70457members
370641posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Starting Radiology April 2019

ambychlo
Member

Re: Starting Radiology April 2019

Hi angie, I have my marking up scan on 28th March, do you know how long after that radiation treatment starts. I turn 50 in April and my daughters had already booked a short break to Spain on the 1st May. I’m stressing about not being able to go

Me.sinclair
Member

Re: Starting Radiology April 2019

 

You know, the more I think about it, I think you are right, she said tamoxifen if my bone density isn't good. I'm confusing myself now 🤔 I'll just wait until I see her. My brain is all over the place at the moment.

Maureen

Stirts
Member

Re: Starting Radiology April 2019

Hi Maureen

Now that is strange as I was told that Tamoxifen reduces the risk of osteoporosis in post menopausal women ...so it's one of the benefits..however aramatose inhibitors such as Arimidex definitely increase the risk.

 

Me.sinclair
Member

Re: Starting Radiology April 2019

Thank you Stirts for such a positive post. So pleased to hear that your treatment is going so well.

i have bought some E45 cream and started using it as I wanted to be sure it was ok with my skin, I do have some allergies but it's fine.

I think I am feeling positive about the radiotherapy, just need to get on with it. I may say something different the closer it gets to my starting date of 8th April!! I think it's the hormone therapy I am more concerned about. My oncologist mentioned tamoxifen but no decision will be made until she has the results of the bone density scan which I have a week tomorrow. She says the tamoxifen can aggravate osteoporosis so needs to have the scan results before deciding. I think this is because of my age (65). I am so glad to hear you are not having side effects. 

I am actually quite surprised at how good I feel at the moment. I think not having any appointments or test results due this week and next has helped me to relax and feel more normal.

Thank you again for your reassuring post.

Maureen 

ladybowler
Community Champion

Re: Starting Radiology April 2019

Stirts

 

What a lovely reassuring post.

 

It is a shame that in general it is only the bad experiences that you hear about.  I too sailed through mine 15 and 5 boosters with very little problems at all, in fact the biggest problem for me was the daily trudge to the hospital and back, I hated having my life dictated by this one appointment however it was soon over and, at the end of the day, you know it is for a good reason that you are having to do it.

 

I must admit I know the days when I have not taken enough water even now, feel sluggish and tired, but as soon as I drink it is fine again.

 

Woo hoo only 3 more to go, roll on Wednesday and then you can celebrate having completed it.

 

I have been on tamoxifen for two and a half years now with very little side effects, will be on it for 10 years in total.

 

Helena xx

angie123
Member

Re: Starting Radiology April 2019

Thank you, Strits - it is ndeed good to hear from someone that has been through and had a positive experience.  It is very much appreciated.

angie123
Member

Re: Starting Radiology April 2019

Thank you, Helena.  I have the date of my first session already - next month.  I think I will just give them a call tomorrow, just to check what they recommend about preparation for the first treatment session.  I need to get in the habit of drinking water too!!  I don't drink any at the moment and will find it hard to get up to the levels suggested - but in the grand scheme, drinking water is not going to be too difficult 🙂

Really appreciate your posts - thank you.

Stirts
Member

Re: Starting Radiology April 2019

Hi Lovely Ladies

I have been reading through your posts and I thought that I would give you some reassurance and positive thoughts. As has been said you mostly hear about bad experiences or problems ... so here is mine.

 

My treatment plan was 15 rads and 4 boosts.. at the moment I have only 3 boosts left to go next week ..the boosts treat a much smaller area. So far, I have had very little side effects - no fatigue at all and still walking miles every day. My boob has sometimes looked slightly pink but I've never felt it hot or burning ..I've had worse sunburn sitting out in the garden for half an hour with no suncream. No pains in it either. The hospital gave me Zerobase cream to put on morning and night and also Betnovate (hydrocortisone) to put on once in the evening. and I've done this without fail. Also I have been drinking more water but I've not been obsessive about it !

 

As for Tamoxifen, I've also been on that for 8 weeks now, also no side effects and the hospital told me that if there were to be any they show up early on.

 

Actually I am feeling really well and it might be because I am better hydrated ..so I think I will try to continue with that anyway.

 

I hope that my story has made you all a little less nervous about the process.. yes, it's a pain going every day, but then so is travelling to work every day !

 

Hope this has helped ..good luck to you all with your treatment 

xx

 

ladybowler
Community Champion

Re: Starting Radiology April 2019

Maureen

 

Once you get into the habit it becomes second nature, the only trouble is the consequent loo trips but actually that is getting all the toxins etc out of your body.  At first I would set the alarm on my mobile for every hour to remind me to drink, it also helped that I would have to take a walk to the water machine to fill my bottle so I was moving away from my computer 🙂

 

xx

Me.sinclair
Member

Re: Starting Radiology April 2019

Thank you Helena, that's a good idea about the 500ml drinks bottle. I'm sure I don't currently drink anything like that amount daily so I will have to be strict with myself!!

ladybowler
Community Champion

Re: Starting Radiology April 2019

angie

 

Have you got your first appointment date/letter yet, if so there is usually a number on there to call which is direct to the radiotherapy team, give them a call and ask them.  If not ring themain switchboard number and ask for the radiotherapy team.  I think you will find your rads team will be very different.  I know when I had my planing apt it was very brisk, handed loads of leaflets, given the info about fluids and E45

 

xxx

angie123
Member

Re: Starting Radiology April 2019

Thanks Helena. There was no option to ask anything when I had the 3D scan - in & out as quick as anything. They didn’t appear a friendly bunch to call!! Smiley Frustrated No mention to use anything before I go in a couple of weeks for the first session. You’re absolutely right how much each hospital differs (and I think I got the unfriendly, uncaring one!) 

ladybowler
Community Champion

Re: Starting Radiology April 2019

Maureen

 

Never worry about asking questions either, they are never silly if it is something that you are not sure about, there will always be someone on here who will be able to help and, of course, there are always the nurses under Ask Our Nurses.

 

helena xxx

 

ladybowler
Community Champion

Re: Starting Radiology April 2019

Maureen

 

They just said to ensure that I had at least 2 litres of fluid a day.  I had a water bottle by my desk which was 500ml and one at home for the days I didnt work so that I made sure I had 4 of them a day, anything else I drank like tea etc was a bonus in my way of thinking xxx

ladybowler
Community Champion

Re: Starting Radiology April 2019

Angie

 

Isnt it amazing how each Trust differs.  At my rads planning appointment I was told to use E45 2/3 times a day and to never apply it less than two hours before my session.  If you are not sure give the rads teams where you are going to have your treatment a call and check with them as they are the ones who will be monitoring your breast on a daily basis.

 

Helena xxx

angie123
Member

Re: Starting Radiology April 2019

Maureen I was told to drink 2.5 litres a day in total, for the duration of treatment plus 3 weeks afterwards. 

HTH

angie123
Member

Re: Starting Radiology April 2019

Thank you, Helena. And I also have a question! The oncology nurse told me not to use any moisturiser at all in my breast and said if it got too sore it would have to be dressed. When you say to moisturise 2-3 times a day - can you explain more? 

I was told to drink 2.5 litres a day for the duration plus 3 weeks after. 

Thank you for any light you can shed on the moisturising point. 

Me.sinclair
Member

Re: Starting Radiology April 2019

Thank you for the hug, Helena.

can I just ask what is probably a silly question (I'm full of them)?

When you say two litres, is that a total of two litres or two litres extra to what you would normally have?

Maureen

ladybowler
Community Champion

Re: Starting Radiology April 2019

Ladies

 

Sending you a virtual group hug.

 

Make sure you take in plenty of fluids, I was told two litres a day, moisturise 2/3 times a day and rest when your body tells you. Like everything with our treatment stages it is fear of the unknown but once the first one is over you will be OK as you will know what to expect.

 

Sending you all hugs

 

Helena xxgroup hug.jpg

angie123
Member

Re: Starting Radiology April 2019

I could def do with a virtual group hug!!

 

PS at the hospital I have to go to they said they would validate the parking ticket for days I have radiotherapy - but the parking is extemely limited and I very much doubt I would get in (on time, at any rate!)  I'm not going to bother to try, it would be too stressful queuing up and worrying about missing my slot.

Me.sinclair
Member

Re: Starting Radiology April 2019

Hi Angie and Barbara,

you both start on the same day so will be just ahead of me. You can let me know how it is. I am having 15 sessions. I understand that they don't do treatments on bank holidays so I should finish on April 30th.

 

Angie, you should ask about the parking pass. I was told that as I was having radiotherapy I didn't have to pay for parking. I assumed it was the same everywhere. At my hospital the radiotherapy unit is slightly separate from the main hospital and has its own car park so maybe that's why it's different. 

 

I saw my surgeon before and after the op then had a follow up appointment with her 2 weeks later. Isn't it strange how different hospitals operate, you would think they would all be the same.

 

i think I have scared myself by looking at the threads about hormone therapy here and reading about side effects. I am trying to convince myself that only the ladies who are having problems have posted. I do know several ladies who have had no side effects at all, hopefully I will be the same.

 

So, there are 3 of us starting in April. I wonder if anyone else will join us. We can do a virtual group hug! Seriously, I think it will be good to keep in touch and chat about how we are doing and feeling. People are sympathetic but unless they are going through this, they can't really understand how it affects you. 

 

Maureen

ps. No problems logging on today, maybe it was just a hiccup 

angie123
Member

Re: Starting Radiology April 2019

Maureen

I hope you have managed to log on without re-setting your password now.

It sounds like you have had the sort of treatment I would have expected.  I had 10 minutes withthe surgeon and another 10 with the BCN at the first appointment, and post surgery didn't even see my surgeon for any follow up.  I am jealous too of your parking pass - no such thing at the hospital I am going to.  How many sessions are you having?

I start radiotherapy on 04/04, but need to phone the day before to check that it can go ahead.  I hope to get the schedule then of all my other appointments so I can plan.

I haven't looked into hormone therapy yet.  I think until the oncologist tells me which one I will be on, I am not going to do any research.  I don't need to know what side effects for which drug yet...  I am working only on a need to know basis these days!!

I hope the next three weeks can be fairly letter and appointment free for you too!

angie123
Member

Re: Starting Radiology April 2019

Hi Barbara

Hello and thank you for your post.  I am in awe of you still working!  My brain isn't really up to that!

Interesting that you have started your hormone treatment already - I am not starting mine until after radiotherapy has finished.  We start radiotherapy on the same day - how many sessions are you having?  When did you have surgery?

Good to talk to you!

Bebe28
Member

Re: Starting Radiology April 2019

Hi Angie ,

I had surgery lumpectomy and lymph node removal with six out of 16 nodes affected. I was told I would have chemo followed by Radiotherapy and offered a trial . I opted for the trial , my tumour was sent away re-examined and I was told Chemo was not necessary just hormone treatment and radiotherapy.  I have started the hormone treatment  and first radiotherapy is 4 April. Had my planning and am attending at ADDENBROOKE’S  Cambridge . Still holding down a full time job and intend to continue through treatment even if it requires me to work from home . I am happy to be your buddy and discuss anything with you. Barbara

Me.sinclair
Member

Re: Starting Radiology April 2019

Hi Angie,

sorry for the late reply. I am having real problems with logging in to the site, have to reset my password every time.

i am sorry to hear you didn't receive the care and compassion you have every right to expect. This is such a difficult journey. When I had the first appointment with the surgeon she spent 30 minutes with my husband and me and then the BCN spent a further 40 minutes going through everything with us and answering our questions. The day surgery staff were also lovely.

 

when do you start your treatment?

 

My nephew has just had 39 sessions of radiotherapy (for prostate cancer). He said the hardest thing about it was the long drive to the hospital. It took him well over an hour each way. I am lucky in that for me the hospital is only 5 miles away and they have already given me my parking pass.

 

i must admit that this week has been good, no appointments, no watching for the postman for letters about appointments. Everything for the radiotherapy is in place and I will have another meeting with the oncologist at some point when she has the bone density scan results. I am more nervous about hormone therapy, you hear of so many possible side effects. But I know that some people have no side effects at all so I am living in hope that I am one of them.

Maureen

angie123
Member

Re: Starting Radiology April 2019

Hello Maureen

Our situations are similar - mine was also after a routine mammogram at the beginning of January.  I hadn;t felt anything, and indeed the surgeon coudn't feel anything externally.  I think I am actually still in shock.  I haven't really even cried yet!  However, unlike you, I don't feel that any of the medical professionals have been compassionate at all.  In fact, when I was on day stay for my surgery I was nervous, and the anaethetist asked me if it was the first time I had had an op.  When I said no, but I hadn't had to deal with the additional emotional impact of a cancer diagnosis before, he just said oh it's so common these days, nothing to worry about, and told me a story about his sister!  Not one single medic has asked me how I am coping, or looked holistically at all, and that has been a bit tough for me and the family really.  I fear I am waffling, apologies, but it is good to hear from someone that is in a similar situation - thank you, Maureen.  I hope your bone density scan goes ok on the 1st.

Me.sinclair
Member

Re: Starting Radiology April 2019

Hi Angie, this is my first post too! We seem to be in the same boat, lumpectomy and biopsy in February and radiotherapy starting in April. I start on April 8th. I had the planning appointment last Friday. I don't know yet about hormone treatment, because of my age (65) my oncologist is concerned about osteoporosis so I am having a bone density scan on April 1st.

Things seem to be straight forward for me too but it doesn't stop it being scary, does it? I think I have cried more this last few months than ever before. The diagnosis came as a total shock to me as it was following a routine mammogram in January. 

As a lot of people have said, it's the waiting that's the worst thing. Waiting for results, waiting for appointments, though I have to say that I am so impressed by the care and compassion I have received from every one in the NHS I have dealt with over the last scary 12 weeks or so.

Maureen

angie123
Member

Starting Radiology April 2019

Hello

This is my very first post, please bear with me.  I am starting radiotherapy next month, having had surgery in February.It would be good to chat to others in a similar position.  I had a lumpectomy and lymph node boipsy done.  There was some issue with the pathology results about future treatment, but I finally got those, and will be starting an unknown (as yet) hormone after radiotherapy. I realise others have had far worse, and I have been reluctant to post, but I could do with a friendly hand to hold, even though things are relatively straightforward for me physically.

Thank you.