Hi all, I am newly diagnosed, found out on Friday the 13th of all days. Am having surgery on 1st Nov with proposed follow up of Radiotherapy then possibly chemo. I am lucky in as much as I am only having the lump removed and at the moment there is no indication it had spread to my lymph nodes, so all good news really. What I can't seem to be able to cope with is the way this has turned my life upside down.
I am dreading the radiotherapy not because of the treatment but because of the distance I am going to have to travel each day for it and the idea of chemo just horrifies me. I know I am going to be put on tamoxifen which again i dread as i don't take any medications ever. I feel overwhelmed by the changes I am going to have to make but am also having to stay strong as my partner was devastated by the news and is finding it all hard to come to terms with. I have read lots of stories on here from women who have had and are having a far rougher time than me and really and truly do feel grateful that I seem to be likely to get off quite lightly. I guess I am probably in a state of grieving for the loss of my old life and I haven't quite come to terms with what the new one will be. I was so positive when I first found out but the realisation that the treatment goes on for months not weeks seems to have knocked me for six. I know its a small price to pay for your life and I do keep telling myself that, I suppose its because its the start of the journey and I don't know how I am going to react. I am lucky that I have never had any kind of illness or had to be involved with doctors or hospitals apart from when I had my children so to go from nothing to this is quite a leap. Apologies for the rambling but I can't really talk to anyone about how I really feel. I have lots of support from friends and family but I don't want to burden them and become the person that's only seen as the cancer patient. Lord, what a lot of pathetic rambling. I don't know, some people, give them a blank page and no interruptions and they can't shut up!
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Hi, it's not pathetic rambling, you've had some really tough news to get your head around, you're still a wife/mother etc with cancer patient being towards the end of the list. I was diagnosed October 2013, lumpectomies (cancer in both breasts) no chemo 3 weeks radiotherapy, still on tamoxifen, haven't been to oncology since March 2014, although due to go for a review next year, sending loads of love, hugs and good luck wishes for the coming week, and any time you need to talk we're all here for each other xxxxx
I think the fact that you aren't ill but having all this treatment to actually feel worse messes with your head (it did mine) I hated all the concerned faces etc , and knowing my carefree life was a thing of the past. Everything went a bit pear shaped for me , but I just dealt with every twist and turn as I went along -I was diagnosed August 2016 and will have my last Herceptin injection in ten days time , and carry on with the Tamoxifen for another 9 years ! I had a bit of a meltdown in June on holiday , I really still am not sure what I wanted from everyone else , but somehow some recognition of how I had found myself in my own horror story - not sure what anyone else could have done but my husband was fab. I'm fine now and looking forward to moving on now.
What I would say is take every bit of help , be kind to yourself and take things as easy as you can.
I know it sound silly but once you start your treatment you will feel better , you are still in shock too so just get through the next couple of weeks , get things sorted at home for after your operation and enjoy yourself as much as you can.
Thanks Jo, you are spot on with your summary of it. Its the feeling that my life has changed forever which I guess in some ways is a good thing because you have to take better care of yourself but yes, the carefree side of life is gone. Glad you have come through the other side. Its good to know. xx
Hi. I can remember feeling exactly as you do. I had to have herceptin and chemo, no radiotherapy followed By 10 years of tamoxifen. The thought of a whole year of treatment totally freaked me out, and 12 weeks of chemo was my absolute worst nightmare. From my perspective, the anticipation was much worse than the reality. I think you just have to resign yourself to it and get through it. I made new friends in the chemo unit, and discovered who my good friends really were. It brought out the best in some people and others couldn’t cope with it and were no help at all. It’s a learning curve but I found lots of positives as I hope you do too. God bless. X
Thanks Jo, it sounds as though you have had a really tough time. I hope I have the same strength and resolve you clearly have. You ladies on here are truly inspiring. xx
I like you took no medication was never ill so at 52 it was a big shock for me, I could of had lumpectomy but opted for mastectomy as I wanted to avoid radiotherapy had an implant put in it was a day op only recovered really quickly, I take letrozole as I was post menopausal, luckily when sentinel node checked at the time of the op there was no spread to nodes, so I was able to avoid chemo.
We are all here for you, and it helps when people have been through the same, good luck with your op this week
Feeling as you do is very understandable - I had feelings of anger disbelief etc so everything you are feeling is not normal but goes with the territory as the saying goes - the only bit of advice I would offer is "just take one day at a time" don't think about what is coming just go with the flow try to lean on friends/family when you need to I waited to tell most people until after op. And got results back so you know exactly what you are facing - I was fortunate not spread to lymphnodes so just radiotherapy which finished in June - yes Tamoxifen can be a bugger to take and mess with your body but talk to your breast nurse and other Macmillan centres there is a wealth of knowledge out there but like all things it takes a while to navigate and find it.
Your story sounds very similar to mine. I was diagnosed in October 2016 and had my lumpectomy on November 4, 2016. We caught mine really early which was great news. The surgeon and oncologist were pretty certain I was going to be able to bypass chemo, which was my biggest fear. During surgery I had 5 lymph nodes removed and they came back clear and my margins were clear. I was told I was ER/PR+ which was good news. So I was still thinking no chemo and going straight to 43 radiation treatments. My “large” tumor was 1.2cm and my small tumor was .7cm so the tumors were sent them off for the Oncotype DX test. This test determines the risk of recurrence and if chemo will benefit you. If you score anything below a 12 then no risk of recurrence or recommendation for chemo. Score 13-18 risk of recurrence is low and the benefits of chemo are low. Score 18-30 there is an intermediate risk of recurrence but it’s unclear if the benefits of chemo outweigh the risk so you decide for yourself if you should have chemo. Score 31+ high risk of recurrence and the benefits of chemo are likeyto be greater than the risks and chemo is recommended. My large tumor score was 12 but my small tumor score was 29. My oncologist told me “I have no idea if chemo will benefit you, it’s dealer’s choice and you’re the dealer. So I got a 2nd and 3rd opinion and chose to skip chemo. My decision was based mainly on the fact I am anemic and would have to have blood transfusions during chemo and that would possibly put me st a much higher risk for leukemia. I finished radiation in February and started Tamoxifen. My only hurdles have been a lot of cording, lymphadema, and fatigue. I highly recommend having a lymphadema therapist early on. You may not need them but you will be so thankful you have one if you do have problems with cording or scar tissue or swelling. I have only missed 2 weeks of work and that was after surgery. I did my radiation treatments on my lunch hour everyday. It has been the most frightening thing I have ever experienced but I remain positive. I was 50, nearly 51 when I was diagnosed and I will turn 52 in January. I am making the best of everyday. My most valuable lesson along this journey was to never look back or second guess any treatment decisions you make. I’m now on Tamoxifen and it has its challenges like HOT flashes, weight gain, some joint pain but my only other option is to not take it. I can deal with these issues in order to prevent a recurrence of breast cancer. I wish you the best on your journey. Stay positive and strong. Seriously, Fight like a girl.
Thanks Tbott, I'm 52 in January also. Thanks for the info on the chemo scoring I did wonder how that was assessed, really useful to know. I know I will be having radiation treatment but sadly for me I live 1.5 hours away from the hospital so I will have to devote the entire time to just going back and forth to the hospital. Small price to pay for your life I know but still a pain in the proverbial. I know I will also have to take Tamoxifen which I hate the idea of but again like you know there is not much option. I will do my best to "fight like a girl" xx
Hello, I too am recently diagnosed. I had my biopsies on 13th October (bugger) and bad results a week later. Not sure what my treatment will be yet, but I return to the oncologist/surgeon on Monday/Tuesday to find out. I recognised so much of what you wrote. Thank you for being so open.
I find myself mourning for the pre-diagnosis simplicity and normality of my life when I wasn't constantly worrying about treatment, side effects, mortality and more. Yet, I also know I am fortunate in that I have lots of support (including from the brilliant people on here), can access great care and have a disease that is more treatable than ever. I lurch from a zen like calm to an overwhelmed sadness. I don't know if it helps, but I have found that acknowledging the feelings/emotions - all of them - is useful. Yesterday, I went to have my hair done and knowing that I might have chemo, I wept all the way home at what may be ahead. In a strange way, it was good to cry and let it out. I was then able to be with my daughter and husband and we had such a happy evening. Quite the contrast and I needed to express both emotions!
Be really kind to yourself and know that I too now loathe Friday 13th and am thinking of you as we both make our way through this new and strange land we never wanted to enter.
Hi Anna, I have just joined this forum too. Diagnosed on 11 th Oct with DCIS then further biopsy of lymph with results on 18th showed I also have it in my lymph (bugger indeed!). Seeing a surgeon on Monday/tomorrow and whilst I have been good so far and living each day with only a few flashes of reality/thought about it I am now facing up to it (grr) and finding out more.
Your trip to the hairdressers really struck a chord - last night I looked at my roots and wondered should I shouldn't I get my highlights done yet in my usual way, then for the first time since diagnosis got really upset.
I am getting my head round the terms and possible options that may come up which as you said is really hard when at the moment I feel fine.
Good luck with your meeting with the surgeon Mon/Tue and thank you for your post. Good to share although I wish neither of us was here but as someone said , it is what it is.
Hello J, thank you so much for replying and for sharing your feelings so openly - it really resonated with me. I will be thinking of you when you have your appointments and will return here to share the outcome of mine tomorrow/Tuesday. It is wonderful to find such kindness, understanding and wisdom amongst these most testing of days and nights. I hope you will stay in touch and that your conversations go well with the clinicians tomorrow. We're in it together and we will get through it together. xx
Hi Anna, so sorry to hear you are in the same boat as me and you found out on the same day too! Oddly I too went and had my hair done. I had several inches cut off on the basis I needed to have something easy to manage whilst going to and from from the hospital. I also told them that if I was going to need chemo, I would come back and let them shave it all off so they could give it to the wig making charity! Defiant streak kicking in.
Lack of control I think is one of the hardest things. You go from being able to decide your own fate to having a bunch of doctors take over your life. ( brilliant, lovely doctors I might add, its not their fault.) In lots of ways for me it has been a big wake up call theres nothing like the possibility of death to refocus your priorities. The trouble is what you think in your head doesn't always translate to what you are physically able to do in reality. I will be thinking of you Mon/Tues, I am in for my pre -op on Monday then Tuesday for the blue dye injections. Let me know how you get on. I did find knowing the facts made it easier to think about although I totally underestimated the length of the treatment plan which gave me the biggest shock. Big hugs, keep strong. xx
Hi Penny and Anna, how are you doing? I have been having scan after scan to find out if the cancer has spread further than my Lymph as apparently it doesn't usually act like it has. I really didn't want the 'unusual' accolade! I am terrified of it being elsewhere and the implications of that. As you say it's just so strange being healthy and active and feeling physically fine .
I am pencilled in for surgery on Thursday. It what and whether I will need chemo is determined by what comes up from the scans.
Wishing you all the very best and sending empathy and positive thoughts. J x
Hi Jane. So sorry you are having a tough time. It must be really scary but try and think of it as a positive thing in terms of your medical team being super, super efficient and wanting to make sure they get it right for you. I had my surgery last Weds and am now waiting to go back for my results on the 14th. The thing thats made me calm about it all was talking to the lady in the next bed to me on the day of my op. She was 41 and had been through hell. 18 months of treatment and was in for her final reconstruction op. I wont go into all the details of her situation but she was just the loveliest, sassiest, strongest woman. The point is shed had the most awful time but she had survived and so can you. Put your trust in your team and try and find ways to relax as much as you can. The treatment for this thing is tough going and lengthy but the alternative doesn't even bear thinking about. Take it one day at a time sweetie and above all be kind to yourself. Let me know how you are getting on. Much love. Penny. xx
Don't be too hard on yourself.this page saved my sanity ,because as much as I was so lucky with great hubby and friends ,I couldn't tell them what I was really feeling and was brave for them .kxx
Hello , I've had my surgery now , in the end I had a mastectomy and Lymph removal the next day after finding out th fuller picture that there was an invasive cancer as well as DCIS . Have the follow up appointment tomorrow. So assuming I will find out what size etc it all is and the treatment plan.
Getting my arm moving pretty well but no where near able to put my hand up in the air lol Ken I don't care. How long does it take? Should I push harder? Any tips on relief fr armpit which feels a bit irritated.
Hi Jane, sorry to hear things were more complicated than you'd hoped. I go back in on the 8th to have my lymph nodes removed then have to wait to see if I will need chemo. I've done quite a bit of research into the dreaded threat of lymphedema and from what I have been advised I think the important thing is to keep your arm moving as much as possible as per the exercises they give you. I wouldn't push too hard, listen to your body and what its telling you. That's what I always try and do. After my first lot of armpit surgery, Itching and stinging drove me mad. The practice nurse told me to use Vaseline which certainly helped. I also used aloe vera gel. Good luck with your next appointment. Let us know how it goes. Sending big strong hugs and positive vibes. xx
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