Need to decide if I want Radiotherapy

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Hi
I had a left side mastectomy in June. I had 2 tumors, one 4cms and one 1 cm. They were HER2 positive. I am about to have my last chemo session next week. I have had 3 FEC which were fine and will have my third Docetaxel session Thursday, which has not been fine! I have struggled with these last treatments which have lead to a raft of meds to overcome side effects and side effects of side effects. I really feel I have now had enough and just want my life back and to feel well again. I am having a year of Herceptin. Now I have to decide on Radiotherapy.
The oncologist has said it is unproven whether people in my position benefit - not helpful! I have a history of breathing issues so the prospect of lung damage worries me. Herceptin can lead to heart failure and I already had high blood pressure so the prospect of heart damage through radiotherapy doesn’t appeal either. I understand this therapy can only be done once. My gut feeling is I don’t want it now. The Herceptin should halt further growth, the op should have taken active cells away and chemo should have killed anything left. Herceptin poses a risk that I don’t really want to add to. If I don’t have it now, then should the cancer come back, I have this therapy in the armoury to fight it. However, I worry that my decision is being led by the fact that 5 months down the line my chest wall is still uncomfortable, that I hate the way it looks - there is still fluid to go - and I don’t want more discomfort which is only a short term gain.
I am so fed up with feeling unwell and want to put this behind me, go back to work and get a life! Neutropenia has meant I have not really been out for weeks and in cough and cold season havent even seen my Grandchildren since early October! I want to join the world and celebrate Christmas, not feel like the burnt bird at the table!

Kahren

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Hi Kahren,

Could I suggest you give the helpline team here a ring they’ll be only too happy to talk this through with you. Lines open on Monday morning at 9am - 5pm, calls are free 0808 800 6000.

Take care,

Jo, Facilitator

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Thanks Jo - this is on my list to do but I wanted to hear from others too.

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sending hugs, sounds like you are having an awful time, Sometimes, just sometimes, even though it is your body, dont you just wish the medics would make decision for you?
Hope you feel better soon, and which ever treatment route you take you have a good result.
I know how much you must be missing your grandchildren, as I get withdrawal symptoms if I dont see mine every week ! xxx

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Dear Kahren,
I had the same decision to make as you. I had a right mx and axillary node clearance in July 2010 , then FEC T Chemo and of course 5 years of Tamoxifen. I did a lot of research about the Rads as I truly did not want it like you. I had a spinal fusion at 14 and my rib cage is slightly pushed forward so I was scared of my ribs breaking. Like you I have asthma and have to take 3 inhalers so I made the decision NOT to have Rads. My Oncologist phoned me at home to check she had got the information right as it was her Registrar when it was my appointment and final decision. I explained that I had thought long and hard and was keeping the Rads in reserve in case the Cancer came back as like you say you can only have it once. I was happy with my decision as I was a borderline case with only 3 nodes involved , so they did not know whether it would benefit me or not. Once I had made my mind up I was focused on getting better and not worrying about " what if " I hoped that everyone respected my decision and did not pressurise me to have it, in fact my cousin in Aussie told me that she agreed with my decision so that was comforting as she was a ward sister a few years ago in Scotland.
So it is your decision, your body and you are in control!! I know it is not easy, I must have drove everyone crazy when I was making my mind up but you will get there. Sending you love and positive vibes. Let us know what you decide . Love Tracy xxx

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Hi, I think it is always very difficult deciding whether or not to have a particular cancer treatment, usealy when a treatment is offered it will all boil down to the Risk Vrs Benifit for an individul patient, their own particulat cancer dx, and whether or not they have any other exsisting health problems.
Radiotherapy today is planned very presisely, and in the vast majority of cases radiotherapy will aviod or will at least keep to an absolute minimum any areas such as the lungs or heart out of the radiation field, haveing said that , of course there will always be a slight risk, but this is also true of all other cancer treatments.
I think the thing to maybe consider is ,and proberly most importantly is that radiotherapy helps cure cancer. It’s second to surgery in its success in curing the disease, and while chemotherapy and new kinds of other targeted cancer drugs are often featured in the media, radiotherapy has frequently been the forgotten hero of cancer treatment according to cancer research uk .
I understand how hard it is sometimes as we are all faced with difficult choices and they are often not easy to make, i also understand about wanting our lives back , im currently going through cancer tretments again and have just finished radiotherapy for the 2nd time , am also haveing Herceptin, for a new primary in my opposite breast 5 yrs on from my origional dx.
I would say have a chat with your med team about all the pros and cons ,and then you will be more able to weigh up whether the actual risk/benifit of adding radiotherapy as a further treatment is worth it for you personaly, you could as others have said ,keep radiotherapy as another option in the future if needed , though obviously the best chance of cureing a cancer is usealy the first one .
All the best to you in whatever you decide, i think its a very personal decision regarding any of the cancer treatments ,and whatever decisions you make will be the right one for you.

Linda x

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Thank you for your comments. It is reassuring to hear from others. I am going to talk it through with the helpline today. I have discussed it in the family and they understand that if I dont go for it it will be after a lot of heart searching. If I knew it would be worth it it might be diffrent but having been told it might not benefit me…I dont know.
Good luck to you all in your treatments and thanks for your support. I will post when I have made my mind up!
Kahren

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KahrenQ I’m not going to beat about the bush, because as someone living with secondary cancer it infuriates me when people like you refuse treatments that could potentially save them. The fact is you have cancer, and you have to do everything possible to stay alive. Of course these treatments are often horrible, and have potentially serious side effects. But having secondary cancer would be far more horrible, and doctors do not provide life threatening treatments and then just keep their fingers crossed. If you go ahead with Herceptin for a year, your doctors would carry out an echo cardiogram before every fifth infusion to ensure that your heart is not suffering (and if it was suffering, they would stop treatment). Similarly radiotherapy is carefully planned to protect healthy tissue (and radiotherapy to the mx site is pretty standard anyway).

You say “should the cancer come back, I have this therapy in the armoury to fight it”. This suggests to me that you think any recurrence would be local and therefore still potentially curable - which is I think is a big mistake. If there are any stray cells left, which have not been removed by surgery, or destroyed by chemotherapy, they could metastasize to anywhere in your body, and then you would have no chance of a cure (no matter how many treatments you have in the armoury). Also you should perhaps consider that Her2 receptive cancers are usually more aggressive than ER+ cancers, and so it’s not an adversary you want to toy with.

I think you should be aware that chemotherapy does not usually destroy all cancer cells (and endocrine therapy simply prevents cancer receiving stimulus to grow). Therefore it is important to try and mop up any cells that have not been removed by surgery or destroyed by chemo, and this is where radiotherapy comes in. Radiotherapy is the only treatment known to man, that can actually destroy cancer cells, when given at a curative dose (which is what you would be given).

Finally, I think your fears are unfounded. Most who have had radiotherapy to the MX site, will tell you that the treatment is easy compared to chemo. You would probably feel a bit tired, and possibly have a feeling of sunburn towards the end of treatment. So basically (and I mean this in a kind way), you’re almost over the worst treatment, so stop being such a wuss and get on with the rads

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Hi Karhen
I had my mastectomy in April 2011 followed by chemo - 3 Fec and 3 docetaxels then 15 rads and a years worth of herceptin which I finished at the end of Sept 2012. My lymph nodes were clear.
I was told that I could opt to take part in trials as it has been found that of 10 women receiving the ‘belt and braces’ treatment of radiotherapy to prevent a re-occurrence, only 1 in 10 actual needs it, and the other 9 receive it needlessly. I decided that as I had been unlucky enough to be the ‘1 in 8’ who had developed breast cancer I did not want to be the ‘1 in 10’ who afterwards develops it yet again! I took all the treatment I was offered as nobody has a crystal ball to know that the future holds for them.
As far as the risk to my heart was concerned I received no less than 6 muga-scans whilst on herceptin - you are so well monitored for any adverse effect on your heart that you are probably in a much better position than most of the rest of the population who have no ideas what health problems are lurking inside their bodies.
Good luck with whatever decision you come to - my oncologist told me that there are no guarantees on anything in life, but that they have given me all the treatments that they could and I have done everything I could in receiving them so no trusting to luck for me!

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Lemongrove - I am only a primary lady, but I couldn’t agree more with you

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Hi Karhen,

Life is too precious to play guessing games. Us secondaries ladies know to our cost as we know too well how precious the gift of life is. I personally would not take chances, the arguments for rads which Lemongrove states are real and applicable to you. Rads is a doddle compared to chemo, I have severe lung damage from previous pnemonia so was a bit worried…but they keep an eye on you and I’d rather live a bit longer wheezing my way up the stairs than the alternative…

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Lemongrove you have opened my mind to weighing risk against benefit.
I have a primary cancer to right breast (1.6cm in one place) and no lymph nodes affected. Now I am having an operation soon followed by a course of radiotherapy. Up to here I am fine with it all. I was weighing up the benefit of having chemo against not having it… I cannot have hormone treatment as my cancer type is oestrogen and progesterone negative, so hormone treatment wont benefit me. I was hinted by the cancer nurse that I will be advised to have chemo after my op. My first reaction was Oh no I don’t want it if I don’t really need it!
Having read all your stories and dilemmas, I think that 5 or 6 monhs of chemo and side effects must perhaps outweigh my fear of what it is going to do to my body (especially attacking the healthy cells) and having side effects. Is there anyone out there in the same dilemma as me, wanting perhaps to stop after radiotherapy and not sure about chemo?
I suspect not many but I would be very interested in what you might have to say to my dilemma. Please! Are chemo side effects not too bad after all or different for some? Is hair loss a definite? I am scared!!!
m-c teacher xxx
kahren thank you for opening this discussion as it is exactly what I was after and good luck in you decision making as hard as it is, I am with you and sending you positive vibes xx

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Hello

I was very interested to read your post as it is a decision I have started to look at myself.

Last friday,(9th November 2012) I had a Wide Local Exclusion/ All went well. I havbe had no problems and have very little pain, but I know that I will soon be told the next step is radiotherapy. I use the word ‘told’ because that is exactly what happened when I was diagnosed. I was told what would happen, and, just as I was getting over the shock of the diagnosis, news reports proclaimed that in the next few months plans were to be put into place that women were to be told all available options, etc.

My concerns have been about the quality of my life (both in respect of radiotherapy and hormonal treatment side effects) and the fact that I cvan find very little evidence about whether having radiationactually stops the cancer coming back or not, or whether the treatment itself sets me up formore cancer (possibly at different sites) in the future.And then allthose hormones for five years?? For the last ten years I have suffered from Chronic Fatigue Syndrome(CFS). I have been told the fatigue I might experience is likely to be more intense and long lasting than for women without CFS. Im afraid that I consider that whilst it might be ‘do-able’ (A word I have often seen used on these pages), its not actually what I want for the next two to five years of my life.

And whilst I was struggling with this new awareness that I could actually refuse radiotherapy (a concept I hadnt given consideration to before, and which stopped me feeling fearful and powerless and out of control) I heard about Salvestrols and researched about them. That swung it for me, totally.

No way am I going to have horrible radiation put into me which could, in itself, start a new cancer in the future, when INSTEAD I could take concentrated plant extract which has been proven to work in many documentated case studies of cancer, but cant be ‘advertised’ or promoted (as pharmaceuticals are) due to the lack of money available for clinical research for natural remedies. How ridiculous it would be to subject myself to radiotherapy when there is an alternative I could use?

I stress this is my own decision. Its not a suggestion that others should do what I have decided to do, but it does actually fit into this thread and is another perspective.

I dont actually mind having a breast removed (in the future) if necessary (my goodness it would be a million times worse if I had a leg amputated, or similar), but I do mind struggling for the next few years with extreme fatigue and all the side effects of the treatments I have been advised I will go through, and my quality of life being damaged by that.

I am not suggesting that anyone follow the decision I have made, but I would strongly suggest that if you are considering this issue, then some research be done by you (and any others) on these.

Good luck to everyone in their own personal struggle, and I am aware that each persons decisionsthey make for themselves is dependent ontheir own particular circumstances, the type of cancer, the prognosis, etc.

Lulu

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Hi m-c teacher - have a look at this thread which might help you decide re chemo:

http://www.breastcancercare.org.uk/community/forums/undergoing-treatment-breast-cancer/making-decisions-chemo

Jayne x

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I know that “everybody’s different”, and I know, because I’m living with lymphoedema and neuopathy, that side effects can be long lasting, but I am SO with Lemon Grove on this one. I don’t want to be six days, six months, six years, whatever down the line hearing them tell me I have secondaries, and thinking “if only I’d had the chemo/radio/mx/etc… offered me”
Good luck, I know it can seem like a hard choice, but it is all doable, we’re all here to tell you that.
x

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Thank you Jayne I will xx

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I am a man but have been through mastectomy 3 x fec, 3 x taxo followed by a 4 month gap before radiotherapy while I had an abscess on the wound scar, then the radio therapy in 20 fractions, a year of herceptin and 5 years arimidex/tamoxifen.
Listen to the ladies with secondaries - you want the best possible outcome, not the most comfortable treatment.
However, make sure that your consultant and chemo oncologist are in agreement with the scope of the radiotherapy, it should be a team effort with no more or no less rads than required in the prescribed places.
My surgery and chemo was in a different hospital to the radiotherapy and I am convinced that the radiotherapist unliaterally increased the scope of lymph nodes in axilla and neck to be atrophied. Because I had 4 months of pre-Rads freedom I know what working lymph drainage feels like, post-Rads I live on the verge of lyhmphoedema in the affected arm because I now know what non-working lymphs feel like. So make sure that everyone has their input and agrees your treatment for the best outcome. badger them all for answers on effects, medical trials and current thinking, they can’t advise your choice but they must answer your questions - and write everything down in your own notebook.
with very best wishes for a bright future

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I second clunkshift’s words ie the best possible outcome, not the most comfortable treatment.
Chemo is ‘doable’ just like the rest of the treatments that I and many others on this forum have undergone. Of course nobody wants a breast cancer diagnosis in the first place, or relishes the prospect of whatever treatment they are offered. As far as I was concerned, I would much rather have taken my ‘medicine’ with a smile than turn it down and face the grim consequences.
Of course I didn’t want to lose my hair, but I knew that it would grow back (as it has) - there would be no coming back if I lost my life!
Breast cancer treatment doesn’t come cheap - my herceptin treatment alone costs the NHS over £30K. Let’s be thankful that they do have treatments at their disposal to use as our insurance policies against any recurrences.
Nobody can tell anybody else what they ought to do as far as their treatment is concerned. We must all make up our own minds based on what we know and have researched, and then live with the outcomes of our decisions.

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lulubel you say.
“No way am I going to have horrible radiation put into me which could, in itself, start a new cancer in the future, when INSTEAD I could take concentrated plant extract which has been proven to work in many documentated case studies of cancer, but cant be ‘advertised’ or promoted (as pharmaceuticals are) due to the lack of money available for clinical research for natural remedies. How ridiculous it would be to subject myself to radiotherapy when there is an alternative I could use?”
There is NO alternatives that you could use instead of radiotherapy as you suggest, and i think it is wrong to suggest or promote any dietry suppliment on a cancer forum as a subsitute for a proven cancer treatment.
The reason these consentrated plant extracts cant be ‘advertised’ or promoted as a cancer treatment/prevention is because they has not been proven to work in clinical trials, the suggestion of a lack of money for research into natural rememdies is a poor one, Alt actualy makes as much money in a year as cancer research does . I would also remind people that the Cancer Act 1939 forbids the advertisement of any remedy offering to treat cancer.

Prohibition of certain advertisements.

(1)No person shall take any part in the publication of any advertisement—

(a)containing an offer to treat any person for cancer, or to prescribe any remedy therefor, or to give any advice in connection with the treatment thereof;

Make sure you talk to your oncologist before considering taking salvestrols , or any other kind of Alternative or complementery suppliement , as they could interact with treatments- and there’s no solid evidence of any benefit in most types of cancer.
Linda

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Thank you all for your comments, which I am reading as I get ready for my appointment. I posted because I wanted to hear the experience of others to gain info to help me decide what to do. I would like to make a couple of points.
To read that “people like me” make someone angry when they don’t know me was a shock. When writing this I was feeling low and anxious so this was not that helpful. That said, take the personal comments out and the post made useful reading. I am an analytical person and that is why I wanted to speak to others to help me decide. Most of you agree this is a personal decision so I don’t see why you feel able to judge any decision made. I go to this appt with an open mind but if I decide against that will be my choice.
I understand a bit about secondaries as a close friend is on that road but I also understand about quality of life and I want what is left to be best quality, hence the concern about my heart and lungs. The percentages quoted to me have not shown that radiotherapy changes my outlook that dramatically.
My concerns are not for the comfort of treatment but the outlook afterwards. I have had a very bad time on Docetaxel. Yes it is do-able but for some it involves stays in hospital and quite uncomfortable side effects. I finish this week. I am not a wuss or I wouldn’t be having the third!
I have no concern for the radiation - I lived with the nuclear industry for years and probably have already had higher doses. I am not worried about the comfort of treatment either- just the long lasting side effects.
I too welcome my herceptin and pay homage to those who died while campaigning for it.
I am grateful for your input. Clunkshift - yours was spot on - I will go well armed. Mc-teacher - chemo effects are, I am assured, seldom permenant and a few weeks discomfort and it all starts to get better! Thaty is why I am looking forward to this last treatment being over! My experience has been about my body, yours may be very very different. Lemongrove - some good points, but my decision should not make you angry what ever I decide.
May I wish you all well on your futures and thank you for your time
Kahren