waiting for radiotherapy to start

[mavit1]

Hello JannyB, / Ellajo , big warm welcome . good to hear that your radiotherapy sessions are due to start in the next few weeks

My planning date has been confirmed for next Tues in oxford so I will know when the treatment commences as they will give me dates to attend.

Good luck everybody- keep us updated xx 😘

[Jannyb]

Hi mavit1
I'm new to the site. I had my 10th Oct just waiting for my follow up. I too was told by BCN possibly 15 sessions. I will also have mine at Oxford. Hope all goes well for you l will follow your posts.

Big hello to everybody x

[ellajo]

Hi all, I had my planning CT scan, tattoos and talk with the radiographer yesterday. I am having 15 sessions starting on 7 November. 40 minute drive to the hospital. Having got the WLE lumpectomy over with and just about recovered from that it is now on to the next part of treatment. Thinking about all you other ladies going through this just now 

[Fezzy1952]

hi Mavit I know what you mean I am glad that I will soon be starting the last stage and I will let you know how things are going.  Fezzy xxx

[mavit1]

Hi Fezzy
I had my last surgery in August however they wait at least 8 weeks before undertake Rads. They need to make sure that I am well enough and can raise my arm above my head which I can now do but need to keep working on strengthening it .

Hopefully the planning appt will come through in the next 2 weeks then 2 weeks later start my Rads .
I’m not looking forward to it but I’m glad this is the last stage of my treatment.
Good luck on your Rads - let me know how you get on x

[Fezzy1952]

hi Mavit.  I have just had my planning appointment today, I have got to have 20 sessions as well, was hoping that radiotherapy would start within days but I have got to wait until 31st October it seems that it is normal to have to wait 2 weeks after planning , my journey takes about 25 mins each way and my first appointment is 9.20 in the morning so going to be a busy commute, must say your wait does seem excessive, I thought mine was long enough at 3 months from surgery.  Best wishes to you,         Fezzy

[mavit1]

Afternoon ladies

I have recently returned from oncology to discuss radiotherapy arrangements and have been told I need 20 sessions ( 4 weeks)

I was a bit surprised as my BCN originally thought it would be 3 weeks.

I will need to go to Oxford Hospital for treatment which is about an hour away . Oncologist said they would be looking to commence my treatment sometime in November, probably mid month and that I would receive a follow up appt for my planning date in the next 2-3 weeks in oxford

I am a bit disappointed it is not sooner . It’s looks likely that I won’t finish my Rads until Xmas week.

I cannot believe that 2018 has been a write off for me , Investigations started in February and it’s going to late December treatment should be finished . Will have a follow up appt in the New Year with oncologist and them back for another mammogram May 2019

Hope you are all doing ok 👌 x

[Lilacmoon14]

Great news xxxx
Everything is so much better once you have your dates and an idea of what you are working towards.
I was a mess of snot and tears at my planning day but in the end it was all upset and stress over nothing. Not that rads is nothing, i just mean I wasted a lot of energy stressing when i didn't need to.
All the self care I needed to know during rads I got from this forum.
I got all my dates at my planning session and they started 2 weeks later. So hopefully you will be starting before the end of the month.
😊🦋😊

[Fezzy1952]

Just got my planning date today which is the 17th October, so hopefully be starting rads before end of October, got to have 20 sessions.

[Fezzy1952]

Dear Lilacmoon good luck with your therapy sounds interesting, Anastrozole seems to be frying my head, feel very fuzzy when I wake in the morning xx

[Fezzy1952]

no date yet I should hopefully find out on Monday, keeping fingers crossed it won't be too long to wait, just want it over now, I feel as if I am in limbo, I am sure once I know I will feel better , Fezzy xx

[Lilacmoon14]

By date, I meant for rads, or will you find that out next week? 🌻🌼🌻

[Lilacmoon14]

Hi Fezzy xxx yep, all good here. 12 weeks since the end of rads and although still some stuff going on with boob settling down, no ongoing problems of note.
I had my final appointment with the BCN team last week and Im now looking to start a HOPE course early Nov. Just a 6 week group theraphy to sort the old gray matter out.
Any news on a confirmed date??
🦄😊🦄

[Fezzy1952]

Thank you Lilacmoon I have bought some Aveena moisturizer cream in readiness just hope it won't be too long before rads start, hope you are doing ok xx

[Lilacmoon14]

Dear Fezzy, just catching up on the forum and wanted to see how you were getting along. So glad to hear that you have a date and things are starting to move along.
Get drinking heaps of water and stock up on the moisturiser!!!
🦋🦋🦋

[Fezzy1952]

hi Zellah the guidelines are 31 days after surgery for radiotherapy but most surgeons like to wait until you are fully healed before starting radiotherapy. I am seeing the oncologist on 1st October which will be nearly 10 weeks since surgery for wle and sentinel node biopsy so it might be 12 weeks post op before I even start rads. hopefully you won't have to wait this long, as I do know that it varies greatly depending on where you live.  Fezzy x

[Zellah]

Can you tell me what the guide lines are for waiting for radiotherapy, I thought it is up to 31 days after surgery?  

[Susieone]

Hi Fezzy
I had same opp as you 6weeks ago. All clear cancer was 4mm but pre-cancerous made up to 4cm. Snb clear.
Had infection week after opp had to take antibiotics I feel fine now but still got part pinky/ red area but it's not bothering me.
Ready to get on with last leg of treatment now.
Susan x

[Fezzy1952]

hi Susan like you I am hoping to be through the radiotherapy by Christmas so I hope the planning won't be too long after seeing the oncologist, considering I have had to wait nearly 10 weeks since my wle and sentinel node biopsy to see the oncologist but I do now feel happier that things are progressing, hope all goes well for you on the 2nd x

[Susieone]

Hi Fezzy 1952

Glad things are progressing for you. I had my appointment with oncologist 7th Sept and have my planning on 2nd Oct seems a long time between though. I have a seroma that's going down think they wanted to give me time.

I asked if there was any detriment to short delay be for starting radiotherapy and he said no it's fine within a timescale they work to. I'm not going to worry I was hoping to be done for my 61st on Oct 20th but as long as all done before Xmas that's ok.

Susan x

[Susieone]

Hi Aplletree

The BCN seemed all for it but said to discuss when I go for my planning session. I also phoned the radiologist who sent me the info she answered any concerns I had.
It's 6 of 1 and half a dozen of other lol
They say to do whats best for me so I'll ponder some more. X

[Appletree]

This sounds very interesting, Susieone.

Have you discussed the pros and cons with your BCN? I would want to be able to weigh up the benefits against any possible long-term disadvantages to me personally. Research is so necessary and giving something back to others is very important, but don't take part in something if it is going to give you extra anxiety and leave you worrying about any longer term effects. Don't do anything out of a sense of duty.

If there is no likelihood of complications for you personally, well, have fun!

Whatever you do, make sure it's your own decision and you're comfortable with it.

[Fezzy1952]

got a letter today seeing the oncologist on 1st October so I should soon be starting treatment very relieved to hear something 

[Susieone]

I've been asked if so want to take part in a research study when I start radiotherapy.

It's a special bra aimed at people with larger or low hanging breasts. (I've got big boobies) there a 50/50 chance of taking part.

The aim of the bra is to allow treatment to be given with only 1 tatoo. And allowing breasts to remain covered during treatment.

If allocated a bra there may be a slight increase in skin reaction compared to not wearing the bra due to the way the bra absorbs some radiation. This increase may be balanced with reduced reaction at base of breast.
If wearing bra 2 CT scans needed one with and one without bra.
There are questionnaires to fill in during treatment.

Need to decide if I want to take part.
Any thoughts from you lovely people would be great.
Thanks xx

[Fezzy1952]

Dear Lilacmoon to be honest I am just going with the flow now, at least I have made them aware that I was concerned about the wait so I suppose I can do no more other than wait, it's almost like your life is on hold, not being able to make any plans for a few days away in case I get a phone call, I was told that I will be able to get the sessions at the same time every day so at least it's easier to plan the days, just want it over with. xx

[Lilacmoon14]

Dear Fezzy, Im glad that you are starting to get answers.
My rads were at a totally different hospital to my surgery/onc team, but it all kind of worked out well in the end as I was able to book the same time slot every day for all 18 sessions.
Looking back now I feel a right twat for getting so worked up over it all, when in the end I actually enjoyed the sessions (!!!) as everyone was so lovely and took the time to chat even when I knew I was the last body of the day and they wanted to get home!

[Fezzy1952]

sorry Bibi didn't see typo until after I posted x

[Fezzy1952]

Bilbo hope all goes well with your treatment. it appears that the hospital I have to have treatment is busy it is not the same one as I had surgery in and everything has been fine up to being referred to oncology. The oncotype score is in the grey area of needing chemo or not, it is up to oncologist, I am off for a dexa scan today at the same hospital, might ask why there is such a wait xxx

[Bibi]

Fezzy that does seem a long time compared to most people - have they said why it is taking so long? I don’t know what your oncotype score means - have you researched possibilities for that score - does it depend on your age? The waiting and uncertainty for next step is always hard - if they told you at start the procedure / waiting time it would help,  I hope you hear soon and appointment is not 4 weeks - is your hospital known for having long waiting times? The only good possibility is that maybe they don’t think you are an urgent case but that doesn’t help you when you are in the waiting period does it. Sending you hugs - take care xx

[Fezzy1952]

just a phone call back from bcn, apparently they are chasing up my oncology appointment she said it can take up to 4 weeks to get an appointment that will be nearly 10 weeks post surgery does this seem a long time to wait to hear what treatment you will be having, I was given a oncotype dx score of 22 so still don't know for sure if it will be chemo or radiotherapy or both 

[Fezzy1952]

thank you Lilacmoon I am still waiting for a reply but I will definitely ring back on Monday if I don't hear anything today. I will be post op 8 weeks on Wednesday got my oncotype dx results 2 weeks ago and was told then I should hear about radiotherapy within 10 days

[Lilacmoon14]

Dear Fezzy, I had my surgery on the 3rd May with rads starting 6 weeks later on the 13th June. It seems stardard practice for it to be 6/8 weeks so that things can heal.
You've done the right thing by gettingv8n contact with your BCN but follow this up first thing Monday if you haven't heard.
Maybe just an admin slip up but even so.
Good luck xx

[Fezzy1952]

thank you for your reply bibi I have been in contact with my bcn today and left a message so fingers crossed I will hear something soon. it does seem that we are always waiting for appointments or results which doesn't help with the anxiety 

[Bibi]

Hi Fezzy - I had WLE on 26th July , had planning appointment last week (6weeks later) and starting rads next Monday. Have you tried getting in contact with your oncologist secretary to chase it up? I would have thought you should have appointment by now according to the guidelines I have read.

Hope you hear soon - the waiting for appointments can be quite wearing can’t it? 

[Fezzy1952]

I am still waiting after 8 weeks since wle surgery for an appointment to start radiotherapy. I have been given anastrozole which I have taking for 2 weeks (so far only mild side effects) just wondering how long is usual before it starts. must admit I am starting to get anxious now.  Fezzy 52