Hey @rachel60 , sorry to hear it wasn’t 100% the news you were hoping for - but the lymph node news is brill! I’ve met someone who had TNBC who is currently on cape and managing with it well. Sounds like they have a plan in place which always makes me feel better. Hope you are healing well from the op xx
Thanks Jess and absolutely right. I’m taking it as a positive that treatments are available. My surgeon was upbeat and stressed that its all about prevention now. Technically I no longer have cancer cells but there is a risk and better hit it hard now.
Good to know people tolerate Cape. I think its different to infusion chemo that we all went through. Many of you have to go through hormone treatment which is really tough. So us TNBC women don’t get that but instead a bit more insurance policy in our pockets.
Hope you are doing ok. The group of June 2023 has done well!
@rachel60 thats such good news that the lymph nodes are clear. Sorry to hear the margins weren’t clear from the lump removal but it sounds like your team have seen it before and know what to do. As @Shi says you may want to check about the difference in having the chemo tablets and another surgery to remove the remaining cells. Better to be fully informed.
I’ve only had 5 sessions of radiotherapy and was advised that it’s a higher dose than 15. The oncologist decide what is the best for each person. Sometimes the 15 a lower dose is better than 5 at higher. Mine is all preventative/clearing any random cancer cells in the body/blood stream from my July surgery but it’s still demanding on my body. Three days into radiotherapy side effects are kicking in big time, fatigue, achy chest, back and shoulders, itchy skin and problematic sleep. Doesn’t help that I’m having both sides treated so I’m back to sleeping on my back which is not natural for me.
I hope you get all the information you need at your next appointment.
Good meeting with my consultant today.
I had “weak residual” after my lumpectomy but in original tumour not margin which were clear - so no more surgery would help. The cancer cells are out and lymphs clear.
She said Technically I’m cancer free. I will have tablet chemo and to think of it similar to Immunotherapy - part of the post surgery insurance. Immunotherapy every six weeks until June and tablet chemo 2 weeks on and 1 week off starting March until September. Then done
I will have radiotherapy in February and seeing consultant next week to plan.
I’ve come along way. Not done yet.
Huge hugs to you all - an amazing group full of love and support.
Rachel glad you’ve had this great news Shi xx
That’s really great news. The plan seems logical. It always makes you feel better when it’s fully explained and the reasoning behind it all.
One part of the plan done, now onto the next.
I’ve just finished radiotherapy on Tuesday, I had 5 sessions on both boobs each day, so double radiation for me. After 3 days I really started to ache, I thought having two day break at the weekend, as I started on a Wednesday, would help but it didn’t. On the Monday I got told to take paracetamol as they could tell I was in pain and I wasn’t relaxing properly or holding my breath for as long as they needed. Tuesday session was easier with the paracetamol.
I still feel very achy in the ribs and feel like I’ve done loads of sit ups. I am fatigued but try to do 2 walks a day. I’ve also started Letrozole, hoping side effects are minimal as I already have hot flushes/surges and achy joints.
Thanks and yes pleased to have a plan. I can do it!
Sorry that your rads sound tough. My oncologist said to expect tiredness. Its never ending isn’t it.
Can you rest up this weekend? My immunotherapy makes me ache and dreadful bone shivers. I rely on Epsom Bath salts. Would that help you? I also got a small heated blanket from Amazon. Cheap but efficient!
Sorry to hear how the immunotherapy causes the side effects. I have Epsom Salts and have a bath nearly every night. I even bought the CBD version from Westlab, it smells nice, not sure it does anything else.
Yes I will be resting this weekend until I feel better. I have another Herceptin injection next Thursday as well.
Hi Rachel, that’s great news The treatment worked . And you have an action plan until September, which is great. Almost there and hopefully this part it’s easier (on side effects).
Hello - how is everyone? Hopefully at the end of active treatment or getting there. I’m having a big change with leaving my job. Heart just not in it and want to do something different. Bit scary but not as scary as cancer…
Start radiotherapy on 14th (my valentine’s date!). Any advice? Worried about breathing. I can hold breath but the technician counting didn’t help during planning! Also skin but I guess lots of cream afterwards. Before too or just afterwards?
Hugs to you all xxx
Hey @rachel60 , super lovely to hear from you! Hope you are recovering from surgery well. I think BC makes us all question things and where we want to go in life and it sounds like you’ve made a good decision for future you. Have you got any ideas what you’d like to do next? I’m nearly 2 weeks since finishing radio (I had 15 sessions), overall I found it very manageable compared to chemo. I didn’t find the breath hold well explained either but I managed to do it each time, the machine stops if you are out of position and starts again when you manage to hold your breath again. They gave me flamigel and I applied that twice a day, morning and evening. I also was given radiaderm which I found really good and applied that in the afternoons. I was very worried about my skin as I’m naturally really pale and have sensitive skin, but it wasn’t too bad, it became abit red and sore but not as bad as I imagined and is slightly tanned now, not red anymore. I also did feel fatigued for about a week afterwards… but if I’m honest it could have just been mental fatigue from finishing active treatment?! I walked out of my last radio and didn’t know what to do, I wanted to be happy but sometimes it feels like there’s a bit of a cloud hovering over me, I really hope this improves in time. I have my follow up with the oncologist on Tuesday. Think he will check my skin and also find out how I’ve been getting on with the aromatase inhibitor. Let us know how radio goes Rachel, rooting for you xx
Rachel60, drink plenty of water on rads helps with fatigue no cream before or deodorant cream after some good ones that many of us have used, Moogoo, Aveno, e45 and dr organics you might have to try a few till you get what suits you I kept one in handbag so I could slap on while out and about and kept one in fridge at home didn’t have to breath hold so can’t help with that. You can find as you get further into rads you might just drop off to sleep without knowing so be aware if your driving Shi xx
Thanks so much Jess. Makes such a difference to chat with others who have been through this. Very much looking forward to leaving my job. I work alot on gender equality, science and climate so will see what is next.
I know what you mean about the little cloud. I’ve been doing some sessions of talking therapy and that has helped but I think its just that we know what uncertainty looks and feels like. But we are tough to get through so much.
Radiotherapy sounds doable and pleased machine cuts out if I lose the breath hold. I had visions of the high beam hitting the wrong place!!! I was fine during practice so fingers crossed. Good they recommend and provide some cream. I have MooGoo just incase its needed.
Take care xxx
Thanks Shi! Yes good reminder to drink loads of water and also rest a bit. I have MooGoo which I’ve used since my lumpectomy. So will try that.
15 sessions and I can tick that off the list.
Glad all is well so far and starting radiotherapy on Wednesday.
I finished mine 3 weeks ago. I had 5 days but on both boobs so it took twice as long and I had to breath hold for both sides. They sent a leaflet home and told me to practise but I found this website from Sheffield Hallam Uni which helps explain with videos.
I found my first 3 days ok, I drove myself, then had a 2 day break due to weekend. On the 4th session I had a lift and they could tell I was in pain and told me to take paracetamol. I couldn’t hold my breath for as long as the previous sessions and they saw me flinch when they moved me around. It doesn’t happen to everyone but worth being aware. My main pain was my ribs and I took paracetamol 4 times a day, they still hurt now but I now mainly managed with ibuprofen gel rubbed on them. My boobs went quite red and one swollen which they said was normal. I used Radiaderm R1 cooling gel, to be used like a mask for 20 minutes afterwards and R2 as a 3 times a day moisturiser. I continued using until I had finished them. I still moisturise now but with Adex gel ( non fragranced from GP used for eczema etc). They are now mottled pink.
I continued to feel fatigued after chemo as I was not sleeping due to hot flushes/surges and taking Letrozole has added daytime symptoms as well as at night.
I was told I could wear deodrant but I didn’t have my lymph node area/armpit treated. I could moisturise first thing as long as it wasn’t too thick or greasy. I think it depends on your team what is advised.
I think as with chemo everyone has different number of sessions, body areas and side effects.
I was also told to keep hydrated and rest as much as possible. Most of all be kind to yourself. You’ve just done chemo and now this.
I like you am thinking of leaving my job. Teaching in primary school full of bugs is not something I want to continue doing getting multiple colds and infections before cancer! I have asked for redundancy, maybe get early retirement as I’m 55 in 11 days. Chat with union and HR hopefully next week to talk about options. I’m not sure I could teach anymore with the fatigue, hot flushes and brain fog. I remember I suffered for more than a year before going on HRT, it’s hard being in a class of 30 pupils staring at you when you have a hot flush or words fall you. They look up to you for knowledge and guidance and you can’t function. I remember trying to think of a word and it wouldn’t come, I could describe it and had to ask the assistant for help. Not doing that again. I’m sure this is best. I feel I need to get well, reduce some of these side effects and find the new me, whoever she is. Then I can decide what I do after that. I am hoping to continue a volunteer role I did a local Foodbank in a few weeks.
@Jess_1 so lovely to hear from you also. Totally get the mental fatigue. I couldn’t quite get to grips that I had finished another stage of treatment after radiotherapy. I got up of the table and cried and said I couldn’t believe I was there. I still have 3 weekly Herceptin injections until September. How are you getting on with the aromatase inhibitors? I’m back with my surgical team on the 14th for a check up with the breast care nurses. Starting counselling on Tuesday, not quite sure where I am mentally with everything. Hoping it will help.
Hugs to you all
I’m glad you have finished radio @naughty_boob but sorry to hear you are experiencing pain, everyone seems to react so differently. I think it’s good advice you have given to @rachel60. I understand about the work situation. I have been in several meetings (online, WFH) and have forgotten very obvious words and stumbled on my sentences. I try and laugh it off with my colleagues, but I hope they still think I’m up to the job. I am on exemestane and Zoladex injections. My oncologist gave me the choice of tamoxifen or what I am currently on. I went with the AI as it gives me slightly better odds. I’m finding it manageable, abit achey in the mornings, hot flushes aren’t too bad, acupuncture seems to keep them under control. I hope letrozole isn’t too tough? Xx
Thanks so much @naughty_boob and you are always so great at advice. I will take all of that on board and perhaps keep cream/gel in fridge. I do have sensitive skin!
How on earth you manage with teaching is incredible! The germs and the energy levels to do a difficult job. I’m exhausted sitting at home staring at the screen. But hoping to do a deal to leave asap. Might be as near as end March.
Take care and keep us posted.
I’ve not been back to work since last May. With the treatment and emotions involved in the diagnosis I just couldn’t cope. My oncology team said I would be best to not work until after Herceptin finishes end of September and then need 6/8 weeks to build up my immunity.
Thinking of my role, planning, preparing and delivering lessons is going to be problematic now. Let alone the interactions with the children when they want an immediate response. Also impossible to have time out if you are feeling off.
My breast care nurses on the surgical team have said they have many ladies who reevaluate their lives after cancer and leave their jobs as it’s no longer working for them.
I had thought of acupuncture but it’s finding one local that fits the bill. One is Chinese based and the other is clinical. I think the Chinese based might be better but need to research more.
It’s nice to hear the the oncologist discusses the treatment with you, mine just told me!
Good Luck with radiotherapy today. I completed radiotherapy about 5 weeks ago.
I was just like you worrying about the breath and not being able to hold and they zap something else!!
There was no need to worry they assured me that it was ok if it happens.
I di not experience any side effects or intense heat /fatigue etc. All I have is a tanned left boob. I did moisturise with just Aveeno after showers twice a day but nothing before radiotherapy. Shower cool/warm water not hot.
They did advise not to start any new creams/potions as the skin may be sensitive so continue using what you have used before. Don’t go stocking up like I did
All the best with ongoing treatment.
Hope everyone else is doing ok?