69.3K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Research shows some older breast cancer patients could safely avoid radiotherapy

27 REPLIES 27
lavendersblue
Member

Re: Research shows some older breast cancer patients could safely avoid radiotherapy

I had chemo first Gayla , so my rads were about six months after my WLX , but if no chemo the surgery needs to have healed well before they do the rads it would seem . Length of time seems to depend on size and kind of cancer , plus lymph node involvement . Hope things go well for you .

Any further news Patsy ? I have sent you a private message , hope you found it .
Hugs,
Jill x

Jobey68
Member

Re: Research shows some older breast cancer patients could safely avoid radiotherapy

The amount of time you have it for will depend on the grade of your cancer I believe, minimum is three weeks but some I see at mine are there for 6-7 , mine started about 6 weeks post op once everything had healed up x jo
shayle
Member

Re: Research shows some older breast cancer patients could safely avoid radiotherapy

Hi Jo,

Thank you for your words of wisdom.  My surgery is the 29thMay and i am very calm right now and knowing that my surgery is in and out.  So it should go smoothly.  Good luck  with your radiology.  Does it start right after surgery and is it necessary for 6 weeks?

shayle

Jobey68
Member

Re: Research shows some older breast cancer patients could safely avoid radiotherapy

Hi Gayla, I'm currently going through radiotherapy after a lumpectomy and I can honestly say after my first week I've not had a single side effect so far, only having 3 weeks in total, it is only a few minutes of actual treatment and takes them longer to get you in the right position than to zap you! and no you do not feel a thing while it's happening, I know every one is different but I've not come across anyone yet who has said they have suffered anything more than a bit of sunburn type reaction from it , good luck with yours xx Jo
shayle
Member

Re: Research shows some older breast cancer patients could safely avoid radiotherapy

Hi everbody,

I am from the U.S. and I amm going to have surgery on the 29th.  I have lumpectomy, I think that is the word.  Then I am going to have radiation.  Is this painful?  I guess I will have fatigue and that is nothing to look forward to.  I must admit I am a little scared of it even though it is only 2 iutes according to the website.  If anybody out there is contemplating this or have been through it please tell me sbout your experience.  I suppose it is different for every person.   Gayla

lavendersblue
Member

Re: Research shows some older breast cancer patients could safely avoid radiotherapy

Hi Patsy , sorry to hear that you are facing this . All my scans and mammograms came back clear too , I was told the only way to tell was a skin punch biopsy , which I had and confirmed my diagnosis . I was also told I had to be treated by a specialist sarcoma unit , so I had to go to the sarcoma team in Leeds for my radical mastectomy , as my local hospital does not have a sarcoma team . I had my op in January .
Have they given you a date for your op ? Hope it is fairly soon for you .

I saw my oncologist three weeks ago , and he was concerned about a patch of bruising on my scar , so ordered another skin punch ... plus have found a lump in my remaining breast ...so core punch biopsy on that too . I get my results on Tuesday ...so really stressed out and aprehensive at the moment ...just keep thinking here we go again !!!
Hugs,
Jill xx

Patsysupport
Member

Re: Research shows some older breast cancer patients could safely avoid radiotherapy

Hi Jill back at hospital today and
this is the low down!! mastectomy is going ahead . No other cancers detected in body. MRI to breast not conclusive so it's either 1 not cancer 2 angiosarcoma AS 3 recurrence of first cancer. Dr believes it is AS.. Now focussing on op only as will not know anymore until they get it out and stare at it! 😡.
v frustrating as no true diagnosis but just have to focus on op for now. Thanks how r u? Patsy x
lavendersblue
Member

Re: Research shows some older breast cancer patients could safely avoid radiotherapy

Hi Patsy , so sorry to hear you too have been diagnosed with this horrid disease . Like you I thought it was just a bruise !!! So had mine for 4 months before I got my official diagnosis .... I had mammogram and ultrasound scan , but all came back clear !!! Luckily my surgeon was persistent in doing further tests .

Have you got a plan for treatment etc ? Do keep in touch .
Hugs,
Jill xxx

Patsysupport
Member

Re: Research shows some older breast cancer patients could safely avoid radiotherapy

I know how you feel I have just been told I have this and had all my previous treatment in Spain and don't recall being told this and have never heard of the word. It must be recognised that this is possible especially the symptoms as doctors thought I had bashed myself but my breast went purple yellow red swollen and doctors seemed foxed so I have already had it for over a month..
lavendersblue
Member

Re: Research shows some older breast cancer patients could safely avoid radiotherapy

Hi Gill , lovely to hear from you , and thank you for your kind and caring thoughts . I received my rads in 2009 , and am sure all aspects of treatments improve all the time . I was told I could have problems with my heart and lungs ( breast cancer on left side ) and that skin cancer was a real problem . Unfortunately angiosarcoma was never mentioned then , maybe because it is so rare .

It isn't a form of breast cancer but a cancer of the blood and lymph vessels ...so totally different and directly caused by the radiotherapy , but sadly far more aggressive. Because I was never warned or told what the symptoms might be , I totally ignored the first signs of bruising for too long . As more women have breast conserving surgery plus rads I am sure it will become more prevalent , so feel more knowledge is vital .

I saw the surgeon last week , who is pleased with healing of my wound but was reluctant to give me a prognosis , apart from saying it was not a good cancer to have and every case is different . LOL . Am just waiting for an appointment with the oncologist now , to see how my future monitoring will be done ... and what to watch out for . Some days I am really optimistic and others , I feel devastated . My fears of breast cancer were just beginning to fade from the front of my thoughts after five years..... Just goes to show we should never be complacent .
Hope you are keeping well and making great progress on your journey .
Hugs,
Jill x

ThePianist
Member

Re: Research shows some older breast cancer patients could safely avoid radiotherapy

Hi Jill

 

I haven't logged in for a while and I don't think I have come across you before, but I am really sorry to hear of your situation. This won't help your situation at all, I wish I could, but just to let you know that I had radiotherapy in August last year and at every meeting before I started it was repeated that there was a 1% chance of a second occurance of BC. It just goes to show that the facts are all out there, but the different health services seem to act differently. I am in Somerset and on one side of the county SNB is the norm, whereas on the other side they still do axilliary clearance as fairly norm. I think it depends where you live! I am very fortunate that my hospital seems to be ahead at the moment and their results take 7 - 10 days without fail.

 

I'm sure they will come up with a plan for you; I will certainly pray they do!

 

Gill 

lavendersblue
Member

Re: Research shows some older breast cancer patients could safely avoid radiotherapy

Good luck with your results on Tuesday Rose , hope they are good . I go the following Monday to see the sarcoma team leader , so will let you know how it goes and what ,if anything they have to say . I don't know if I am terrified or not !! Part of me is optimistic , yet so much of what I have read tells of poor outcomes and prognosis , that I know realistically it could be very bad news . Just have to live every day to the full .
I was brought up in Richmond ,North Yorkshire , but came to Bradford to go to college . OH was working in Liverpool , so when we married we chose to stay here for a couple of years . We are stil here 45 years later LOL .
Had to have my surgery in Leeds as they were the nearest specialist sarcoma team , breast team in Bradford not qualified to deal with it all , although the surgeon I saw there was on the ball enough to push for skin punch biopsy , thank goodness .
I have never visited the Haven , but hear it is a wonderful place . Might get there yet !!
Take care and all the best for Tuesday.
Hugs,
Jill xx

Rosemaryanne
Member

Re: Research shows some older breast cancer patients could safely avoid radiotherapy

Hi Jill

Let's hope they can give you definite news. I find all the waiting and uncertainty so very hard to deal with. I go back to find out if they got clear margins  next Tuesday. I'm currently convincing myself it'll be mx, so that I won't be disappointed at whatever they tell me.

I lived in Leeds for about 7 years in the 70s and would probably have stayed if not for something awful that happened which drove me back to Hull. I was in Headingley, and loved (most of) my time there. Worked in the city centre and also had a part time job at the New Inn on Otley Rd which helped with the rent. I was actually in Leeds last week at the Town Hall with my son to see Ocean Colour Scene. Apart from ALWAYS getting lost driving in, I love visiting Leeds, so much going on. You also have a branch of The Haven there, which I'm considering visiting for some of their lovely therapy.

I really hope they can give you some good news after all the stuff you've got to deal with

Lots of love, Rose xxxx

 

lavendersblue
Member

Re: Research shows some older breast cancer patients could safely avoid radiotherapy

Just adding have got an appointment with the sarcoma team in Leeds , on the 2nd March . Hopefully will be able to get more info on next steps an maybe even a prognosis .
Hugs , Jill xx

lavendersblue
Member

Re: Research shows some older breast cancer patients could safely avoid radiotherapy

I saw the link for the ' Knitted Knockers ' and have looked at the website , I even downloaded a pattern in case I got the urge to try knitting one . LOL .
I have also just ordered a ' Been a Boob ' from Nicola Jane , which is said to be more comfy than a prosthesis and a better weight than the comfies that the hospital give you when you leave . They are so light , they just ride up and look stupid if your remaining boob is on the well endowed side !!
Talking of Yorkshire , I also live in God's own county , what a coincidence .
Hugs,
Jill xx

Rosemaryanne
Member

Re: Research shows some older breast cancer patients could safely avoid radiotherapy

Hi Jill!

So pleased you made the wedding- it's lovely to get out of the medical scenario and have normal fun, isn't it?

I'm doing fine physically, still those awful prickly feelings, but pain has eased a lot. Waiting, however just does NOT get any easier! Distracting myself by getting involved with the Knitted Knockers group which were mentioned elsewhere on here- do you know about them? Take a look at their website and if you feel you'd like some, pop in an order. You never know, it could be me that makes yours! Feedback is that they are so much lighter and more comfortable than the prostheses given by the hospital. All free ( and you don't often get owt for nowt as we in Yorkshire would say!)

Please keep me updated on how you're doing. You've given me some valuable food for thought, and I appreciate that

Love, Rose xxx

lavendersblue
Member

Re: Research shows some older breast cancer patients could safely avoid radiotherapy

Hi Rose , just wanted to let you know I made the wedding and reception . Like you , I had had enough after the speeches and left before the disco started !!! LOL . It was a brilliant day and I was so glad that I made it .
I was shattered for two days after , but am coming round again now , although still suffering from pain in my scar area and having difficulty with bras !!
Hope you Are OK and coping with the wait for your path report.
Hugs ,Jill xxx

Rosemaryanne
Member

Re: Research shows some older breast cancer patients could safely avoid radiotherapy

Synchronicity! I was at my niece's wedding last Saturday. Enjoyed the ceremony and reception, but had to leave after the speeches, as was exhausted, Everyone who mattered understood. I'm feeling ok, easing off on the pain relief and taking gentle strolls in the cold but bright sunshine. Got a frustrating wait till 24th Feb for Path report. Everything crossed for good news for you. Take it easy at the wedding- no frantic jiving to the disco! Please keep me updated. Love Rose xx
lavendersblue
Member

Re: Research shows some older breast cancer patients could safely avoid radiotherapy

I understand the anxiety of the waiting times . I too am waiting ...lol . The sarcoma team is to have a MDT meeting to decide my next steps. As it is so rare ( only 1% of women develop this after radiotherapy ) they have fewer cases to judge what actually works than in other cancers. It may well be that the radical surgery I had on 13th may be it , or they may suggest chemo . I have been told it can return at any time so I presume they will follow me up at 3 monthly intervals , but am waiting to find out officially . Also need to ask for an official prognosis . There is little info about and what there is is depressing . Think I might start a thread on here to see if I get any more information .
As well as my left boob , they removed my chest muscle , so my op area feels numb and painful at the same time if that makes sense ??? They had to stretch my remaining skin to try and get clear margins , so I feel a bit like Quasimodo, hunched up , but am doing some gentle exercises and starting to do more round the house .
My Goddaughter gets married on Saturday , so aim to be there come hell or high water !!
Hope you too are feeling better after your recent op .
Take care ,
Hugs, Jill xx

Rosemaryanne
Member

Re: Research shows some older breast cancer patients could safely avoid radiotherapy

Hello again!

Mine were also picked up on a routine mammogram (4mm, the awkward one! and 7mm)- that moment when you amble in for the follow up, convinced it was a smudge on the film, and then faces turn serious all round is a real life-changer, isn't it?

Results here seem slow, slow, slow compared with other areas. Always at least 4 weeks to come through after every test/surgery, however I like to think that's because I'm a low priority compared with the more urgent cases.I had the 2nd op last Monday, so should find out if I'm clear in 3 weeks. I assume the hormone treatment and radiotherapy conversation will be held then, as long as they don't have to operate again.

I saw the lymphoedema connection when googling, but there's very limited information and more questions than answers as to cause and symptoms on the sites I checked. This site doesn't seem to have any references to it at all. What prognosis and treatment plan have they given you?

Thank you for the reassurance on the hormone treatment. I shall probably give it a try. If it's awful, and I know it might not be, then I shall reserve the right to stop taking it.

How are you feeling? Your surgery was very recent, I hope you're starting to recover?

Love, Rose xx

 

 

lavendersblue
Member

Re: Research shows some older breast cancer patients could safely avoid radiotherapy

My original breast cancer was picked up by a routine mammogram in 2008 . It was small only 6 mm , so I was never offered a mastectomy . However after my WLE it was found to have spread to my sentinel node so had to have an axillary clearance followed by chemo . Luckily I was offered a place on the Tact 2 trial , which means I am still being monitored .
Sadly after my axillary clearance I developed a seroma and then lymphoedema in my left breast , which wasn't helped by the later radiotherapy either. As lymphoedema can result in angiosarcoma on its own , I feel this is another reason why radiotherapy might have been questioned in my case . Unfortunately I only have learned of these facts now !!
I was also on Arimidex for 5 years and had no problems with it , if that is any comfort ( I was 60 when I started taking it , so we'll and truly post menapausal lol . ) In fact I only stopped taking it in June 2014 , and developed my angiosarcoma in Sept 2014 . I have wondered if that is merely coincidence . No one seems able to answer that .
When will you find out more about your next steps Rose ? Hope you don't have to wait too long.
Hugs , Jill xx

Rosemaryanne
Member

Re: Research shows some older breast cancer patients could safely avoid radiotherapy

Thank you, Jill

I've only been on this road for 3 months, so far 2 WLE for 2 grade 1 tumours, clear nodes, simples if they can get clear margins this time, if not Leftie will be off! But with every step forward there's more confusion. First time I saw my consultant I said I wanted a mastectomy- 2 tumours, in "awkward places"- but I was talked out of it, and was happy with her arguements against. Wish I'd stuck to my guns, as it's quite possible I'll end up with one anyway. They didn't seem too convinced they'd be able to clear it pre-2nd-op.

Part of me just wants to go along with recommendations, after all they're the experts, but the more I learn, the more I feel the need to question everything.So much happens with potential consequences. All this exposure to MRI and Mammogram "rays"- is that harmful? Radiotherapy? well, you know only too well about that one. Hormone treatment? I'm well past my 1st menopause (I'm 60) and it was hideous. My BCN told me if after 3 months I end up a gibbering wreck again, then that will be withdrawn, as it doesn't affect outcome that much. Now I'm asking myself, if it doesn't do that much good, why would I have to take it for 5 years?

I know I'm in a much better situation than many, many people on this forum, and I also know there are no guarantees with any part of the treatment for any of us, but my experience of going along what was thought best for me so far will ensure that I shall do a lot more research before committing to any futher course of action'

Please keep in touch, I would love to hear from you

Love, Rose xxx

 

 

lavendersblue
Member

Re: Research shows some older breast cancer patients could safely avoid radiotherapy

My only symptom was a large bruise , which I blamed on a belt buckle , hooking under my bra. A mammogram and ultra sound both came back clear . Luckily my breast surgeon was very thorough and did a skin punch biopsy , which unfortunately came back positive for angiosarcoma .
Had I been aware that the bruise was possibly not caused by trauma , I would have saught advice sooner . Luckily I took part in a chemo trial in 2008 which meant I am still seen annually by a breast surgeon . Had I not been a part of that things could be so much worse !!
I just wish there was more information given to us all on our treatment plans , with more choices and fewer decisions made on our behalves !!
Wishing you well Rose .
Hugs , Jill xx

Rosemaryanne
Member

Re: Research shows some older breast cancer patients could safely avoid radiotherapy

Hello

I am so sorry to read your post and I can feel your anger bouncing off the page. What a hideous turn of events, my heart goes out to you xx

This condition was completely off my radar, and google threw up very little information about it. Even the symptoms and watch-outs are very vague, but it is something I shall raise questions about before I commit to radiotherapy.

I thank you for raising awareness of this potential consequence of what is thought of as a routine part of BC treatment, and send you all best wishes for the future.

Love Rose xxx

 

 

 

lavendersblue
Member

Re: Research shows some older breast cancer patients could safely avoid radiotherapy

On the 24th Dec 2014 I was diagnosed with angiosarcoma , directly caused by the radiotherapy treatment I received in 2009 for my breast  cancer , when I was 60 years old  .

 

 

I am absolutely appalled that the treatment , meant to help has caused this dreadful new cancer . I was not warned of this , nor told what the symptoms might be , so did not know what to look out for .Neither was I consulted or given any choices . I was just told I was to have this treatment .

 

I had a radical mastectomy on the 13th Jan 2015 , which I am recovering from at the moment . It is very  agressive , will probably kill me and I am incandescent that  women are not warned of this danger that radiotherapy brings.

 

Although rare , as more women have wide local excisions plus radiotherapy the instances are growing and I feel that it should recieve more publicty , and women given the facts to make informed choices.

Anna_BCC
Member

Re: Research shows some older breast cancer patients could safely avoid radiotherapy

Dear Rosemaryanne

 

We do not have any particular details of ongoing research for us to share with you at the moment.  However, if you would like to talk about this more and how it affects you particularly, please do give our freephone Helpline a call, 9-5 Monday-Friday, 10-2 Saturday;  0808 800 6000. 

 

Best wishes for your upcoming treatment

 

Anna

Forum Coordinator

Rosemaryanne
Member

Re: Research shows some older breast cancer patients could safely avoid radiotherapy

Hi

May I please ask what age group this is targeted at?

I am 60 and have been told to expect radiotherapy as the next stage of treatment.

I would be happy to participate in any research if I fit the criteria

Regards

Rose

Nicole_BCC
Member

Research shows some older breast cancer patients could safely avoid radiotherapy

 

This research looks at options available to older women who make decisions concerning radiotherapy cancer treatment

 

We know sometimes it is difficult to share such information so if you don’t feel comfortable with it, you don’t have to participate. However, knowing your story and how you feel is important to us and might also help other women that are or will be in a situation similar to yours.

 

Please click here to find all the details.

 

Best wishes

Nicole

Forum Coordinator