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
Newbie
Hi, I'm Barbara. I started my BC journey on 7th May. I had a lumpectomy for the removal of 44mm lump with 5 satellites on 4th June and then a further anxcillery clearance on 16th June. 9 of 15 lymph nodes were cancerous. Have started the chemo journey and I will finish off December or January with Radiation therapy. I had a clear mammogram in March 2019. By May 2020 I had a fast growing cancer that had spread to my lymph nodes. I am reasonably healthy and being over 50 do all the right health checks. There is no BC in my family. I never saw this coming, but yet here I am. My prognosis is good as my pet scan has shown no further cancer. I am lucky and appreciate my life all the more. But I do have issues around talking about BC so this is why I am reaching out to you beautiful people who understand how difficult, lonely and devastating this disease is, made worse by Covid. Anyway best wishes to everyone 💕
5 months since diagnosis
Hi, I have posted a bit of my story here but thought I'd post a more complete summary here for posterity. I turned 50 in Jan24 and moved from Melbourne to Adelaide in Mar24. Shortly after arriving I got a letter from BreastscreenSA offering free screening and basically ignored it, Then I started a new job in Aug24 and there are BreastscreenSA flyers on the doors in the ladies' loo and those faces kept looking at me everyday so in Nov24 I buckled and book in for a screen in my lunchbreak. I was in and out in 10 minutes, it was a little uncomfortable but not painful. I thought nothing more of it until I got a call 3 weeks later saying after reviewing the images a spot had been noted and I should come in for enhanced imaging, ultra-sound and based on the outcome of those, possibly a biopsy. The appointment was booked in for 2 weeks later. I didn't tell anyone, partner included, and tried not to think about it. I was in the 'its probably nothing' phase. At the appointment I was shown the original mammogram images pointing out the bright spot in my right breast they thought looked suspect. It was small, quite high up and at the back away from the nipple. I had the 3D mammogram and based on that they went ahead with an ultra-sound. They showed me the same spot on the ultra-sound and recommended a biopsy. I went ahead. I had no choice at that point to tell my other half as I came out with a wedge shaped bruise and dressing on my boob I was not going to be able to explain away. I should also say that being a normally healthy person I hadn't bothered registering with a GP since relocating so I had to call around and settle for the only place that was accepting new patients and could do an appointment the next day. 4 days after the biopsy and 9 days before christmas, I went back to the BreastScreenSA assessment centre for my results. It wasn't good news, I had a ~6mm, Grade 2 IDC ER/PR + HER2 -, and very dense breast tissue. The nurse called the GP on my behalf to make an appointment for the next day for a referral for surgery. I was referred to the RAH and had my first appointment with the surgeon and met with the Breast Care nurse just under 2 weeks later, this was 30Dec. The surgeon talked me though the treatment plan. It was to be a lumpectomy with a sentinel node biopsy followed by a course of radiation therapy rounded out with 5 years on Tamoxifen. No chemo required. I'm sure I should have asked more questions about the treatment plan, but to be honest I was so relieved I wouldn't need chemo and he wasn't suggesting a mastectomy I just accepted what he was telling me. I had another ultrasound and they placed a carbon track for the surgeon to follow. I was also booked in for an MRI due to the density of my breast tissue to check for anything the mammogram and ultrasound may have missed. That happened 2 weeks later and thankfully I didn't have to wait long for the results, 2 days later I was told there was nothing else identified on the MRI so we would proceed with the treatment plan which meant surgery 2 weeks later on 30Jan. I had the surgery on the Thursday, up to this point I hadn't really been too emotional or anxious. I was taking each day as it came and going by the 'it is what it is' principle so I wasn't overthinking it. My partner was also determined not to let me give into anxiety and worry, we are both of the British stiff upper lip type, we rarely get over-emotional and the approach worked well. Until I walked into the operating theatre, lay on the bed and burst into tears! It just all became very real and I started sobbing, they asked me to confirm the procedure they were going to be doing, which I did, then all I remember is the nurse holding my hand telling me they would take good care of me and me blubbing 'I know'. Then I woke up in recovery and started crying again, this time with relief. I was in the hospital overnight, I had very little pain - probably due to the pain killers, and I was discharged the next morning. I was given a prescription for some strong painkillers but I didn't need them, I was able to manage with just paracetamol. I was back at work on the Tuesday. I only told 2 of my closest colleagues about my diagnosis, one I sit opposite so I felt it only fair to explain why I might seem 'a little distracted' and was having so many medical appointments. The other is a friend. The only issues I had in the days following surgery was difficulty sleeping as I had to sleep on my back rather than my side/front which I prefer and some swelling which turned out to be a seroma that was drained when the dressing was removed. The special little pillow I was given by the BC nurse was helpful for sleeping a little more comfortably too. I had my post-op follow-up 10 days after surgery and got the news that they had removed a 9mm tumor with clear margins and the lymph nodes were also clear, so no further surgery required. The dressing and stitches were removed and the seroma drained. I was given a prescription for Tamoxifen then too, with instructions to start them sometime after the radiation therapy was finished. Then it was all quiet after that for a few weeks, I was left to heal and I was feeling pretty good, I still had numbness in my underarm area but the swelling was coming down and the bruising fading. 5 weeks after surgery I had my first appointment with the radiation oncologist who explained I would be having 15 fractions over 3 weeks. The planning CT was scheduled the following week, I had my little tattoos and treatment started 2 weeks after that. Call me weird, but I actually rather enjoyed the daily ritual of going to the hospital for my little 10 minute lie down. I might have felt differently if it hadn't been so convenient. I can get to the hospital from home in less than 40 minutes and it is only 10 minutes from where I work, so travelling wasn't an issue and I was able to have the sessions scheduled either before work or during my lunch break. I had very few side effects from the radiation, the only one of note being my nipple itched like crazy, I used the sorbalene I was given and the nurse gave me some silicone dressings that really helped, anti-histamine worked wonders when the itchiness was at its worst. My only other side-effect from treatment so far is a little bit of cording in my right arm which is being managed with massage and exercise through a lymphoedema physio. That brings me right up to the present. The only visible signs are a single scar about 6cm long in the crease of my right breast just below my underarm that is smoothing out and fading nicely, and some residual discolouration from the radiation that is also fading. Yesterday I went to the pharmacy to fill the tamoxifen prescription and took the first tablet this morning. My next appointment is in early August. I'll post more if/when side effects of the tamoxifen kick-in. This the phase of treatment I have been most worried about. I feel well and would rather just leave the whole thing behind me. But I know I can't do that. It was dumb luck that I went for that first mammogram when I did, that the BC was picked up when it was, and was able to be treated to simply. I feel very lucky to have come this far with so little disruption to my life, knowing it could easily have been so much worse. This was a very long post so thank you for persevering if you are still reading, and thank you to all that post, reply and like the posts on this forum. I've read so many stories that just reinforce the gratitude I feel for the support that is their for us all as we travel this journey.
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
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.
Fully cooked!
Well that's it 6 wks of radiation done. I'm officially fully cooked, must admit it was bittersweet since I have to go there every day anyway but I did get lots of high 5s from my patients today. My Rad Onc also organized a morning tea using her winnings from the World Cup sweep that I organized. Nurses put a new dressing on my collarbone as its gonna break down and go moist but that was a mistake as I was allergic to it and it pretty much peeled my skin off...ouch. tomorrow I'm off to beautiful Freycinet for a conference where I'm presenting about my "journey on the other side" and i have mentioned this forum as 1 of the things that has helped me, so thank you ladies. I admit I'm not a big poster but I check in from time to time and if there are ever any radiation related questions I'm always happy to help. XxStarted Radiation 'boost' today
Hello everyone! Today I'm on my final wk of Radiation. The boost as we call it. And I must say I'm so happy not to have to hold my damn breath for this 1!!! Most of you know I'm a radiation therapist so I know the ins and out of this treatment but I admit I found the holding my breathe very difficult and anxious, and I apologise to anyone else who has to do it! I have some feedback for my department so hopefully we can tweak it and make it less stressful. In other news my skin is starting to break down in the expected places, (collarbone, armpit a d under my breast). I hope everyone is travelling ok with their treatment xxFinished at last! Kind of...
I finished Radiation on Monday! I'm clear of active treatment at last!!! I still have six months of Herceptin injections, but my intensive treatment has finished after eight months! I found my lump in April and since then I've survived Lumpectomy, portacath insertion, AC Chemo for 8 weeks, Paclitaxel for 12 weeks, portacath removal and then four weeks radiation! I now have no new doctors appointments until the New Year, 2020! How strange that seems, quite surreal and I'm not quite sure how to feel about it all yet. In fact I'm sort of relieved I still have Herceptin continuing on so I don't feel an abrupt finish to working so hard to rid my body of cancer! How mixed up is that lol. I'm slowly feeling my way into survivorship. Any hints welcome. I feel a bit unsettled and my sleep is bad again! I talked to my doc about some counselling, I think its time. And I'm going to see an Integrative Oncologist in the New Year. Anyway, I wanted to come on here and celebrate because this site and all of you have been a great source or information and empathy and companionship over the 'journey' for me. Thanks everyone <3 To all of you still going through it or just starting, you will get there. I'm feeling well and healthy, a bit vague and tired and pink from rads but probably the best I've felt for months!! You will come out the other side - and you will be braver, stronger and with more empathy and understanding for people in this world!!! Oh, and I'm finally getting some eyebrows growing back, who knew that would be such a great excitement :D
Radiation - Over & out !!
After what seemed an endless 4 weeks my radiation treatment has finished ! Yay ! As of yet the side effects have been minimal but I guess the worst is yet to come if I go by others previous experiences . Mid pink boob area slightly increasing in colour, tiny red dots (foliculitis) & random sharp pains are the only things I'm dealing with at the moment . During my treatment I used ,sorbalene ( given to me by the nurse) ,moo goo, & now Dermaid for the itchy foliculitis . For the ladies who may be dreading this phase of treatment I can honestly say although confronting & strange it is very easy & quick . The challenge for me was lying still for the few minutes without getting cramp in my back , somehow on my mapping day my body lay crooked a pose I had to recreate each time ! It was a tedious process getting there & back in traffic each day for a 1 minute treatment ! Luckily for me my hubby was able to be my personal Uber driver for which I'm very grateful ! All staff I dealt with were super , lovely ,calm & reassuring , however I did tell them I never I never wanted to see them again - in the nicest possible way
Avoiding radiotherapy
Hi, are there any community members here that have avoided radiotherapy and then regretted it later? or vice versa. I had a very small pre cancer, which was non-invasive and I'm in my 40s. I am anxious about radiotherapy (long term effects) and though its the standard treatment (because the precancer was high grade), I am not totally comfortable with it, but perhaps that is normal? Any insights appreciated.