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Anyone NOT having radiotherapy

17 REPLIES 17
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Re: Anyone NOT having radiotherapy

Hi PJS-66 and welcome to the BCC forums, along with the support you will find here our helpliners are on hand with practical and emotional support so please feel free to call to talk you concerns through.

Lines are open 9-5 weekdays and 10-2 Saturdays on 0808 800 6000

Take care
Lucy BCC

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Re: Anyone NOT having radiotherapy

Hi Lizzy4444, I have just seen your post and wondered what you decided to do. Did you have radiotherapy and did it affect the implant? I am in exactly the same position as you. I had a mastectomy/immediate reconstruction, chemo and now herceptin. Although originally I was told I would not have radiotherapy my new oncologist is recommending that I should but doesn't know the implications for the implant. So the decision is mine but I don't feel I have enough information to make that decision. Many thanks

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Re: Anyone NOT having radiotherapy

Hi Cath , well done you ! The tattoos are incredibly tiny, aren't they ! I went from worrying that they would be big and ugly to worrying that they wouldn't be found when needed ! And just like most of my other worries at every stage of this unexpected journey we're all on, it was completely unnecessary! Good luck with the rest of your treatment & keep in touch .
Hugs,
Kitt
X
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Re: Anyone NOT having radiotherapy

Thank you very much for the wake up call! I think I was having a wobble as no-one to talk to. I have now committed to radiotherapy starting June 1st and had my scan and tattoos today. I'm building up to the tamoxifen..... good luck everyone! x
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Re: Anyone NOT having radiotherapy

I was diagnosed in March with grade 1 Tubular BC of just 4 mm all removed with clear margins with sentinal nodes clear but was told I would be put on tamoxifen due to ER of 8/8 positive and then 3 weeks of rads, I've never questioned any of this as was just so pleased to know it was low grade and totally treatable, I have since gone on the NHS predict tool and know I have between 95-98% of surviving for 35 plus years with just surgery and any treatment would give me approx 14 days extra survival, all this taken in to account I'm still happy to go along with it all as I wouldn't ever want to be in a position of a recurrence knowing I hadn't done all I could to prevent it, who knows what the future holds but for now I'm just happy to be at low risk and taking a tablet every day and having my boob fried for a few weeks is fine by me to live a long and happy life! Xx
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Re: Anyone NOT having radiotherapy

Hi Cath, I was probably similar to you - 18mm invasive ductal carcinoma removed with clear margins and sentinel nodes last November. After my surgery I just wanted to be left alone! It felt like radiotherapy and tamoxifen were only going to make me look and feel worse but then I did the "what if's". No-one can promise me that my cancer won't come back but if it did and I hadn't done everything I could to prevent it then I would never forgive myself.
I've been on the tamoxifen since Christmas without a side effect in sight. Radiotherapy was an ok experience - ok, so I was tired for a few weeks with a hot, itchy boob, but it really felt like I was doing something positive . No sign of fibrosis or shrinkage 3 months after finishing although of course that could still happen.
Only you can decide what is right for you but remember how much research has gone into coming up with the advice you've been given.
Hugs,
Kitt
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Re: Anyone NOT having radiotherapy

I'm so glad I've read your comments. I hope this does not sound ungrateful to all of you with more serious diagnoses. I had a WLE and SNB on 10th April margins and lymph nodes all clear. However I've seen different people at every stage from diagnosis to biopsy results and rads planning tomorrow with more new people. I feel a bit 'processed' with assumptions from early on that I'll have radiotherapy and tamoxifen yet all I see are the side effects. I'm wondering what if I don't have either or don't take tamoxifen. I'm in no rush to pick up prescription. I'm worried I won't be able to do all the competitive sport I do and that my new relationship and job will suffer. I feel nervous and guilty at wanting to challenge the professionals.
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Re: Anyone NOT having radiotherapy

Hi - I'm wondering if anyone can advise. I've had chemo, then surgery and now I've been offered radiotherapy. I'm worried about radiotherapy harming the implant and other side effects. Does anyone have experience of this please? Mine was DCIS and the tumour was 5cm originally. The surgeon says he wouldn't necessarily say I have to have it but the oncologists are recommending it.
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Re: Anyone NOT having radiotherapy

I had 3cm IDC + 1 node, and the oncologist did say he wished he could persuade me to go ahead with the radiotherapy but he accepted that my reasons for not going ahead were valid and didn't push it too hard. I did agree to Zoladex and an aromatase inhibitor he said that would be more effective than Tamoxifen and seemed quite happy.

 

Emxx

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Re: Anyone NOT having radiotherapy

What was their reaction when you opted not to have radiotherapy? Were you offered extra monitoring or anything? I am concerned because I get a rash from 10 minutes in the sun. I am awaiting results from WLE of DCIS intermediate grade estimated at 10mm pre-surgery.
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Re: Anyone NOT having radiotherapy

NICE guidelines say to offer for DCIS and discuss risks and benefits. Did anyone get any insight into this for intermediate DCIS?
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Re: Anyone NOT having radiotherapy

Hi Em

I am also considering not having rads or taking the hormone therapy. i'm 62 had WLE and it hadn't spread to nodes. Only thing that makes me think hard about it is that it was Grade 3 invasive with atea of DCIS and the margin only clear at 1.5mm on one side. I'm going to speak to my surgeon again about it on 14th. Unfortunately, the onc I saw was very curt and dismissive when I and my OH wanted to ask more questions and kept looking at her watch! I know that the NHS us pushed but she needs to learn some empathetic skills before she goes any further in her career.
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Re: Anyone NOT having radiotherapy

Hi

I am not tn but I've decided not to have rads following wle as I am sure it is the right decision for me.

They keep quoting risk and chance of recurrence odds at me, but I feel that they are very general and not at all accurate for my particular situation, so I am happy with my decision.

I hope you are doing ok Brewster.

Emxx

 

 

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Re: Anyone NOT having radiotherapy

When I had  a mastectomy with immediate DIP flap reconstruction 6 weeks ago, I was told  in early December that this was an option because the tumours were small. I took Letrozole for the 2+  months before the operation .Now suddenly despite  a good  biopsy report I am being referred to an oncologist for possible radiotherapy. Today I received an appointment at Mount Vernon in 6 days for assessment along with many others because he is has been and is going on leave. 

I am on Letrozole to protect the other breast, My reconsructed breast is not completely healed  and I have been dressing it myself with Jelonet and Cosmopore.

 

 

 

Has anyone deferred treatment.? Would it make much difference to have radiotherapy in September?

I

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Re: Anyone NOT having radiotherapy

Thanks Jill,that's comforting to know xx although am so sorry to hear of the problems rads has caused you. Wishing you well and thanks for replying xx think you're right, it's been hard to get my head around no rads but equally don't want it to cause more problems !!
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Re: Anyone NOT having radiotherapy

I think they are being very sensible Brewster , excessive rads can be really dangerous . I had rads in 2009 following WLE , chemo . Had three weeks and 15 treatments . Now in 2014 ( on Christmas Eve , so not the best pressie ) I was diagnosed with Angiosarcoma , a cancer of the blood vessels in my boob ...directly caused by the rads . Had to have radical mastectomy on 13th Jan removing boob and chest muscle .
So I would take comfort from the fact that they are very aware , and not putting you at further risk frm this .
Hope your treatment goes well .
Hugs,
Jill xx

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Re: Anyone NOT having radiotherapy

Hi Brewster, not in the same situation as you but just wanted to wish you well, hope the chemo stage was not too bad and am sure you will get some replies soon. X x
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Anyone NOT having radiotherapy

Anyone out there NOT having rads for tnbc ?? I can't have it apparently as I have had chest rads before for lymphoma when I was 20yrs so they won't do it again. Getting toward the end of my chemo and understand rads is really successful with breast cancer so am getting scared about not having rads. Anyone else in the same situation ??