky_grannyMember@cactusk I did the DIBH. I still have my snorkel though I had 25 rounds. I uses to count in my the breath in and hold now breath normally and i still remember it was 9 times each session. I also got to choice of music. I didn’t get any burn prevention but it was back in 2017. I went into everything a bit blindsided to it all. I know a lot more now its called hindsight. 1 funny thing was i used to have the hiccups after the session was finished. They didn’t start straight away. The rad oncologist brushed it off as nothing to do with the treatment he didn't even check how my skin was holding up it was the girls setting me up each time who spotted the blisters and called the head nurse in. That was the only bad experience in that part of my initial treatment. Had to deal with him 3 years later and he was just as dismissive so I dismissed him and requested someone else. Turned out he was wrong when i saw the new one she spotted the problem immediately. Its great that we have that choice even going public.I wish i could have practiced the breathing part before I started rads.Just remember moisturise heaps no powder no deodorant. Im sure they will have told you all that and gentle wash. I remember they were very particular about what moisturiser i used etc. they actually gave me tube after tube of it
good luck with it the 12 sessions will pass quickly - arpieMemberIt makes SUCH a difference if you have a 'caring team' backing you up, @cactusk - My Onc, Rad Onc & Surgeon were all fantastic in this area, as were the Onc team giving the rads.
I found the rads to be the 'easiest' of all the treatments & was lucky not to burn/scar .... so it is very important if you notice extreme redness at any stage of your treatment, or peeling skin etc - let the team know xx
I like the Pinball Machine analogy! ;)
take care & all the best xx - cactuskMemberOK. Radiation treatment will begin on Monday 29th January.
DIBH - deep inspiration breath hold, and no tattoos!
The team are SO lovely - everyone i've met at all 3 hospitals i've been to so far have been incredibly kind and understanding and patient. It really does make a difference to how I feel.
Maria, the receptionist at the rad onc building at RPA this morning reminded me again 'take it a day at a time Kelly'.
I think of it now as more of a pinball machine than a roller coaster. Some times on a roller coaster you squeal with glee and excitement, whereas on a pinball machine there are rounds of crazy activity, then moments of pause, where you just have to wait and be still, before the next craziness begins. I'm trying to learn to live with my pinball machine, not like it, but accept that it's here for some time. - cactuskMemberThanks @Abbydog
I'll be doing rads publicly - thankfully - as going private for my diagnosis and surgery has been expensive, but I"m incredibly grateful and lucky to be able to have gone that way, with surgery happening so quickly. I have chronic anxiety so the waiting is the worst for me.
My rad onc has suggested Strata XRT instead of Mepitel. It's a gel that apparently does the same thing but is easier to use (applied twice a day).
I also have a consult next week at the Menopause Clinic at RNS hospital. I'm keen to see what they can offer in terms of side effects once I'm on Zoladex and the other combination of endocrine therapy.
My measure up / CT is Thursday, then rads will begin a couple of weeks after that.
More waiting, but this time i'm hoping it will be easier to handle as I know what's at the end of it.
Appreciate your comment - thanks Abbydog,
Kelly - AbbydogMemberDear cactusk,
You've had great news, not needing Chemo.
That should be a great relief. Although there is still a great rollercoaster of emotions.
Radiotherapy was the easiest of my therapies, but everyone is different.
I was lucky to not be fatigued and I did not burn.
Ask where you are going for R/T if they use Mepitel to cover the R/T site.
My hospital provided it. It saved trying to find a miracle cream to apply.
When Mepitel is applied, it is on 24/7 and until it falls off 1-2 weeks after R/T
Also make sure you find out what cost is involved in your R/T
It is generally not covered by Private Health insurance.
I was told I could be out of pocket after Medicare, $2,000-$3,000 if done privately.
My Private Onc referred me to the Public system and it cost nothing. Treatment was very good.
Sometimes I have heard that the Private R/T, can sometimes be negotiated to a lesser fee.
Wishing you all the best with your R/T experience. - arpieMemberTake care @cactusk ... it really is like a treadmill at the beginning.
Try and take each day as it comes & just "stay in the 'present' " .... try not to get ahead of yourself with the 'what ifs' as they may not even happen xx
All the best for tomorrow's appointment xx