Navigating Treatment Options for early stage 1
Hi. I was diagnosed with early stage 1 in April. since then I have seen first surgeon for lumpectomy, successful removal of small tumor and no spread to lymph nodes, and now a Radiotherapist. I'm feeling like I am being viewed as a boob and not a person and finding it hard to get answers to my concerns regarding the treatment - my concerns re: treatment is side effects and other health implications, such as potential damage to ribs and heart. Given my cancer is small and not fast growing, my concerns are that the invasion of radiotherapy may have more impacts than gains. Are there any specialists I can talk to who can give me a more rounded viewpoint rather than just each of the specialists who obviously have a bias. Has anyone else had these concerns, or am I being ridiculous? (I honestly can't tell if I am just reacting to emotions or if I am being logical). Many thanks. All thoughts and perspectives appreciated.
Shoulder bursitis n tendons inflamation
Hi, just wondering anyone has painful shoulder bursitis after radiation? If yes, what do u do to treat it? I had ultrasound on my shoulder on affected side n shows bursa n tendons inflamed. I cannot crossed my arm or reach my back. Dr suggests physio first if not improved will try cortisone injection. Has anyone did the cortisone injection n it works? ThanksTips 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
Radiation Burns - Wet or Dry?
Hello .... I am looking for some advice regarding my radiation burns. I am 6 days post radiation (25 doses) and the skin in centre of my chest has broken down and is weeping. (Also VERY painful) I was given the zinc and castor oil cream and some silicone dressings from the radiation nurses but I am not sure if now that it’s broken down and weeping I should be letting it “breathe” or keep it covered? Many thanks for any tips to help this heal.
Lymphoedema?
Hi everyone, I’m now 3 months post Radiation therapy. After your thoughts and experiences please. Have had swelling, redness under my armpit ( had full auxiliary clearance in July 2019), also elbow has been sore as well. Just to throw another thing into the pie I broke my shoulder mid September during radiation. ( Glenoid fracture). So I’m still getting aches from my shoulder which has referred pain across to my neck and chest. My question is what sort of pain have you experienced with Lymphoedema in your arm, wanting to know what is normal and what isn’t? If there is a so called normal? Trying to figure out what is from my shoulder and what is Lymphoedema. I’m having lymphatic massages every 3 weeks, doing exercises, and swimming. Keeping as active as I can. Thank you in advance. Sending hugs xx
Is this normal?
I finished radiation treatment 6 weeks ago. I had the usual skin discomfort a few blisters that healed well and very sore boobs. After 4 weeks it all settled down but in the last couple of days I have had skin irritation on my left side and pain and it sometimes feels swollen and generally uncomfortable. So just wondering if anyone knows if that is normal. I thought I was over the side effects of radiation!Radiation Done!
Another stage ticked off!. Today was my last treatment day. So far it has not been too bad I have had the usual niggling pains and sunburn like discomfort. I have been told it will peak this week and then slowly improve. The tiredness kicked in on Thursday and by Saturday I needed a long sleep in the afternoon which then made it hard to sleep that night! My skin is feeling hot tonight I think it might be a restless night but Hooray I don't have to plan my day around driving to the hospital. It will be nice to get back to some "normal" routines. Although not sure if I will ever feel normal again after this experience. But that is a whole other story and something I am trying to put in the to deal with later basket.
Radiation and Mepitel
I'm not yet finished chemo but trying to get my head around the radiation in 4 weeks. I have been told that I can use the Mepitel film at Royal Adelaide and at the last appointment I was given a piece to patch test for 24 hours which came out okay. The nurse there said that women who use it tend to do one of two things. 1. Leave it on (fixed up as needed) for the full time of treatment which in my case will be 3 weeks. 2. Leave it on during the week and have it removed for the weekend, reapplied each Monday before treatment resumes. Just wondering if anyone has any advice or information about which they feel is the best method to follow. I'm guessing that the first allows complete protection of the area right throughout but the second allows some air (and washing) plus the opportunity to use the moisturisers. @joeyliz What is common practice at your centre?
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. Xx
