69.4K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

November radiotherapy anyone?

daffodil
Member

Re: November radiotherapy anyone?

Hi everyone,

 

I had the last of my 15 normal ones yesterday. My skin is ok, a bit red and some wierd spots but not really painful. I've had a few twinges inside my breast, but not enough to bother with pain killers. Amazingly my tiredness hasn't been too bad. The first week was terrible as i was exhausted but since then its not been as bad. I thought it was supposed to get worse throughout but just goes to show that everyone is different.

 

Sue/beth - I completely agree with you both. On the first day my treated side felt warmer. Hasnt really happened since even though my skin is now red so i wonder whether it's just the shock of the first one.

 

My 3 targetted sessions were supposed to start today but when they practised last week I was very worried that they weren't hitting the right spot. Got myself all stressed out and kept questioning it. I was told by several radiotherapists that it was fine and basically felt i was being fobbed off but i stuck to my guns and today ky oncology consultant agreed to see me. He was lovely, really listened to my concerns and has agreed to extend the area of targetted treatment. I am so relieved! So they replanned me today instead of a treatment and i now have an extra appointment on friday. One more day before i finish but i'm so grateful as i now think it will be hitting the right area and i would have been so worried otherwise.

 

Hope everyone else is doing ok. Keeping 'cream'ing and drinking!

 

Aileen x

 

 

blueash
Community Champion

Re: November radiotherapy anyone?

Day 12 for me and I can just about see a faint square which marks the treatment area. It is so precise it looks like they have used graph paper on me! It is quite a bit bigger than my breast and extends a least 2 inches below my breast. Not at all sore or painful so far.

 

I have 3 more ordinary then 8 boosts.

Beth123
Member

Re: November radiotherapy anyone?

Got my first rads under my belt! 19 to go!! 

they were really lovely there today and it was good to see staff that I met on the open night they had in the unit before treatment started. They were very kind and even asked after my mum - although how they knew about her I have no idea. It's a different health board but I guess I must have mentioned it at some point. May be it came through on my notes from my hospital - they were keen there to see how I was coping with everything. So bloody complicated - mum treated in one hospital ( one in our home town), my breast clinic is in another hospital (centre of excellence for the area) and rads is happening in yet another hospital! 

Any way I'm rambling now lol. I've had my schedule through and same as everyone else, my times are all over the place. Tomorrow and thurs is at 8.15 am so boy that will be a very early start from the house and then Friday is 6.15 pm. Not going to know my arse from my elbow by the end!

probably my imagination but I'd swear my rads boobicle feels warmer than the other!! Maybe I have a flush coming on lol!! Xx

lizziecancerwarrior
Member

Re: November radiotherapy anyone?

Hi;

I live in Wisconsin, USA.  I am 57 years old and I just finished 33 radiation treatments for breast cancer on the right side. My doctors and nurses who had proven to be extremely diligent in their jobs remained somewhat, "general" on how to prepare and weather through the skin burn caused by radiation when compared to other treatments -in my opinion.

Since the day I was told that I was having radiation, I "Goggled" to see what I could find to assist me through it - especially the burning of the skin side effect.  What I found was a bunch of anything and everything.

So, having few strengths but one being resourceful, I began purchasing products and experimenting.  Please note that I did not do or use anything that my medical staff would ever object to – only all natural and never applying 4 hours or less prior to radiation… I continued to follow all the general rules.

  • Do not use or do anything that you haven’t discussed with your doctors or nurses first; they do know best.
  • Never apply 4 hours or less prior to a treatment – it could make it worse!
  • Start using whatever healing ointments you choose immediately; do NOT wait until you begin to feel the burn!
  • Loose cloths always and cotton not polyester if you are able.
  • If you are a woman wanting to wear a bra – don’t; at least every minute of the day you feasibly can. I found myself eventually comfortable going shopping and running errands without anything else to conceal what I was missing and at that point, I didn’t care because it felt so much better that way.

Also know that I was on a budget; yet I felt I needed to pursue any option. Some of the typical recommendations are:  What I started with was:

  1. Corn Starch – I typically use for making gravy…
  2. Organic Aloe Vera Gel - which in the ingredients list, I found to be a lot of other things along with some Aloe leaf juice. So if you have an Aloe Vera plant, use it!
  3. Vitamin E Topical Skin Oil - There are many versions, some very watery to some that are like glue but still worth consideration.
  4. Organic Coconut Oil – also many variations available and definitely worth consideration.
  5. Organic Calendula Oil – used but no determinations. The description of it is highly recommended for wound care but because it is quite strong, I only used it sparingly mixed in with any of the other products listed above.
  6. Miaderm – Very highly recommended and also very expensive. When I ordered on amazon.com, I paid $36.00 for a 4 ounce tube.  Instructions said apply 3 – 4 times a day; so logically, how long is my 4 ounces lasting?
  7. Aquaphor Healing Ointment Advanced Therapy – Not cheap but not expensive.
  8. CeraVe Healing Ointment - Because the Aquaphor was recommended and this tube was right next to it in that department, I decided to compare.

This is my final observations about these products as I tried them:

  1. Corn Starch – OK instead of using other approved deodorant but I personally didn’t see any other advantages of this and still do not.
  2. Organic Aloe Vera Gel – Good but limited in results. It relieved the initial heat and calmed the skin right after the treatment yet didn’t do much for overall healing.
  3. Vitamin E Topical Skin Oil – Good but limited in results.  It also relieved the initial heat and calmed the skin right after the treatment and through the following hours and night and may have assisted in the overall healing.
  4. Organic Coconut Oil – Good but limited in results. It also relieved the initial heat and calmed the skin right after the treatment and through the following hours and night and may have assisted in the overall healing.
  5. Organic Calendula Oil –I only used very sparingly mixed in with any of the other products listed above such as a bit mixed in with the Coconut oil but only used hours after the treatment.
  6. Miaderm – I used sparingly because it was so expensive. It had a slight burn when going on but faded.
  7. Aquaphor Healing Ointment Advanced Therapy - EXCELLENT. THIS IS WHAT I ENDED UP HAVING THE MOST SUCCESS WITH.   Their website is:  https://www.aquaphorus.com/?gclid=Cj0KEQiA08rBBRDUn4qproqwzYMBEiQAqpzns2e4lp6gBVfFxwOBgWUAh9kpCLM4J1... Make sure you use the Healing Ointment - NOT the cream version.
  8. CeraVe Healing Ointment – Ok; similar to Aquaphor but more expensive and heavier to apply to very sensitive skin.

So, here is where I go off the rails;  my creativity (in my mind only) decided the following would assist with the healing of these products:

I purchased,(any type of), food grade “Saran Wrap”  yes, yes I did.  I began experimenting on how, when, where and how much to apply in order to maintain the saturation of the cream or ointment for longer than just a few minutes of relief.  In addition, by using the wrap, I avoided the possibility of  the cream or ointment drying onto my shirt and when removing my shirt causing great pain as it remove several skin layers; (Yes, yes I did.)  If you apply cream or ointment and air hits it for a while, it creates a seal with your skin and clothing.  This is not what you want to experience.  Putting cream on without wrap is the best without any clothing over it until it has fully dried.

Lesson – If you do not use any type of wrap, do not wear anything that touches the cream or ointment until it is completely dry.  I am hesitant to display pics but I am willing to do so if requested.  The methods of applying the wrap are really a trial by error.  Radiation may be needed in any part of the body and then of course, the area can be varied in size and shape.  Therefore, all I can recommend is to apply enough wrap to cover the burn area with at least an inch or more outside of it.

This was an issue for me because my burn site was about the size of a business paper  8.5 X 11.  It began right where my left breast stopped and continued to the opposite side of my underarm; (yeah, I gave up on deodorant).

I started applying a few tablespoons of Aloe Vera to about a 10” X  15” cutout of wrap then folding it, putting it in a baggie and taking it with me to the treatment.   Before dressing to leave after the treatment, I applied the wrap – carefully – well, the best I could.  Yes, it squished out everywhere and I turned green but I had towels and a robe to wipe excess off.  So even the initial messy trials, I felt I achieved something.  I always read that the sooner you apply gel or ointment for burns, the better it will heal instead of leaving the burn fester.  So, I decided my 20 minute drive home after treatment was too long and would create more burn if left untreated.

As the days progressed I got smarter (of course, it took longer than most).  I figured out that instead of applying the cream or ointment directly  onto the wrap, I would bring a folded piece of clean, dry wrap along with the tube or tub of ointment or cream I was using for that treatment.  Immediately after treatment, while in the bathroom or dressing room at the hospital, I applied the ointment or cream to the burn area and slightly beyond.  Then I applied the wrap onto the area, wiped any residual off, dressed and I was off.

Once home, I would keep the wrap on for various lengths of time.  I found that if I left any of the creams or ointments on too long, they dried out and became harder to remove.  Although having done that, never did it hurt or remove skin.

I created a schedule; My treatment was at 11:00 AM; therefore, I would apply at the completion of the treatment about 11:30ish and leave it on for the afternoon.  If the skin felt good, I would remove the wrap and let it, “Air” until bedtime.  Then, at bedtime, I would apply the lotion or ointment with another wrap.  Some nights I removed the wrap sometime during the night and always before 7:00 AM; (4 hours or more prior to the next treatment).

I have read just a few of the blogs of angels going through this process in many varying degrees.  I am one of the luckier ones yet I feel a sincere need to assist anyone going through this part of their process.  I acknowledge that just like all of us, cancer is varied and surprising.  If you do want to contact me after this rambling, I have created a specific Gmail email for us to communicate.  I set up,  lizziecancerwarrior@gmail.com  if you would like to communicate knowing that I am not selling anything nor do I want anything from you. 

All of everything I did and recommended above is based on my own common sense.  Your own common sense must dictate what is best for you in this endeavor.  I am doing this because there wasn’t anyone out there for me to give me some additional crazy ideas.

God Bless and know that in some way, we were meant to go through this… which is such a bunch of crap.

--Lizzie Cancer Warrior

** UPDATE:  It has been 9 days since my last radiation treatment.  I continue to use only the Aquaphor but I find I need the wrap less and less – today I am only applying it right after my bath after I apply the Aquaphor.  I am healing much faster than anyone told me I would!

Dizzybee
Member

Re: November radiotherapy anyone?

Beth, I came out in spots with Tamoxifen as well. I've always been a bit prone, right up to the menopause, then finally got good skin till I started the Tamoxifen. But I think it's getting better, so maybe it's just a phase till your body adapts.  Just one more annoyance, sigh.

 

Good luck for tomorrow!

Cla46
Member

Re: November radiotherapy anyone?

Good luck Beth I'm sure it'll be fine xxx
Congratulations on your last one Kathy <3. I too feel all over the place I thought I'd be really happy to finish . Xx
Beth123
Member

Re: November radiotherapy anyone?

So first day of rads for me tomorrow. Finally begins again. It has felt like a lifetime has gone by since the lumpectomy at the start of September. 

Been taking tamoxifen for three weeks now and I am breaking out in spots everywhere - I'm 44 and not had pimples like these since my teens. Typically I have one in my armpit and I'm hoping it won't be an issue tomorrow. Fingers crossed my rads start as planned. 😬

Powdow
Member

Re: November radiotherapy anyone?

Dizzybee, my hospital said no creams also, on their leaflets and also when I saw the doctors beforehand. I wasn't looking forward to that, especially as I had a horrible allergic reaction prior to starting rads and had been using creams. When I mentioned to the doctor (or whatever title this person had) she said it didn't make any difference. Even if it didn't I would still want to use creams just to soothe the area.
However, when I got to my first rads, they gave me cream to use!!!! I also hear them saying to others "just keep using the cream" so I think it is like someone said, it is so they can recommend what cream as they won't want you using perfumed ones etc. Fine for us ladies in here who get plenty info from here and would have an idea what to use, but I guess there are plenty other women who wouldn't have a clue and go out and buy fancy creams.
I had number 8 today and no difference in my skin yet. It is a bit pink but it was pink before I started due to the allergy I had. So it hasn't got any worse since.
Sue C
Community Champion

Re: November radiotherapy anyone?

Dizzybee - only a slight feeling of sunburn, nothing sore. 

I asked about creams and they said just E45 cream and apply whenever. Shouldn't start feeling uncomfortable until second week. Also take in lots of fluids x

Kathy68
Member

Re: November radiotherapy anyone?

Last session for me today and I have to say I'm relieved it's over! Have found this last week really tough and tiring..skin has broken but feeling more comfortable with the pads the hospital have given me, found the treatment harder to deal with the closer I got to the end for some strange reason. As many have said we go through a whole range of emotions on this journey. Wishing you all lots of luck whether starting and finishing your rads, keep applying the creams! X
Cla46
Member

Re: November radiotherapy anyone?

Thank you Blueash your totally right, most of the time I'm fine but every now and again I falter it's so brilliant to be able to come on here and get support from others who feel the same xxxx
Sue I'm glad your first one went well. E45 is really good I use it 3 / 4 times a day to keep moisturised I also drink lots of water to rehydrate xx
Dizzybee that's good news about your planning appointment I'd ask about cream while your there sometimes I think places say no cream so you go don't buying loads then they can recommend what you need.I'll be thinking of you xxx
Lv Clair xx
Dizzybee
Member

Re: November radiotherapy anyone?

Sue C, it feels like sunburn already? The leaflet I was given for my hospital said no creams or ointments, it's funny how people get such different advice, some are using loads of moisturisers and others told not to use anything.

Dizzybee
Member

Re: November radiotherapy anyone?

Okay, much happier now, just got a phonecall saying my planning meeting is 8.30 tomorrow morning. So much for them insisting I didn't need one beforehand. But I'm still not convinced they know what they're doing, not even giving 24 hours notice.

 

Anyway, something is finally happening, and hopefully I'll have a confirmed date to start when I go in tomorrow.

Sue C
Community Champion

Re: November radiotherapy anyone?

Hi Ladies

Just wanted to say that I had my first treatment today and it's all fine. The nurses are lovely and the radiotherapy is painless. Probably took about 15 mins altogether because of all the markings that need doing and making sure that I was in the correct position but the actual 'zapping' only took 2 mins and didn't feel a thing. Now, at home, just feels like a bit of sunburn. They recommend e45 cream and said will give me some gel if it gets bad. Also said you will feel tired so take it easy.

Only 19 more to go!!

Dizzybee - I had to wait 8 weeks between surgery and chemo, but there didn't seem to be any concern about that. Do you have a breast care nurse that you can contact? When I was first diagnosed, mine were extremely helpful and were good at chasing up any delays xx

Dizzybee
Member

Re: November radiotherapy anyone?

blueash, I wish I did feel that there'd been this constant stream of appointments and an impetus to keep the treatment going. I had my last op on September 21st, since then had a 10 minute appointment with the surgeon to confirm the wound was ok, and 20 minutes with the oncologist in which he didn't read my notes, didn't discuss what the MDT had decided ( to take me off the Tamoxifen) and made clear the only point was to sign the consent forms for radiotherapy.

 

So ,I can't believe how slowly this has all gone, had the dodgy mammogram on June 8th and still don't have a confirmed date for radiotherapy. I feel like the invisible woman who is begging them to treat me and no one knows I'm here. That sense of abandonment you were talking about, that's where I am now.

blueash
Community Champion

Re: November radiotherapy anyone?

Cla46 it is the psychological aspect they mean.  You have been in active treatment - when you are seeing medical staff, keeping appointments, having blood tests, scans, biopsies, surgery, perhaps chemo, then daily rads etc. Doing all of that has kept you busy for weeks/months and now you may find yourself adrift because you probably won't need to see anyone for a while and your contact with medical staff will lessen drastically.

 

Your friends and family will expect you to be "over it all" and back to normal and yet you have been on a life changing journey and may never feel normal again. Or your idea of "normal" may change.

 

So to recap since you discovered all of this you have been surrounded by medical interventions, regular appointments and sympathy for ages (can seem like forever) now you may feel abandoned. So physically

you might be fine and dandy but psychologically, mentally and emotionally you might struggle. Here is the best place to come for solace if you feel that way. Family & friends don't get it and think you should be on top of the world because you have beaten cancer!

Cla46
Member

Re: November radiotherapy anyone?

5 more left for me. I'm planning to take a bit more time off to recover then I'm going to attempt going back to work on a phased return. I really just want to get back to normal but I'm worried about how I'll cope with the tiredness as my job is full on.
It's also the getting my head around it all everyone kept saying it'll hit me when rads gave finished, I thought I was doing ok but what happens next? Xx
Jas58
Member

Re: November radiotherapy anyone?

Just 6 to go now after 19 sessions . Just a bit red but sooo tired 😴 . Want my old energy back😨
Lily59
Member

Re: November radiotherapy anyone?

Hi Dizzybee,

I read your post and it really resonated with me. I think you really have to think of yourself right now and disregard a lot of what other people say. You don't have to be 'jolly and upbeat' if that is not how you feel. The sad thing is, as others have said, is that anyone who hasn't been through this can't understand the emotions and uncertainties that we have to deal with every day. Obviously that is not their fault but it is hard to deal with; even though they mean well. Personally I am trying to find the strength of mind to ignore much of what people say and concentrate on finding my own peace of mind, and doing things that make me feel better, even if they are only little things. This is a hard and wearing journey that we are all on and we have to do anything we can to cope with it.  Wishing you all the best xxx Lily

blueash
Community Champion

Re: November radiotherapy anyone?

Dizzybee,

 

I cannot bear the "think positive" types either! I had my last chemo 8 weeks ago and I feel back to normal more or less -  well physically anyway. I think emotionally and mentally it has had me in a low place quite often but I am coping with that as best I can. It makes you come face to face with your own mortality and that is something most of us never consider.

 
Those dark thoughts are there and apparently it is best not to shun them because it can make you mentally ill if you pretend you are fine and that you are dreaming about all of this serious surgery, medication  and radiation plus side effects. We have all been through life changing events and none of it is trivial. That is why I come to this site quite often - to communicate with people that "get it". As for  those that don't and think that I am exaggerating well I honestly hope that they never have to find out just what we are going through for themselves xxx
 
 
Dizzybee
Member

Re: November radiotherapy anyone?

Gosh Beth you're doing well to still be functioning at all! That is a heck of a lot going on.

 

I can really identify with you saying you're affected by what other people say, or how they expect you to behave. I find everyone wants me to be positive, I've always got to be jolly and upbeat, and sometimes that is damn hard. It's like I don't have permission to have bad days, to have fears about treatment or the risk of recurrence. I keep being told breast cancer surgery is nothing, the radiotherapy won't affect me at all, the Tamoxifen doesn't have side effects.

To be honest I'm avoiding a lot of people because it's getting a bit wearing. 

 

I'm very lucky because I don't work, I can't begin to imagine how much more difficult that must be. Take the time for yourself, ignore other people because they're not in your shoes. Either they've never been through this, or if they did and felt fine right through, well good for them but this isn't a competition. We need to be here for each other, not making pointless comparisons.

Beth123
Member

Re: November radiotherapy anyone?

Thank you Clair. 

After everything that's happened in the lead up to, and since diagnosis, you'd think I'd have learnt by now to put myself first! I am still far too worried what people think and maybe there's still an element of denial going on. At the end of the day, the timings I get on Tuesday may make work impossible and impractical anyway! 

I have had one hell of a year.....in January my father in law passed away from a brain tumour. In March, on my birthday, my mum was diagnosed with angioimmunoblastic Tcell lymphoma. She spent 5 months in hospital - 7 weeks of which in ICU and 4 weeks of that on life support having caught swine flu in hospital.  She's done well to still be here and has chemo round 5 coming up (although in A&E tonight with a temp). 

In August I had my BC diagnosis and last week my hubby was told his dept is closing and will be made redundant in April. No bloody wonder I'm exhausted!!! 

I think all of these factors are why my BCN & GP want me to take some time off for my own treatment. Running on empty will do me no good and I want to be as strong as possible to support my wonderful husband next year. 2016 has been a truly horrendous year so role in 2017!!

 

thank you everyone for your kind words and support. 

Much love

beth xx

Cla46
Member

Re: November radiotherapy anyone?

Sorry the appointment bit was for Dizzy bee, I was still thinking of Beth and the work question.
Beth it really does take it out of you travelling and the treatment don't feel bad about taking time off its no body else's business you have to do what's right for you. I find it hard to take time out I like to be busy but my team told me on Friday to let my body rest and recover. Lv Clair xx
Cla46
Member

Re: November radiotherapy anyone?

Evening lovelies,
Ali49 I also work in a school (special needs) and have been off since Sept, diagnosed in July with 2 lots of high grade Dcis so ended up with 2 WLES as.they wanted to get clearer margin, tamoxifen for the next 5 years and 15 sessions of rads that'll I finish next Friday & I'm planning to go back.on a phased return just before Christmas but I've learnt the hard way to pace myself so I'll see how I go.
Flopsy I'm glad your finding it all ok now I have a feeling we're at the same place in Taunton??
Beth I had my set up appointment 3 weeks before I started maybe different hospitals do it differently?
Good luck to everyone starting or continuing tomorrow near or far lv Clair xx
SteveJill
Member

Re: November radiotherapy anyone?

I am starting my radiotherapy on Monday in Gran Canaria. Just want to get this done and dusted and put all this behind me. Diagnosed July, lumpectomy in August and now for radiotherapy. Glad I have my lovely interpreter to tell me what's going on as not understanding makes it a little more scary.
Ali49
Member

Re: November radiotherapy anyone?

Hi all! It has been helpful reading through this thread. I was diagnosed with high grade DCIS on 7th September and a WLE and cavity shave later, clear margins have been achieved and I am now waiting to start 15 sessions of radiotherapy. I have been off work since my diagnosis and my BCN said working in a school made it more likely to catch bugs, infections etc so not to go in. I have an appointment with oncology on Wed 23rd to talk about my radiotherapy plan and find out when the planning will take place and the 15 sessions. I am really hoping it will all be done and dusted by Christmas and I can go back to work afterwards. I have had excellent care at Aintree Breat Unit and feel very lucky that the hospital is only 10 minutes away. I am full of admiration for you all and especially those working whilst going through treatment x
Dizzybee
Member

Re: November radiotherapy anyone?

I've never come across anyone who didn't have a separate setup appointment so I'm baffled, but my husband is adamant that's what they told him, they are going to run it all together. So I assume that means setup one day and the start of radiotherapy the next. Perhaps they have the oncologist on speed dial to do the diagrams or whatever!

 

I'm feeling like the invisible woman, I only know anything about the plan for radiotherapy because my BCN rang to ask what was happening, and then when no letter came my husband rang. I expect I should sit quietly and wait for them to tell me what's happening, but it is so stressful knowing it will be a three week chunk of my life and I need to know to make plans. The travel time to the hospital is about an hour allowing for the car parking etc.

 

Anyway I will have to contain my impatience a bit longer, maybe I'm being unreasonable in expecting more than nine days notice.

 

 

 

sar54
Member

Re: November radiotherapy anyone?

Congratulations Flossy 👏🎉🍹

 

I'm a week on from rads and only a little more pink but a sore throat has turned into a stinker of a cold, just what I needed, not.

 

best wishes everyone x

Flopsy
Member

Re: November radiotherapy anyone?

Hi Dizzibee,

 

I had to go into the clinic before my rads started for a CT scan and to be tattooed. The CT scan (they said) needed to be sent to my consultant to write the radiaition plan for my treatment. It took about a week for me to start after that. Wouldn't have wanted to start straight away as I had an allergic reaction to the tattooing ink and they turned into large angry red itchy lumps. Had to wait intil these settled. 

 

It may be that they can do all of this in one session but it would be maybe worth asking your husband to ring back and see is a gap needed after all. 

 

Peak side effects for me are expected in week 4 and then the 2 weeks after that when I have finished treatment.. or so I have been told...

Janey2
Member

Re: November radiotherapy anyone?

Flopsy, not sure if throats/gland same problem I have but maybe worth checking out with GP. Can be a side effect both of rads and hormone treatment. I've been given some medication to try and resolve, as swallowing painful x
Flopsy
Member

Re: November radiotherapy anyone?

Thanks Cla46,

 

I've survived my second week and you are so right - it goes quickly once started. Not just the end of a week came quickly but each session was quicker.

 

I think having the same team for most days helps with this. On day 1 it seemed to take forever to get me lined up and in the right position to start the zapping. Now they can line up my dots really quickly and I am out of there in no time at all. 

Flopsy
Member

Re: November radiotherapy anyone?

Thanks Janey,

 

I managed to calm my nerves a little and sleep. Now completed 5 out of 20. All going well except from exhaustion and a sore throat / glands etc now. Resting up for next week.

Janey2
Member

Re: November radiotherapy anyone?

There's a bell ringing over the border in Devon for you Flossy! Congratulations x
Flossy03
Member

Re: November radiotherapy anyone?

Well that's me done. I've finished being zapped. 15 sessions all finished with no side effects apart from a slightly pink boob but nothing to worry about. For me it's been a positive experience but glad it's all over and done with - I can't praise the team at Musgrove Hospital enough but do hope I don't ever have to see them again 😀 For anyone just starting good luck, it's not as bad as you might imagine and the times goes quickly once you get into the routine - don't take too much notice of "Google" as a lot of it is very inaccurate! Remember we are all individuals and react to things differently - keep positive, drink plenty of water and moisturise loads. Much love to everyone ❤️
blueash
Community Champion

Re: November radiotherapy anyone?

Dizzybee, I would think you would have a planning session at least a few days before your treatment because they have to plan it according to your measurements. While we all get a similar sounding plan 15 or 20 or 15 and 5 boosts or whatever.

 

Plus if it is your left side they have to instruct you about breathing. A deep inhalation moves your heart away from the treatment field and you have to be able to hold your breath for 20 seconds. If you can't they might have to shield you.

blueash
Community Champion

Re: November radiotherapy anyone?

Beth, I had chemo before rads so for me the rads are easy by comparison. It is the travel and the routine that wears you out so if you can take time off then do so. If taking time off is difficult or unaffordable then work at the beginning and not towards the end.

 

If you could go in half and hour later or leave half an hour earlier and your jouney was on your way to work or on your way home then yes you might be able to fit it in. If you have hours of travel time then it is not feasible or easy to accomplish.

 

I am going by public transport and standing around in cold windy weather at 7 am is hard work when you are recovering from surgery and chemo and those that have not "been there and done that" are in no position the have an opinion on what we should or should not be able to cope with. So don't be brave, don't manage or cope if you don't want to. Have the time off and be kind to yourself xxx

Janey2
Member

Re: November radiotherapy anyone?

Beth, Rubycat is very right. Take the time you need. It can be a tiring time and we are all so different. Be kind to yourself xx
rubycat
Member

Re: November radiotherapy anyone?

Hello Beth, sorry to butt in, but really think you need to listen to all those professionals!!  Travelling for 3 hours daily (as you have got to come back as well!) is exhausting for anyone, let alone for someone having gone through what you have already gone through.  Going back to work after 3 weeks sounds pretty early to me too. If you are already exhausted, I think you already know the answer .,....  Please be kind to yourself and put yourself first.  Some people might be able to work through rads, do marathons, cook cordon bleu meals and sail through it all, and that is wonderful for them, but if that is not you, don't push yourself.  You definitely will be tired through rads, it just creeps up on you, and can continue long afterwards. So look after number one. Good luck. RubycatCat Very Happyxxx

Beth123
Member

Re: November radiotherapy anyone?

Can I ask your opinion ladies?

as I've mentioned, my rads start on Tuesday (15 & 5) and I was planning on taking the whole time off from work during this treatment. The hospital is no where near where we live - we've timed it and getting there during the day, door to door is about 80 mins each way, peak time of day and it's even longer. 

Im already exhausted after going back to work probably too soon (3 weeks after surgery) and I'm worried that if I push myself further to work the hours we are not on the road, by Christmas I'll have burnt out completely(pardon the pun). 

Lots of people have told me that they worked all the way through rads and look at me weird, as if I'm taking the mick when I say I won't be. Surely we are all different? My BCN , GP and counsellor want me to take the time off and they know me better than anyone. Why then do I feel guilty? Why am I letting these people make me feel like I'm being lazy? 

Not a happy bunny this evening. 

PS still have my cold which isn't helping. Booooo

sorry for ranting!!

 

Dizzybee
Member

Re: November radiotherapy anyone?

Well now I'm a bit puzzled. I've been pushing for a date for the start of radiotherapy for ages as things seem to have drifted along at a snail's pace. So three days ago I was told I was pencilled in to start on November 30 the and would get a letter with a date for the set-up appointment about ten days beforehand.  So far no letter, so my husband rang up again today, they told him I was definitely starting on the 30th but there was no separate setup appointment.

So that sounds like the setup and the radiotherapy run together, I thought there was usually at least a few days between the setup and the start of radiotherapy proper.

 

I know it sounds like I'm keen to get started, but apart from anything else I have Christmas to plan, it sounds like we'll be running up to December 21st. I have several lunchtime events I need to know whether I can make them. It's not the best time of year to be having peak side effects....

 

 

 

Janey2
Member

Re: November radiotherapy anyone?

Woohoo and happy Friday. Enjoy peaceful weekends. Powwow the GP has said not tonsillitis but a side effect of either Rads or Anastrazole 😩 I've been given some tablets to try. X
Cla46
Member

Re: November radiotherapy anyone?

Woo hoo second week of rads done and all is going well they said they're pleased with my skin and it's all looking good. only 5 more sessions to go and then I'll be on the home run 😉 xx
Congratulations Flossy on finishing your rads today wishing you all the best with your future xxx
Have a restful weekend everyone lv Clair xx
Powdow
Member

Re: November radiotherapy anyone?

Hi Janey, that's such a shame especially as your are two weeks finished, you'd expect things to be improving. Here's hoping it clears quickly.
Janey2
Member

Re: November radiotherapy anyone?

Hi. Thought I'd update on fluey feeling. Over the last few days I've had an increasingly painful throat, painful to swallow but deep in the throat. I saw my GP who says it can be a common after effect of both radiotherapy and also a side effect of the Anastrazole - we are monitoring and I have some drugs to try - deep joy. X
Lena Mary
Member

Re: November radiotherapy anyone?

Thanks, Clare.  I realised after I sent the question what it was.  I had the same thing and though I had to go back to theatre again the day after my op it was to remove a large blood clot.  As you well know, it's no fun being opened up again.  Wouldn't have minded so much but have been in misery for the  past 4 weeks with a bad breast  infection.

 

Hope  you are well on the way to recovery.   

Lena Mary  xx

Cla46
Member

Re: November radiotherapy anyone?

Oh Lena I've just re read my earlier post I ment excision cut not excursions ( I did laugh at a wide trip :-D.)
Beth that's great news, the quicker you start the quicker it's over. I've got very sensitive skin and was really worried but I'm half way through now and I haven't had any skin problems yet I'm sure you'll be looked after very well xxxxx
Sending love and best wishes to everyone else and best of all its nearly Friday xxxxxx
Beth123
Member

Re: November radiotherapy anyone?

Hi ladies 

had an unexpectedly early call from hospital today and I'm starting rads on Tuesday next week and not on the 2 December as originally thought. Caught me off guard a little that's for sure. Feeling a little mixed - happy the next step is so close, but apprehensive too. I've suffered with my skin on and off since childhood and still get a little eczema on my shoulder blades so I'm a bit worried how I'll get on. I'm sure they'll keep a close eye on me. Here we go now! X

lizziecancerwarrior
Member

Re: November radiotherapy anyone?

Hi;

I live in Wisconsin, USA.  I am 57 years old and I just finished 33 radiation treatments for breast cancer on the right side. My doctors and nurses who had proven to be extremely diligent in their jobs remained somewhat, "general" on how to prepare and weather through the skin burn caused by radiation when compared to other treatments -in my opinion.

Since the day I was told that I was having radiation, I "Goggled" to see what I could find to assist me through it - especially the burning of the skin side effect.  What I found was a bunch of anything and everything.

So, having few strengths but one being resourceful, I began purchasing products and experimenting.  Please note that I did not do or use anything that my medical staff would ever object to – only all natural and never applying 4 hours or less prior to radiation… I continued to follow all the general rules.

  • Do not use or do anything that you haven’t discussed with your doctors or nurses first; they do know best.
  • Never apply 4 hours or less prior to a treatment – it could make it worse!
  • Start using whatever healing ointments you choose immediately; do NOT wait until you begin to feel the burn!
  • Loose cloths always and cotton not polyester if you are able.
  • If you are a woman wanting to wear a bra – don’t; at least every minute of the day you feasibly can. I found myself eventually comfortable going shopping and running errands without anything else to conceal what I was missing and at that point, I didn’t care because it felt so much better that way.

Also know that I was on a budget; yet I felt I needed to pursue any option. Some of the typical recommendations are:  What I started with was:

  1. Corn Starch – I typically use for making gravy…
  2. Organic Aloe Vera Gel - which in the ingredients list, I found to be a lot of other things along with some Aloe leaf juice. So if you have an Aloe Vera plant, use it!
  3. Vitamin E Topical Skin Oil - There are many versions, some very watery to some that are like glue but still worth consideration.
  4. Organic Coconut Oil – also many variations available and definitely worth consideration.
  5. Organic Calendula Oil – used but no determinations. The description of it is highly recommended for wound care but because it is quite strong, I only used it sparingly mixed in with any of the other products listed above.
  6. Miaderm – Very highly recommended and also very expensive. When I ordered on amazon.com, I paid $36.00 for a 4 ounce tube.  Instructions said apply 3 – 4 times a day; so logically, how long is my 4 ounces lasting?
  7. Aquaphor Healing Ointment Advanced Therapy – Not cheap but not expensive.
  8. CeraVe Healing Ointment - Because the Aquaphor was recommended and this tube was right next to it in that department, I decided to compare.

This is my final observations about these products as I tried them:

  1. Corn Starch – OK instead of using other approved deodorant but I personally didn’t see any other advantages of this and still do not.
  2. Organic Aloe Vera Gel – Good but limited in results. It relieved the initial heat and calmed the skin right after the treatment yet didn’t do much for overall healing.
  3. Vitamin E Topical Skin Oil – Good but limited in results.  It also relieved the initial heat and calmed the skin right after the treatment and through the following hours and night and may have assisted in the overall healing.
  4. Organic Coconut Oil – Good but limited in results. It also relieved the initial heat and calmed the skin right after the treatment and through the following hours and night and may have assisted in the overall healing.
  5. Organic Calendula Oil –I only used very sparingly mixed in with any of the other products listed above such as a bit mixed in with the Coconut oil but only used hours after the treatment.
  6. Miaderm – I used sparingly because it was so expensive. It had a slight burn when going on but faded.
  7. Aquaphor Healing Ointment Advanced Therapy -   THIS IS WHAT I ENDED UP HAVING THE MOST SUCCESS WITH.
  8. CeraVe Healing Ointment – Ok; similar to Aquaphor but more expensive and heavier to apply to very sensitive skin.

So, here is where I go off the rails;  my creativity (in my mind only) decided the following would assist with the healing of these products:

I purchased,(any type of), food grade “Saran Wrap”  yes, yes I did.  I began experimenting on how, when, where and how much to apply in order to maintain the saturation of the cream or ointment for longer than just a few minutes of relief.  In addition, by using the wrap, I avoided the possibility of  the cream or ointment drying onto my shirt and when removing my shirt causing great pain as it remove several skin layers; (Yes, yes I did.)  If you apply cream or ointment and air hits it for a while, it creates a seal with your skin and clothing.  This is not what you want to experience.  Putting cream on without wrap is the best without any clothing over it until it has fully dried.

Lesson – If you do not use any type of wrap, do not wear anything that touches the cream or ointment until it is completely dry.  I am hesitant to display pics but I am willing to do so if requested.  The methods of applying the wrap are really a trial by error.  Radiation may be needed in any part of the body and then of course, the area can be varied in size and shape.  Therefore, all I can recommend is to apply enough wrap to cover the burn area with at least an inch or more outside of it.

This was an issue for me because my burn site was about the size of a business paper  8.5 X 11.  It began right where my left breast stopped and continued to the opposite side of my underarm; (yeah, I gave up on deodorant).

I started applying a few tablespoons of Aloe Vera to about a 10” X  15” cutout of wrap then folding it, putting it in a baggie and taking it with me to the treatment.   Before dressing to leave after the treatment, I applied the wrap – carefully – well, the best I could.  Yes, it squished out everywhere and I turned green but I had towels and a robe to wipe excess off.  So even the initial messy trials, I felt I achieved something.  I always read that the sooner you apply gel or ointment for burns, the better it will heal instead of leaving the burn fester.  So, I decided my 20 minute drive home after treatment was too long and would create more burn if left untreated.

As the days progressed I got smarter (of course, it took longer than most).  I figured out that instead of applying the cream or ointment directly  onto the wrap, I would bring a folded piece of clean, dry wrap along with the tube or tub of ointment or cream I was using for that treatment.  Immediately after treatment, while in the bathroom or dressing room at the hospital, I applied the ointment or cream to the burn area and slightly beyond.  Then I applied the wrap onto the area, wiped any residual off, dressed and I was off.

Once home, I would keep the wrap on for various lengths of time.  I found that if I left any of the creams or ointments on too long, they dried out and became harder to remove.  Although having done that, never did it hurt or remove skin.

I created a schedule; My treatment was at 11:00 AM; therefore, I would apply at the completion of the treatment about 11:30ish and leave it on for the afternoon.  If the skin felt good, I would remove the wrap and let it, “Air” until bedtime.  Then, at bedtime, I would apply the lotion or ointment with another wrap.  Some nights I removed the wrap sometime during the night and always before 7:00 AM; (4 hours or more prior to the next treatment).

I have read just a few of the blogs of angels going through this process in many varying degrees.  I am one of the luckier ones yet I feel a sincere need to assist anyone going through this part of their process.  I acknowledge that just like all of us, cancer is varied and surprising.  If you do want to contact me after this rambling, I have created a specific Gmail email for us to communicate.  I set up,  lizziecancerwarrior@gmail.com  if you would like to communicate knowing that I am not selling anything nor do I want anything from you. 

All of everything I did and recommended above is based on my own common sense.  Your own common sense must dictate what is best for you in this endeavor.  I am doing this because there wasn’t anyone out there for me to give me some additional crazy ideas.

God Bless and know that in some way, we were meant to go through this… which is such a bunch of crap.

--Lizzie Cancer Warrior

daffodil
Member

Re: November radiotherapy anyone?

Hi powdow,

 

I am 12 down, 6 to go today. I was exactly like you in the first week - very tired (and emotional), plus i felt like i was fighting off a cold and i was worried as i thought it would get worse. The good news is i was actually less tired in my second week. For me, i think the emotional relief of the end of a long wait for rads and then the nerves from starting rads when i wasn't used to it was exhausting. By the second week I was more in the routine of the rads appointments and started resting a bit more but felt much less tired. This week am a bit more tired again but not too bad.

 

Hopefully this will be the same for you. If you feel a bit hungover you might need to drink more. I have been drinking loads and i think it helps with tiredness and skin symptoms.

 

Wishing everyone luck with the continued frying.

 

Aileen x

 

Cla46
Member

Re: November radiotherapy anyone?

Hi Lena, it's a wide local excursion it's where the surgeon cuts out the diseased area with hopefully a clear margin of tissue. I had to have 2 ops because my first clearance was 2mm and it wasn't enough there was still some cancer left so.then they took 9 mm more to make sure it was gone 🙂 xx