Delayed Treatment

Mind if I join you? I was diagnosed with Grade 1 bc clear sentinel node. Had a wide local excision and sentinel node 4th November and 2 weeks later re-excision as one margin was not clear of DCIS. I saw Oncologist’s Registrars 20th December who offered me Chemotherapy because of my younger age - I’m 42. After an initial dillema whether or not to have Chemo I decided just to have radiotherapy and Tamoxifen. I received an appointment for 4th January but I didnt know what for. When I spoke to my Oncologist Secretary on 28th December she said it was for a Consultation. I told her what I had decided and could my next appointment be for Radiotherapy planning as I was a bit concerned as on 5th Jsnuary it will be 7 weeks since my surgery and in the book it recommends radiotherapy should start 4-6 weeks after. She said to ignore that appointment and they would be in contact with an appointment. I have been getting quite stressed trying to get through to hospital and not getting anywhere. I know Xmas break holds things up but I’m just a bit concerned.

Happy New Year!

Paula.

Sorry your post has been missed, maybe everyone was partying!
Anyway you are very welcome to this exclusive club!
There seems to be a vast difference in rads timings from area top area.
In your case with a grade 1 lump with clear margins and clear nodes you probably don’t need to worry too much. But as we all know that is easier said than done. Grade 1 grows very slowly and your lump was probably growing for ages before you could even feel it.
I hope you get a date soon.
Hugs
Dot
x

Hello

Sorry you are struggling with getting appointments at the moment. I can really appreciate how worried you are, I am having rads at the moment and my surgery was on 2nd August, I did have 2 sessions in Sept but due to an infection and more surgery it had to stop and then I finally started again on 9th December which was over 18 weeks from surgery - yes I worried alot but got through it by reminding myself that the cancer should hopefully all have been removed and the rads is just a precaution to stop it coming back. I have an appointment with the oncologist on Thursday and I’m sure he will put my mind at rest further.

I really hope you get your appointment through soon, it does feel so much better when things are actually happening

Anne

Hello Dot

Thank you for your support. I found it very reassuring and helpful.

Paula.

Hello Anne

Thank you for your reassurance and support. You are quite right, it does feel so much better when things are happening. I’m sure your Oncologist will put your mind at rest further. Hope all goes well.

Paula.

Hi Paula, if it’s any help to alleviate the worrying, we have similar DX and I had WLE surgery on 8th Dec. Onc said rads and tamoxifen (jury still out on chemo) and that rads will start at end of Jan earliest which will be 7 weeks+ after surgery. Unfortunately there seem to be two states to this BC malarky…treatment or waiting!

Hope you get the appointments sorted soon…hugs Zax

Hi Zak,

Thank you for your support and reassurance. Its good to hear from someone with a similar DX to me. Do you mind me asking why you were offered Chemo? I was only offered it because of my younger age, I’m as certain as I can be that I made the right decision not to have it. I hope I am able to find out an appointment to my rads planning Tues.

Paula.

Hi Paula

No problem, glad to be help;-)

Not 100% sure why I am boarderline for chemo but one that I will be asking my BC nurse this week as I dont think I really understand all the reasons. I suspect it a combination of things such as my age (44), size of tumour etc and will let you know the answer.

I have my Onc appointment next week Friday when we’ll make a final decision but today I am erring on the side of not having chemo. Of course I’ll change my mind a thousand times between now and then and drive the poor OH potty. What a choice to have to make!

How are you doing with your appointment, do you have a date?

Hugs…Zax

Hi paula, I missed this post or would have answered you sooner. I was dx 22nd sept, grade 2, no nodes, er+, due 2 waiting for breast mri, my surgery was 20th oct, started on tamoxifen 27th oct. I met with oncologist to discuss radiotherapy, I wasn’t offered chemo, I’m 41, she told me years ago they threw everything at you but nowadays there was no need in certain cases. Also I’m from glasgow and iv waited 13 weeks to start my treatment from date of surgery, I had a meltdown and a very good friend who works for nhs told me that I needed reassurance from my breast surgeon as to whether the wait was ok. My surgeon told me that the only reason I’m getting radiotherapy is for precaution, so the wait would be fine. Good luck, karen x

I had my mx surgery in February (2010) and wasn’t called to rads meeting until early May…I was very shocked at timing too but my Onc said it was all ok! I recognise yours was not mx surgery but maybe speak to the helpline here. I’m sure they can fill you in with rads timings and be supportive whilst you wait.

I remember vividly how distressing that wait was.
Take the best of care now.
Welshgirl x

For GordoK.

I was dx same day as you in Glasgow with Grade 3 Her2+ and clear lymph nodes and had mx on 3rd October. Started Chemo 3rd Nov. I have had 3 x Herceptin combined with Tax (completed 12 weeks after dx). I had the first of 3 x FEC yesterday.

I was amazed at the speed of the treatment and can’t work out why your team seem to be dragging their heels. I am on a clinical trial but that was not confirmed until the week before my first chemo.

Hope you get things sorted out soon and don’t be afraid to rattle some cages until you are satisfied.

Good luck and take care, x

Hi Zax

Thank you for your message. I have an appointment for my rads plalnning 16th January then start treatment 24th January every other day. Did you speak to your bc nurse about the reasons why you have been offered Chemo? I had more or less made my mind up not to have Chemo the day after I saw my Oncologist but speaking to the Helpline and my BC Nurse confirmed I had made the right decision.

Good luck with you Oncologist appointment next Friday.

Paula

Hi Karen,

Thank you for your support, I found your message very reasurring. I’m glad I have my appointments at last. Good Luck!

Paula

For Gordok and Butterfly… I was treated at Glasgow (dx Western, chemo/rads Beatson, surgery Royal)… the wait time for rads at Beatson is longer than many other places but they are really good when you get there! My onc referred me as ‘ready’ for rads the week after my surgery when my arm was still useless… his logic being that the waiting list time was long enough for it to recover. I started rads, if I remember rightly, 9 weeks after surgery. I had chemo before surgery, so a little different.

Hope all goes well for you, there are some great Weegie and central belt girls on here if you ever fancy meeting up with us.

Hope all goes well for other psoters on this thread too.

Hi, well had my planning ct scan for rads on thursday, found that easy finding a parking space was harder, ha ha. I did write a complaint letter due to my delayed treatment but the day I was sending it my appointments arrived. I did feel better after speaking to surgeom and I know they felt that tamoxifen would b working anyway. Its sad that in this day and age there is a waiting list for rads. If I had needed chemo I’m sure it would have started in november. As for meeting up, that would be lovely, thank u rev cat. Thanks karen x

Gordok/Karen we are on the Glasgow/Ayrshire thread here: share.breastcancercare.org.uk/forum/viewtopic.php?f=40&t=30997&p=621522&hilit=glasgow+ayrshire#p621522

I guess it’s probably time we booked another meet up - we are a mix of stages, up to abour 3 years post dx, most between 1 and 2, some still doing chemo and rads. A few ladies come in from Edinburgh and Stirling to join us. Do check us out, we are a friendly bunch