Warning photos attached may be confronting - Is this what your radiation looked like?
I am 10 days post radiation, I had 25 treatments. I have been using MooGoo and Mepilex Lite as supplied by the oncology radiation nurses. MooGoo burns when it goes on and Mepilex sucks all the moisture out of my wounds and takes the new skin with it along with the slough. Am I being a sook? I am in a lot of discomfort and I’m having trouble sleeping,
Sentinel lymph nodes removed - Chemo & Radiation treatment
I have my first appointment with Oncologist next week and I'm writing down any questions that pop into my hear and seeking useful tips from others who can offer suggestions for what helped during day of treatment and what to have at home to help get through the not so good days please.
Tips for Chemo and Radiation
Last year going through chemo I wrote down things which helped as I went through treatment to share with three friends coming behind me. Some is advice I got from other patients, some from doctors, some from nurses, some from online. Now I'm out the other side I've been meaning to post it here in case it can help someone else. If you are starting chemo just know you will get through it and its often not as terrible as you think it might be. Stay positive, moan when you want to, it will end eventually! Also I would love it if anyone has their own tips to add. (I recognise these are specific to me and may not be right for everyone.) CHEMO 1. Walk everyday. Try for at least half an hour a day. Try and make someone you love come with you. I found it so good for limiting side effects, it is my number one tip! And becoming recognised by cancer researchers around the world. Watch the Catalyst special on ABC. Its good for the anxious brain, good for your emotional and physical health and if you can debrief with someone as you walk even better. Walk everyday, even chemo days. You will feel like a warrior! 2. Get a port. You can try without but if you are having 16 infusions like me you will be glad you did it, and your nurses will love you. And get it before you start chemo. It hurts the first day it goes in but gets better quite quickly. 3. Use Emla patches on your port before chemo. They numb the site. I just asked for them from the nurses each week. Set a reminder to put it on one hour before. The only week I forgot they placed the needle three times before it worked, yikes! I use them for Herceptin injections too. 4. If your port doesn’t work try stretching your neck up and coughing to get it going or raising your opposite arm. Nurse tips. 5. If you get a Neulasta injection for after AC take Claratyne for a couple of days with it as it is meant to stop related bone pain. 6. Either AC chemo or Neulasta gives you constipation . Be proactive. Take Coloxyl with senna on the day you get your infusion and until you poo. 7. Hair falls out from 14 days on. Mine fell out about day 21. Get someone to shave it when it looks bad. Have a shower, let the water run on your head, that first feeling of water on your bald head is quite amazing! Have some scarves and hats and beanies ready and even a wig. Go to the wig libary beforehand. I won't lie, losing your hair is pretty hard at first but you get used to it quickly and after a while you just own it and put on a brave face. I got more compliments on my scarves and now with my short hair than I did before! 8. Go to a Look Good Feel Better session. Free makeup and great advice and meet other people going through the same shit. And they teach you how to rock a headscarf. 9. Do Cold Therapy if doing Paclitaxel. Look up my post on the forum. Latex gloves and a bucket of ice for hands and Natracure socks for feet. This can save you having Peripheral Neuropathy and losing your nails. 10. Check with your onco but limit steroids, ie taper sooner if having bad side effects and your nausea is controlled. I am sensitive to that sort of thing and was much better with a lower dose. 11. Suck ice during chemo to stop mouth ulcers. I didn’t do this but had it recommended. If you get ulcers rinse mouth with salt water, I bought Peter Mac (hospital) brand sachets on Ebay. Easy to use, nice taste. 12. Acid throat and chalky mouth is bad in AC. Use Gaviscon dual action tablets, try staying upright. 13. Your skin will go bad and then improve. But it turns over so much slower so look after it. Use a drop of rosehip oil in your moisturiser (another BC friend tip) and do your hands and face every day. Sores heal slowly so be careful with them. 14. Some of your small moles will drop off? Some will go a bit weird. Your skin closes up. 15. Watery sore eyes and nose will come and go. Eyedrops if eyes get sore. I use antihistamine drops. Carry tissues! 16. Bloody scabby nose. One of my worst side effects, very bad in Paclitaxel. Can try putting a bit of pawpaw up there. Goes away quite quickly when you finish! 17. AC is hard, go dose dense and get it over with in 8 weeks. Paclitaxel is easier but going every week is not, its exhausting having to turn up 12 weeks in a row. You will be very tired by the end but the moment you stop things start to improve! About day ten afterwards you will feel a change. Your energy will come back quickly! 18. The eyelashes and eyebrows you hung on to will fall out after you finish Paclitaxel. Boo! Not fair. 19. Your hair will come back even if it doesn't seem like it ever will. Six weeks is the moment it really starts happening. RADIATION 20. Radiation is a breeze compared to chemo. No needles, no poison! Once you get used to making small talk with the nurses while lying with your boobs out you’re good. :smile: Make friends with the people before and after you. You are on the downhill stretch! 21. Strataxrt cream. I was lucky enough to get a sample pack of this from my rad/onco. I have nothing to compare it too but everyone was impressed with my skin and minimal reaction. But its very expensive, ask your onc if they have some free stuff. For 20 days of radiation about a 50ml tube would do. 22. After radiation I still have a slight tanned area and my whole breast and nipple peeled afterwards. Ow! Radiation is good for your lumpectomy scar though. Lightens it! And you won’t have to shave that armpit afterwards! LIFE 23. Tell people how you’re going even if they don’t ask. Love on those people that stay the distance. Cancer is such a scary thing for everyone and some people don’t know how to talk to you. Make it easier on them. 24. Come to BCNA if you need help. So many nice people here willing to share. 25. As my Mum used to say, Time and the hour run through the roughest day. You will get to the other side. Be gentle on yourself. Be distracted. Nice things will still happen in among the shitty bits. You are brave, you are amazing, be kind to yourself xxx <3
Help on mepitel film
Hello lovely ladies 🙂. I was wondering if someone could give me some info about Mepitel film. My oncologist said she doesn’t usually use it and they didn’t have any, so I ordered it myself. I got 10x7.5cm films. Today was my first session, and when I pulled the films out, the other onco and his helper didn’t have a clue what I was talking about. They thought it was a dressing. He said in 25 yrs experience he’d never heard of it. The nurse put the 4 films on me and I got the radiation, but afterwards they told me to take it off so I could apply the cream. I mentioned that I’d read that it usually stays on throughout treatment, but they thought it was strange as the cream wouldn’t be able to get to the skin. So my question is what do I do now?? Do I keep the film on and apply cream over the top? Do I take it off as they said and reapply it every day? Also are the dimensions correct? I used 4 pieces and it’s very expensive, so not much stock in Aus at the moment. If I leave it on, how do I apply the cream? How much of my chest area is it supposed to cover? I’m having both breasts irradiated. Also someone mentioned needing to readjust the settings on the machine? I’m very confused 😳. Any help would be appreciated. Mon Xx
Newly Diagnosed 18/2/2020
Hi Everyone, my name is Lois and my life got bit of a shock last week when the doctor said "It is Aggressive, Invasive Breast Cancer". The emotions went into hyper drive and I left his room and promptly threw up in his garden. Luckily, my husband was there for that much needed clean up and cuddle. My "Lump" had been there for over 5 months and as I have Lupus, merely thought it was a torn chest muscle that was taking forever to heal. Unfortunately it wasn't. Instead it is a Stage 1, Grade 3 estrogen receptor cancer (I think that is what they said!!) located in the upper quadrant of my left breast on my chest wall. The lump is nearly 30 mm... Yesterday, I met with the Specialist for the first time and my Breast Care Nurse - both very calm, methodical, easy to approach and allowed me for the first time in nearly 3 weeks to let my breath out and come home with a positive outlook - even though I know the months ahead will shake, rattle and roll me to exhaustion and beyond. At the moment, the decision is to take out the lump and relevant lymph nodes then radiation therapy. The view to full removal of both breasts will be considered once I have done healing....especially as "we" are unsure how the Lupus will react as I have been in constant flare up with a myriad of symptoms for nearly a year now. The whole thing of rejection of breast tissue for reconstruction etc needs to be considered at length and with advisement of specialists. I am alternating between being scared and rationally calm. The hardest bit of this news, was having to tell my children and watch the sheer horror cross their faces. That took my breath away. So...that is me. Trying to find a sense of positivity amongst the fear and monumental freak out sessions since I was told the news.
Radiation - my experience
Hi Everyone, I finished 25 sessions of radiation on the 3rd Jan 2019 and thought I would write about my experience of the whole process. It will be a long post, so get a cup of tea ready :) Going in to this I was not sure how I would go with rads as I was really concerned about two things: 1 - the out of pocket costs and 2 - being semi-naked on the table (yes, I know this is a bit of a weird one to be worried about). Out of pocket costs: I advised my medical oncologist that I might ask him for a referral to a public hospital as I was not sure if I could afford the private out of pocket costs for radiation. He suggested that I meet with the radiation centre and find out about costs first and then decide, I was happy to do this as I felt really comfortable at this hospital. The radiation planning meeting involves three meetings - nursing, positioning and finance meetings, so I requested that I have the finance meeting first as I didn't want to go through the process unless I knew I could afford it. The total cost for radiation was just under $20 000, however I was put on a payment plan so I did not have to pay anything up front. My total out of pocket expenses for the 25 treatments was $2000.00, and I was able to pay this in weekly instalments via direct debit. The radiation centre at the hospital handled all medicare transactions. I was really happy with the arrangement. From this experience, I learnt that it is worth mentioning up-front if cost is an issue, it seems to me that there is some flexibility around how you pay and maybe even the amount you pay (not sure though). I guess at the end of the day it is a business and we are the customers (that don't want to be customers!) so our business is important to them. At the nursing meeting, I was given a gown to use and keep and I also received a 'goody bag' of creams, soap and sunscreen and while I understand that the gown is most likely their way of reducing laundry costs, it did make me feel special. Mepitel was used on me for the duration of treatment and is still on me as I type this out. I am to keep it on for two weeks. I have a small amount of redness outside of the the mepitel area. How I dealt with the 'semi-naked on the table' bit: I get that this is not a big deal for others, however for me, this was almost a deal breaker - the idea of lying on the table with no top on, all the bright lights on me and knowing that the image is projected on screens outside the room just makes me feel kind of sick, I really did not think I would go through with it. Just writing about it makes me feel uncomfortable. So, I purchased 'baby blankets' from K Mart for $10. I took one to the planning meeting to test out the reaction I would get. I covered myself up with it and asked them to only move it when necessary - and they did! I took my blanket to every session after that and felt a bit better about the whole thing. At each session I had my blanket on me and they only moved it around to confirm my positioning was correct and then I was covered for the duration of the actual radiation. I still hated the situation, but I got through it. There was one radiation therapist that seemed to leave me uncovered unnecessarily, but I didn't have her very often. I just made a point of covering myself when she did this, which of course is a bit naughty as you are supposed to keep your arms up. The other great thing was that I was able to request only female therapists and this wish was granted as well. I also refused to have my face in any of my planning photos, it just meant that I had to say my name etc each time. The take away from all of this is ask and be your own advocate, if something makes you feel uncomfortable speak up. The people treating us have probably never been through this and don't understand how vulnerable one can feel. I hope that this long-winded post can help someone else who is about to go through radiation. Next step for me...tamoxifen Hugs to all of you wonderful ladies and guys on this forum
Early stage breast cancer #4 (recurrence #3)
Hi everyone, reaching out to find anyone in a similar boat which I call the SS "Lucky/Unlucky". I have been dealing with early stage BC for 18 years now since an initial DCIS dx in 2001 (1mm in size - picked up on my first ever mammogram at age 37) - had all the recommended treatment (lumpectomy x 2 for clear margins and then rads). Since then I have 3 more re-occurrences - 2004 (1.5 mm, low grade, mastectomy no reconstruction), 2011 (in chest wall scar - lumpectomy and then 6 years of Armidex) and now late 2018 a 2nd chest wall recurrence. Tumour is ER positive, PR negative, HER negative, grade 2, Ki-67 25-30% (high - although my new Oncologist suggests that Ki-67 is 'the least reliable' prognostic indicator. UNLUCKY!!! Have never had any lymph node involvement or mets. LUCKY!! Have had chest wall reconstruction surgery 3 weeks ago using a flap from my thigh - went very well with clear margins etc. Differing opinions from the experts now about next steps. Advised I should consider radiation (second time around as I had it in 2001 for DCIS), although have been warned about potential heart issues and chronic skin and bone problems. Have been told chemo is also something I should consider. I asked about the Oncotype DX test and was initially told it was not suitable for someone like myself for prognosis or treatment planning, but when I said I was planning to get it done anyway, it was suggested it COULD be used to work out if I would benefit from chemo or not. Signed up for the test yesterday. Best $5K I have ever spent - either way. But I am very aware that not everyone can afford this and think it is a great shame that Australia is one of the few developed nations that does not support the cost of this via government medical programs (Medicare) or private heath insurance. Will get the results week after next. I clearly have something odd (lucky/unlucky) going on with my tumour type, and if I have to have chemo even though there is no node or lymphatic invasion so be it. I have never posted before because I don't want to frighten anyone with my sad story about recurrences - but equally, I figure now I am in some way a good story of how early detection, ongoing monitoring etc. has kept me going until now and hopefully for many more years to come. I am back on Arimidex and my new Oncologist has indicated that I may need to stay on this forever - no worries!! Have pretty much decided not to do radiation a second time as it seems quite dicey in terms of risks and rewards. Anyone have any experience they want to share. Love and best wishes to all on this forum. Cheers MvB
5 day radiotherapy treatment
I have recently been diagnosed with low grade early stage estrogen positive breast cancer. I have had a lumpectomy and the margins and 4 nodes removed were clear. I have been offered the standard 3 week radiotherapy treatment or a 5 day targeted radiotherapy treatment which only delivers the radiation to the area of the lesion. Has anyone had this 5 day radiotherapy treatment?Newbie - not the 2024 I was hoping for!
I was diagnosed just before Christmas 2023 with invasive lobular cancer - a journey that just keeps unfolding. Initial diagnosis scans showed the ILC was 3.3 cm, then MRI 6 cm and the pathology results ended up at 7 cm and another 1 cm LCIS spot in a totally different area. I had two surgeries- a mastectomy and a positive sentinel node, followed with an axilla clearance. I have some cording post surgery which physio is working on. Next week, I start chemo (AC and then Pacilitaxel) followed by radiation and then endocrine treatment. Not what I was hoping for the year I turn the big 5-0. I really appreciate reading other’s experiences, and the Q&As available here.
