How do I get my head round this?

Hi Everyone, My treatment has been to remove the lump, have three weeks radiotherapy and, by choice give tamoxifen a go. I say by choice because I've been told it will only help me a little and the oncologists were split on whether I could just not bother. I have also been told that there is a very good chance the lump won't come back. Naturally this is good and it is a huge relief but I find myself wondering "how do they know this?" And feeling a bit worried that maybe my treatment won't be effective enough. I was having my radiotherapy with another woman who had similar prognosis but no doubts at all. On the other hand I find myself awake at four in the morning looking at my breast and thinking "is it red enough, it doesn't itch much yet. The other woman's was red and itchy, maybe this isn't working" Okay, so rationally I know everyone is different, but I suppose I need to quantify things in my head. Do a lot of women get this treatment and not have recurrences? I'm only half way through my radio and I suppose I'm still a bit fragile mentally - aren't we all!! I suppose because I was told my lump was benign at first then that changed, then told I needed tamoxifen at first, then told no I didn't, but later that I could have it if I wanted to give it a go because there was a small benefit . Changes make me feel less confident....any thoughts ladies please?This forum so so full of knowledgeable women I trust what I'm told on here. It helps give an overview.

15 Replies

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  • I know how you feel, you say you're only half way through your radio, if I remember mine correctly the redness and burns didn't manifest itself until I'd finished, yes, I too had doubts, cancer diagnosis yet no chemo......but I kept faith in the medical team looking after me, and 3 clear mammograms later they were right, give yourself time, I didn't really get my head around everything until all my treatment had finished good luck with the rest of your treatment xxxxc

  • Thanks Jennymary, I suppose everybody swithers a little now and then. I tend to over think things far too much. I'm staying at the hospital to have my treatment because it's 120 miles from where I live so that's strange too. All week by myself, home at weekends. Long drives in between. I stay in a hostel in the hospital grounds. It's lonely but safe. Access to breast care nurse, cancer support groups etc. Home, is great but intense because I've been away. I always put a smile on my face so no one worries, but my GP has identified "low mood". I have no choice but to trust I guess. Take care mdear and thank you answering, much appreciated. Everything that helps get my head round things really helps, hugs jackie x

  • I don't think there is any simple answer to your dilemma. Like Jennymary, my burns didn't appear until near the end of radiotherapy. I guess reactions depend on the dose of radiation, site of tumour and skin type. Like you, I was told my lump was benign (a cyst) so when it turned out to be cancer I wanted to throw everything at it. Whatever you decide your team will be monitoring you very closely. The hormone treatments are not without their side effects. Clearly they have removed your tumour with a good margin. When I had my treatment they gave me a life expectancy chart. It showed the odds of survival with each intervention e.g. If we did nothing, if we did surgery, if we had radiotherapy, if we had chemo, if we had hormone treatment. When they say there is little benefit they have probably done this sort of calculation on your circumstances. I wish you the very best of luck with the rest of your treatment.

  • Hi Rayswife, that's interesting. The GP read out a letter saying there was a thirty per cent chance it would come back without radio but with radio it would increase the chance of it no coming back by two thirds and with tamoxifen that increased by another two per cent. The oncologist actually told me verbally there was only a five per cent chance it would return. Excellent! You might say - rationally I do! I just need to trust the process I guess. The emotional side of me keeps jumping up and down and saying " forget the statistics, you've had blooming cancer. It could come back!, lurk about in your body and you'd never know" It's that very annoying, wee inner voice bringing me down...Anyway, I really appreciate you taking the time to reply. Hugs, jackie x

  • Hi glenshellach

    Sometimes the goal posts move, when the Surgeon examined me she said, 'it feels fine but we'll do a scan & a biopsy' when they did the scan, the Radiologist sent me for another Mammogram & by the time I got back into the Consultants Office an hour later they were able to tell me it was Cancer; l'd be likely to have a Lumpectomy & Radiotherapy followed by Meds.

    Went back on the Friday & the Mammogram had shown multiple Calcifications so l then had to have a Steriotactic Mammogram 😱 then it all changed, it was showing Multiple DCIS's so now my only option was a Mastectomy & await results.

    I was lucky that I'd found the lump myself only 8 weeks after a clear Mammogram, but it turned out my lump was an nasty, aggressive Stage3/Grade3 Tumour with Multiple DCIS all of the same type TNBC so my only option was Chemo.

    But back to you, you may have different skin to the lady you were talking to, you may be moisturising more, no two people are the same. There are some ladies who may or not benefit from additional treatment with Meds depending on the type of Cancer they have, but for anyone with TNBC there are no other options after Chemo at this time.

    So do some research & listen to what the Oncologists have to say, then make an informed decision.

    Take Care of yourself & l hope the Radiotherapy continues without issue.

    Keep Well 💐

    Mrs N

  • Hi there

    I finished my RT at the end of November everything seemed fine until about a week after when I became blistered and very sore underneath my breast - which was nowhere near the site of my tumour.

    My diagnosis and treatment seems very similar to yours. I think at the beginning from discovery to my op then RT I was swept along on a wave of hospital appointments with little time to think. It wasn't until afterwards and the enormity of it all that I realised what I had actually been through. Then with the addition of the drugs which destroy your hormones your emotions are all over the place. I am still very up and down, as you will probably see from my posts.

    It must be additionally hard for you being away from home and family during your treatment - I was lucky that my husband shipped me to and from the hospital each day and kept me going.

    You have to trust that the medical team know what they are doing - I too have questioned everything but I realise that I am just one of many and feel grateful to them for treating me as an individual.

    It will always be at the back of my mind that this could all happen again - I try not to think about it too much but it is always going to be there and there are times when the thought of it frightens the life out of me.

    Try to keep smiling - sending love and hugs 🤗

    Louise 😘Xx

  • Hi glenshellach. Was half asleep when i sent my reply earlier, finished work now, having coffee in sainsbury, yes. It did take me a long time to reconcile my thoughts into. On October 13 2013, me. Quiet little Jenny had approx 4 cm of cancerous tissue removed from.my body, which if it hadn't been found.......I know the rest of the sentence and I'm sure everyone reading this does, when your treatment finishes try to focus on the future going back to work, birthdays in the family and friends circle, this and/or next year's holiday, and I'm sure over time you will reconcile what you've been through, if you do struggle maybe talk with someone at Macmillan or one of the other fantastic support services available, hope this helps xxx

  • Agree with everything that everyone else has said. It may be difficult at first when I say try and get on with the rest of your life when your treatment is finished. Have fun, do things you want to do and try and think positive which, I know, is not always easy. Trust your medical team. They will have lots of combined experience between them and don't be frightened to ask questions. A big hug to you xx

  • Hi Glenshellach, you hit the nail on the head - it does mess with your head....cancer first-most is an illness that gets into your mind, and that quite often is the biggest battle.

    Everyone has a different reaction to any treatment that we have because we are all unique, so please do not let that get to you. In terms of living with the fact that it may come back - do NOT let that overtake your life. With the treatment that you are having, BELIEVE that the cancer has GONE. Now you have to make changes in your day to day life to make sure that's where it says!

    Cancer can not survive in an alkaline body - therefore take steps to reduce acid in your body and increase the alkaline. If you google - you will see the food that will do this. I have put in a water filter at home to get alkanised water, switch to raw milk, eat as much raw veg as possible, eat organic where you can, reduce meat in your diet and above all cut the sugar. I'm a sugar addict and this bit is the hardest........sugar feeds cancer - so create a body where cancer would not have a cat's hell of survival!!

    I do not know if you are religious, but having faith in God is incredible; it will help you through this journey and gives you such comfort that when there 'is only one footsteps in the sand' - it is then that God is carrying you.

    You will do this....as we shall all xXx

  • Hi it wasn't until after my radiotherapy that I was red never itchy as I was given cream to put on it didn't stay red to long I had 5 weeks radiotherapy and I'm also on Tamoxifen since 2013

  • Hi glenshellach. I hope you can settle emotionally. It can be a roller coaster. Were you told the lump was benign and then became malignant or was it wrongly diagnosed ?

  • It is such a difficult time, i personally would like to have everything just to make sure, but i'm obviously aware that that is not always possible. I must admit that when my main treatment finished i felt scared as i didn't feel i was being looked after, stupid i know, but we go through such emotions. Good luck x

  • Good morning Jackie,

    My advice to you is not to overthink anything at this point. Everybody responds to radiation differently. Much depends on skin type, if and how many lymph nodes were surgically removed, how radiation fractions are planned and delivered, and how meticulous skin care is being performed. I personally know 10 women who had radiation and none had burns or open weeping areas on their breasts.

    I completed 4 weeks of radiation last week. Considering how upset and unsure I was about doing it, I must say that I had really no problems at all. My skin has stayed in tact. I have some minor color changes, but more blotches and red dots where the boost was delivered during the last 4 days. I've had nipple occasional itching. Even though radiation effects will peak during the next 2 weeks, I am not expecting any problems. I use Elocon, a steroid cream every 12 hours. 6 hours after that I apply aquaphor, a petroleum based ointment. So every 6 hours I am applying another product.

    My biggest problem has been radiation fatigue that hits me in the late afternoon. So I try to accomplish what I need to do early in the day. And l listen to my body and rest when it tells me to.

    You do not have to burn or itch to have effective radiation treatment. My radiation oncologist assured me that my entire breast has effectively been treated and that I am and will remain cancer free.

    Since starting radiation my mood has continued to improve and I am back to being myself. I am no longer frightened, crying or depressed. I have already put this chapter of my life behind me and am moving forward.

    My next treatment decision will be about taking an aromatase inhibitor to block estrogen production. Not sure I will consent to that because of the serious quality of life side effects.

    Stay strong. You can do this!

    Robin 💪👍😀😘

  • Hi robin, I'm now two weeks into my three week treatment. It's been better than I thought. Very similar to you in fact. Bit itchy/sore but very manageable. I had a lump, clear margins and no lymph node involvement. I think I just freaked at the word cancer and didn't handle it very well at first. I'm much better now I know what to expect with the radiotherapy. I hope to get it over with and get my life back. I've been told there are certainly no guarantee' s but the chance of it coming back is small. I'm still up and down but part of me now believes life will go on. The lovely ladies here help and inspire me. I'm going to book a holiday after this. Just a few days but I find I can look forward to it and not dwell on "what if' s" that, for me, is progress as I suffer from anxiety. Thank you for replying, much appreciated and sending you hugs, jackie x

  • Hi,I have just finished my radiotherapy 3weeks ago and didnt really get any side effects from the treatment I recieved,a little pink and dry skin on my nipple but nothing major,I wonder if some people react differently.My sister went through the same treatment and she fidnt react either,so maybe its just the way we are.Im on letrozole and im having problems with my legs being stiff ,is anyone having this side effect?

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