Hi springer glad it’s going well!
How do they decide if you need 5 or 15 sessions ?
Thanks
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Hi Ginnie,
My Doc said that as I’m having radiotherapy on the auxiliary area i need to have 15 sessions. He said the research wasnt in yet for them to do the condensed 5 sessions on that area. If i was just having the chest area i could have had the 5 sessions. The overall total treatment is the same, the 5 sessions are just stronger.
All the best xx
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Hi Ginny, Ive been wondering how you are doing? Hope all is good x
Hi I’ve been reading your thread with interest and hope you are well . I am on same position as you .. have had macrame of 6mm found in sentinel node and am recommended radiation which I have opted for but am already fearing that I have spread . I want to know that the radiation will kill it in my axilla even if there are more macros , micros or any cancer … anyway am wondering how you got in and what tests you are having to stay well . I am already started on lettozole and vitamin D and will need cdk something also . Best regards R x
@beck1010 beck1010 I’m sorry to hear of your diagnosis, and I completely understand your fears. I am doing really well thank you. The radiotherapy to my auxiliary went well, and I feel 100% happy with the choice I made. I had 2 nodes removed on my right side, 1 negative and the other with the macromet. It did really scare me and make me think that it had spread. I had a pet scan to help put my mind at rest, which showed no signs of any spread. I also had a yearly check up, which was an ultrasound to my chest and auxiliary, again NED. Im on Tamoxifen for 10 years, and so far so good. Happy to answer any questions, take care and wish you the very best with your treatment.
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Thankyou so so much for replying and I am so glad you are doing well .. I think I am in a v similar position to you in many ways and I am so anxious and scared . I’m waiting for radiotherapy and the length of time has been insane .. I am thinking too of getting pet scan privately because though I absolutely know the nhs are skilled it’s the waiting that is so hard and scary … my initial surgery was the 1st October and they thought it was for DCIS … but pathology showed three invasive areas of three different cancers 7mm of lobular aargh … 4.5 mm of ductal and 1,5 of tubular … then had to do a sentinel node biopsy that showed a 6mm macro ( lobular ) in one out of two sentinels taken … obvs I am convinced that my axilla is riddled with more but they have recommended radiation and I’m already on letrozole . I had the planning scan on Thursday and the date at to begin is 17th December .. I can’t believe the wait it’s hell .. I have written several letters to the breast team and they have been ignored … my nerves are in utter shreds .. several times I have broken down on arriving at the hospital . I find having to advocate when you are in a state of acute trauma is so tough . Am considering self paying for the radiotherapy to begin sooner because I feel that they are literally leaving it to spread .. the nhs is obvs struggling with capacity it’s so worrying . When I have written I don’t want to corn over as entitled it’s just so frightening … being able to speak to someone who has been in a similar position is so helpful … I met a few newly diagnosed lovely people at future dreams house which is a wonderful place , but I am the only one wth lymph node macro and it feels so scary … i really appreciate you replying and I am so glad that you feel good now . Any advice will be most welcome xx
@beck1010 the waiting is the hardest part. Our experiences are similar and I hope I can help make you feel a little better. My diagnosis was 1st july 24, my first surgery wasnt until 27th Sep and radiotherapy wasnt until jan25. There was alot of waiting in between.
The positive you have is that one of the lymph nodes was negative. The cancer and node have been removed. The radiotherapy is going to mop up any left over, and yes its so awful waiting and not knowing if any other nodes are affected. 17th December isn’t too far away, even though at the moment it feels ages.
Another positive is taking your letrozole, think of it working against any microscopic cancer cells, stopping them growing.
Do you have a breast cancer nurse, it may be worth having a chat with them and letting them know how hard you are finding it.
With the waiting, the best thing i could do was distraction, anything that takes your mind of it for a while.
Hope this helps a little xx
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Thankyou so much it really does help to hear from someone who knows how this feels … one minute you feel like you can cope and the next something comes to mind or is playing on your mind and the fear sets in . I had problems with u expected bleeding last year. It was all checked and okd and now I am obsessing about that again …and I have some skin issues and thinking the worst on that .. it’s exhausting .. I think you are absolutely right that the 17th is mot that long away and I should try and be patient .. and I’m taking my letrozole too . Do you find that you can now keep balanced and feel measured about getting check ups and get on with your life without this dominating everything ? Thankyou so much for taking the time to write I really appreciate it xx
hi Soringer , I would update you .. so my consultant rang this morning to say the onco results showed I would not benefit from chemo and so she is going to try and bring the radiology forward for me and will call me on Thursday . I think I will also get a pet scan after it is finished privately but won’t do it now in case it disrupts the system I am in with the nhs .. the same consultant does both and we have been looking into the benefits of taking it private because of the bloody waiting times sending one mental . So the chemo news is one good thing .. my main tumour was lobular and it doesn’t really work on that but the others were differing varieties . I can’t wait for the radiotherapy to begin 
I hope your week is going well x
Hi @beck1010 beck1010 thats really good news! It must be such a relief for you. Im glad your consultant listened and is going to try and bring your radiotherapy forward, fingers crossed for you.
I am definitely more balanced than when I was first diagnosed, and cancer no longer dominates my life. But im not back to myself and not sure that I ever will be. I think about cancer every day. I am much more health anxious and still worry about reoccurrence, I think I’d need monthly check ups to keep me on an even keel! But im definitely getting there, it takes time.
I attended the Breast Cancer Now moving forward course, face to face. I found it great to meet people, and def would recommend. Im also a member of Flat Friends closed Facebook group, and been to local meet ups.
Even though friends n family have been supportive, they haven’t got the same understanding as someone who has been through it too x
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That is very true .. I have been to future dreams house in King’s Cross and met people who have been diagnosed recently and this has been good .. although I feel anxious that I seem to be the only one with a macro in my sentinel lymph .. and that doesn’t feel good . But yes absolutely I had health anxiety before all this so I will definitely have to learn to deal with this as yes I am completely preoccupied with it and can’t imagine not being fearful that it’s spread … also the Xmas stuff is bitter sweet I keep feeling v sad .. it’s like a grief isn’t it … but onwards and we have to trust the oncologists .. what I must ask is how does the onco result fit with the fact it has already spread to the sentinel lymph ? I will ask on Thursday .. I hope you have a good week and weekend planned x
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I can’t imagine not worrying either, I guess I hope that it will just get less.
My understanding is that the Oncotype was only used for node negative cancer. But following results from a trial it is now also used for 1-3 positive nodes. It will be interesting to see what your consultant says.
Busy week at work, and I get more tired than I used to, so looking forward to the weekend- a relaxing one putting up our decorations
Have a good week too, take care x
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Hi beck1010
I had ductal in 2023 and I had one macro and one micro from the SNLB, I had an auxiliary clearance and it wasn’t found in any others. I then had the onco test which came back at 11 but I was asked before they did it that if needed I would agree to chemo.
I had five days radiotherapy and I’m now on Letrozole for 10 years and I’ve just had my second annual mammogram. I didn’t have any scans until my radiotherapy planning where they have found I have a kidney cyst, so another worrying time. I was 58 when it all started at a routine mammogram.
Good luck with your appointment
Sending hugs
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Thankyou for telling me about your situation and I am so glad you had no other cancer in the nodes … this is what I struggle with because I am down for radiation and letrozole and cdk something … I will not know if there were more nodes affected so it feels like a gamble … I hope your kidney cyst is just that I know cysts are v common … I’m already thinking every twinge is spread to my ovaries chest head etc .. how to shake off the angst ? Can’t even drink now to relax 
… best of luck to you and thankyou for sharing . Xx
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They sent me for a full ct scan with dye to check what it was. I was told it is very common and most people don’t know that they have them.
i had my first radiotherapy on my birthday followed by radiotherapy and full ct scan the day after in two different hospitals.
you couldn’t write it
Xx
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We’re over a barrel we want the scans but don’t want them either … at least they are on it x which is best
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Hi @beck1010 just wondering how you got on yesterday, were they able to bring the radiotherapy forward for you? X
Hi no they haven’t and I had a dreadful day on phone trying to get them to . Even the oncologist said they need to and said she has tried . Then she said I would be having ribociclibin after it too which sent me into a spiral . Feel v helpless . Even said we would pay to do it privately but she said the timing would be the same because they would have to do the planning scans again . Feel v low and as if doomed x
@beck1010 beck1010 im so sorry to hear that. Pretty rubbish to get your hopes up like that. Ive not got any experience of ribociclibin, hopefully others on here will be able to give you some advice. Im not surprised you are having a low day. Hang on in there, 17th December will be here before you know it. Keep yourself busy, and spend some time with family and friends, write down how shitty this all is and how it makes you feel and look for something everyday that makes you smile. Xx
That is very good advice thankyou I will definitely do that I think writing down is quite cathartic .. I hope you have a lovely weekend and thankyou again x
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