Advice for young women before they start treatment
Hi, I was finally motivated to join this on-line forum after receiving the latest version of the Beacon. As I read the results of the survey on radiotherapy, I nearly cried as I realised how many women have received long-lasting radiation burns from their treatment.
My story is that I was diagnosed at 39 nearly six years ago. I am lucky enough to have a sister-in-law who is a doctor and she advised me against the radiation treatment that was proposed at the time, showing me some research that found that the risk to the heart (it was my left breast) from radiation, especially for young women, is greater than any benefits over a 20+ year timeframe. As most women are in their 60s at diagnosis, a 20 year time frame is considered ok, but for those <40, it's a different matter.
Nearly 6 years later and I continue to be cancer-free and have not had to go through any nasty side-effects or scarring.
I guess the question now should be: how can we make this sort of information available to young woman before they make treatment decisions. (Also perhaps how do we ensure oncologists have the time to keep up-to-date with research results?)
I don't know the answers....?
Comments
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Wow! No wonder I was so scared prior to my radiation. I was 50 at the time so was middle of the road. I have recently had to undergo more radiation therapy at age 54. I did not know the information that you gave. I have two daughters and a granddaughter (aged 3). My friend had intensive radiation nearly 5 years ago and is now being treated for heart cancer (cancer in ther pericardium). She has suffered severy chest wall pain since her radiation. Very interesting information that I will put in my memory bank - if there is any good grey matter left after my chemo finishes.XLeonie
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Wow! No wonder I was so scared prior to my radiation. I was 50 at the time so was middle of the road. I have recently had to undergo more radiation therapy at age 54. I did not know the information that you gave. I have two daughters and a granddaughter (aged 3). My friend had intensive radiation nearly 5 years ago and is now being treated for heart cancer (cancer in ther pericardium). She has suffered severy chest wall pain since her radiation. Very interesting information that I will put in my memory bank - if there is any good grey matter left after my chemo finishes.XLeonie
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Thankyou for sharing this information Sagesse and great that you are still cancer free 6 years on!!!
It still comes down to an individual decision. Some women who do not have radiation have a re-occurance. So for me I would still chose radiation over no radiation so I had a life to live 40 years on (fingers crossed).
I am not saying that Radiation is a something everyone under 40 should have, or not have, but also dont want to see women newly diagnosed read these comments or the ones above re: heart cancer and decide against it, because like any treatment it should be individualised and specific to the patient.
We need to know all the facts and I agree that oncologists and surgeons should know about relevant research and pass on to their patients.
We all need to do our own research and got as much information as possible before making our decision and having a site like this one is brilliant where women like us can share our information.
Tanya
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Thankyou for sharing this information Sagesse and great that you are still cancer free 6 years on!!!
It still comes down to an individual decision. Some women who do not have radiation have a re-occurance. So for me I would still chose radiation over no radiation so I had a life to live 40 years on (fingers crossed).
I am not saying that Radiation is a something everyone under 40 should have, or not have, but also dont want to see women newly diagnosed read these comments or the ones above re: heart cancer and decide against it, because like any treatment it should be individualised and specific to the patient.
We need to know all the facts and I agree that oncologists and surgeons should know about relevant research and pass on to their patients.
We all need to do our own research and got as much information as possible before making our decision and having a site like this one is brilliant where women like us can share our information.
Tanya
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Annie2, All we can do is take on board the advice of the experts. In the end it is always our choice as to what treatment we choose. I am very fortunate to have a wonderful team of professionals in whom I have the greatest confidence that what they suggest is the very best treatment for me. I have had two "bouts" of radiation - in the same area - left breast and have had no problems. Yes I was terrified the first time - I had never experienced anything remotely like radiation before. However there was no way that I wouldn't have had it. It was a "walk in the park" as others have said. The only thing that is tiresome is the daily trek to the clinic. With anything in life, things can go wrong but things can mostly go RIGHT. I was told that I had a high risk of lymphdema this time but touch wood I have no problems to date. (I did tell them that I would prove them wrong!!!) With my first BC diagnosis, I researched everything and nearly drove myself mad. So I am a person who likes to know what is new and improved. However before I chose not to have a treatment I would be putting the question to my "team" and would always value their opinions. You will be fine with radiation so long as you follow the directions of the nurses in caring for your skin and taking good care of yourself by getting lots of rest. My friend's situation is so rare and she is her Oncologist 's first case. Without going into details, her BC was also very aggressive and rare. I should have said this in my above post so as not to alarm anyone. So please accept my apologies.XLeonie
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Annie2, All we can do is take on board the advice of the experts. In the end it is always our choice as to what treatment we choose. I am very fortunate to have a wonderful team of professionals in whom I have the greatest confidence that what they suggest is the very best treatment for me. I have had two "bouts" of radiation - in the same area - left breast and have had no problems. Yes I was terrified the first time - I had never experienced anything remotely like radiation before. However there was no way that I wouldn't have had it. It was a "walk in the park" as others have said. The only thing that is tiresome is the daily trek to the clinic. With anything in life, things can go wrong but things can mostly go RIGHT. I was told that I had a high risk of lymphdema this time but touch wood I have no problems to date. (I did tell them that I would prove them wrong!!!) With my first BC diagnosis, I researched everything and nearly drove myself mad. So I am a person who likes to know what is new and improved. However before I chose not to have a treatment I would be putting the question to my "team" and would always value their opinions. You will be fine with radiation so long as you follow the directions of the nurses in caring for your skin and taking good care of yourself by getting lots of rest. My friend's situation is so rare and she is her Oncologist 's first case. Without going into details, her BC was also very aggressive and rare. I should have said this in my above post so as not to alarm anyone. So please accept my apologies.XLeonie
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Hi everyone,
I've just seen quite a few messages in response to my post. I certainly did not mean to generate any alarm or concern about people's choices to have or not have radiation. That is the last thing I would want to do at such an important time in our lives. As someone pointed out, it is an individual decision as to what treatment you agree to undergo, and we are all different!
It's just that I was very touched by the story in the Beacon and was wanting to propose that newly diagnosed women be given complete and up-to-date information that they can use to decide on their treatment plan. Someone suggested that you put the question to your "cancer team" and see what they advise. I think that's exactly right. It's just a case of knowing what questions to ask. (Not everyone is as lucky as me to have a family member who is a doctor with a strong research background.)
Also, just for the record, from memory the concern with the heart is not about the risk of heart cancer, but rather about the cardio-vascular problems that arise afterwards.
Anyway, please forgive me if my post caused any worries for you personally. Please don't let it add to your stress. Just remember that we are all individuals and in different situations. What works for me may not be applicable to you.
Best wishes
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Hi Everyone
I found all your comments very interesting. I was diagnosed two weeks into my 41st year and I am three years living since my diagnosis. I had two individual breast cancers in my left breast and one had spread to my lymph nodes. I had chemo before mastectomy, followed by 5 weeks of radiation.
One of my maternal aunts had previously been treated for BC and she strongly recommended I use a Vitamin E cream called ProTec. I found it in a chemist and started using it on my left chest prior to radiation commenced. I had some red marks by the end of the 5 weeks. I am proud to share with you all that I am unable to see any area on my skin that was radiated - all skin colour and tone the same. My scar is "beautiful" a very fine silver line.
I had my right breast and ovaries removed last year and am still applying ProTec on a daily basis to my chest and most definately my left arm etc.
I am considering breast reconstruction and do not want a skin graft. The plastic surgeon does not believe I need to have the skin graft on my left side due to my skin being in such good condition.
Go ProTec cream. It is amazing, very easy to apply to skin, not thick like sorbolene cream and I think quite cheap. Ask your chemist to get it in if you can't find it.
All the best to all of you : )
Aneta
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Thankyou Sagesse
Its great that you posted this information to give all women information before making their decision.
Information is power and that is what sites like these are designed for.
Hope you enjoy another 60 years.
Tanya
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I was told by a breast cancer survivor that when you undergo radiation, apply lots of Vitamin E cream onto yourself.
Yvonne
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