Studies on the effectiveness of chemo and radiation
Hello everyone! I'm new to this forum, and this is my first post.
I'm facing breast cancer surgery in one week. As far as I know, the cancer is small, about 1cm in size, and I've been told that I 'probably' won't need chemo, but just radiation.
A few questions, if I may!
1. When is chemo not done, but only radiation? Is it for small cancers?
2. How effective (really) in removing cancer is chemotherapy or radiation?
3. Can anyone refer me to recent studies showing the statistics? I'm interested in absolute percentages, not just relative ones. How many people actually DO have recurrences, with and without chemo or radiation?
Looking forward to any responses. Thanks in advance!
Comments
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Hi this might not be what you want to read, but I was told everyone is different and be careful about getting general info. After my op the lump went for testing when they confirmed grade and treatment - meaning a grade two would be just radiation and grade three would be chemo. When those results came back I was a three and was referred to oncologist. He then gave me the info you are wanting for my age, grade and type. It means waiting which is awful, but looking at General stats snd working out what might happen I guess will make your anxiety worse. Even being a grade three might not mean chemo if you do an oncotype test. I decided not to read anything until I knew all facts from experts. I hope that helps and good luck
Ailsa xxx
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There are so many variables - different types of BC have different prognosis and different TX plans. The Stage comes into play. If there is node involvement.
With some BC neoadjuvant chemo (chemo before surgery) has to be done to give the surgeon a chance of getting it out. Neoadjuvant shrinks it and in IBC (Inflammatory Breast Cancer), it gets the 'nest' or 'bands' to form a 'lump' with margins.
Over all health at time of DX, age, lifestyle, atitude also all play roles in prognosis.
'Stats'/% are just math that has compiled a lot of 'stuff' that does not actually apply to an individual. 'Your' personal odds are either 0% or 100%. Either 'you' do not have a recurrence. (0%) or 'you' do (100%). 'You cannot get a % of cancer mets, either 'you' have a recurrence or don't.
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Here's one on the effectiveness of lumpectoy plus radiation: http://www.nejm.org/doi/full/10.1056/NEJMoa022152
Your docs or your cancer center can probably steer you to lots more.
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you'll make a bestter estimate after you have postop pathology in hand. We are all desperate to read that it will be good odds but even with crappy odds many do well.
best of luck to you.
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Thank you, Alisa. What's an 'oncotype test'?
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Thanks, Kicks. I'm really so worried about what I'm going to be told. I couldn't bear the idea of having chemo. I just couldn't! Radiation scares me too, but it's probably the lesser of the two evils. I can't sleep at night with anxiety.
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That was an interesting article, Brookside, and confirmed what I'd already been reading - that there's no great long-term difference in having radiation or not having it. Only a minority of people actually DO have a recurrence. That's hopeful! Thanks for the link.
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I hope so, Wrenn. Thank you!
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Hi Caralex, I wish I could give you a big hug. I am going to rattle on about me only because it may help, not because I want to talk about me! I was 4 sessions in to therapy for anxiety when I found out i had mine. My anxiety is all about losing people and dying so what a crappy piece of luck. Anyway I know your anxiety well, everyone will be anxious. It is so hard and no one knows how hard unless you have been through it. You wait for mammo, then biopsies, then oncology..... and it goes on but the waiting does stop. All i can tell you is what i choose to do with my anxiety, and i am not saying i am right but this is how i coped.
I read a couple of things on line and all it did was make me think what if, what if and made me feel just so much worse, if that was possible. I couldn't sleep, but who can? So i stopped, after strict words from my hubby. My breast nurse also told me and i have to agree, the worst part is waiting, but dont start guessing as everyone is different.
After my op the upped my grade from a grade 2 to 3
. Apparently the bit they got from biopsies was a 2 but when they looked at it all it tipped over to a 3. So onto the oncologist...... I went there thinking right this is the end.....He said there is a new ish test in America which looks at the tumour and by looking at about the 20 genes they can plot me a risk scale from 1-50. If i am low i wouldn't need chemo as not very effective where as high risk there is benefit. So another two week wait. Please bear in mind i am in the uk so that is why so long. I'm also private and would not have been offered this on nhs, just chemo. I guess if yours is a grade 1 or 2 you might just be referred to the radiation consultant and never see the oncologist but again everyone is different. My mother in law was told she would need radiation and to her surprise needed nothing. Im just telling you about my onc. Just in case but i hope you dont need this info.Anyway the results came in and typically i had a choice as i sat right on the cusp of low and intermmediate risk. So me, who said no chemo couldn't bear it, actually said yes ill have chemo. It is only at this point that i decided to educate myself about it as i had every fact about me, and then the questions started. I am sure my oncologist dreads me coming lol! I have to say the chemo is awful, not quite as bad as I imagined, but that nurse was right, the worst part of this is waiting. I now and have to get on. You will be the same and you will be strong because we are! We all go onto the next stsge of our recovery and count down. Please keep us updated and good luck for your operation, I will be thinking of you. LOTS of you time and looking after yourself please xxxx
Much love Ailsa
Sorry for bad typing I am on a kindle...:)
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Caralex, actually only a summary of the article seems to have appeared. The full article indicates that mastectomy and lumpectomy plus radiation produce similar outcomes. Lumpectomy without rads is definitely not in the same category. Hopefully someone else can point you to the correct source.
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Thanks, Gunnie. Maybe you're right - I shouldn't be spending time online looking for information. As you say, everyone is different. Some people here have gone through hell, it seems. In comparison, my 1cm lump seems minor. I wish they'd just take it out and let the body heal itself with no further toxic treatments. Whatever good they do, the side effects are worse than the disease in many cases and no logic will convince me that more harm than good is not done in trying to poison and burn an ill body back to health.
Anyway, thanks for your good wishes. I wish you all the best too. I probably will not post any more.
C.
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Thanks, Brookside, for going to the trouble of looking it up for me.
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Dear caralex,
You should know that you are reading about side effects from people who have them, and you are not hearing from the many more who do not have those side effects. I've had both radiation (twice!) and chemo (twice!) and they are both easy. I really had no side effects from the radiation and had minor side effects from the chemo. Something to keep in mind.
I know for certain that I would not be alive today without chemo (not so sure about the radiation), so there's that too. The chemo completely knocked out the cancer.
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Thanks Kayb - I certainly intend to ask the doctors for links to the most up-to-date studies. Thanks for the information.
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Glad to hear you're doing so well, WinningSoFar!
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Gunnie, I am actually suprised that they gave you chemo for DCIS. That means that it is contained inside the duct and no chance of spreading, because it is NOT INVASIVE.
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DCIS is also always stage 0. Gunnie, did you have IDC as well? Having both is not at all uncommon.
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You can always make the decision not to move forward with any kind of treatment, toxic or otherwise. I am getting such a hard time from my surgeon about not doing radiation and from my oncologist, who is pushing Tamoxifen as if the payment for his children's college educations depended on my taking it!
I am still upset with my surgeon who did a hatchet job of handling my lumpectomy. The cosmetic result (granted, I'm only about 6 weeks out from surgery) is so very disappointing that I pretty much cry every day. I had much higher (obviously, too high) hopes of what everything would look like. I just feel so discouraged by how disfigured i look.
My surgeon also took 6 lymph nodes out when he promised he would not
take more than two. I guess I should be lucky, as I have a friend who
was told by her surgeon that he, too, was going to remove one or two. She wound up
missing 27 lymph nodes and has been battling lymphodema for 15 years.
She can't even get a paper cut on her left hand without the swelling
starting.I then called the surgeon's office to see if what I was experiencing looked normal. His nurse returned the call, not him, stating that the surgeon's response was that if I didn't like what it looked like I should see a plastic surgeon in 9 months.
My OB/GYN agreed to see me and stated that, yes... that's as good as it's going to look. After the waterfall of tears, I have set my current goal at proving my OB/GYN wrong. I have been doing
castor oil packs twice a day with massages. The sunken area seems to be
somewhat less rigid and the puckered/dimpled areas have seemed to have
smoothed out a bit. Of course, it could just be wishful thinking or
that I'm getting used to how it looks. That said, it still has a LONG way to go before looking even close to normal again.There are a lot of alternative options out there. Eating healthy, targeted neutraceuticals, juicing, exercising, etc. The information can be overwhelming. Just go with what you feel is right. Don't feel trapped by the cancer machine - cut, burn, and poison is all that is typically offered. Nothing on nutrition, fresh air/water, exercise, or eliminating stress. Not to be too cynical, but there's no money in that for the people who are part of the system.
In fact, I've been advised (and, to be honest, I've never actually vetted the information) that my local regional hospital survives off the money it makes from doing chemotherapy alone. As is usually the case, follow the money trail!
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Hi exbrnxgrl, maybe I have it wrong. Some of te information this forum was asking for when I filled everything in I didn't know, so tried my best to get from report. I know it was ductal but maybe not inistu then, I shall check again. I must be wrong as they definately said stage 1 and grade 3. Thank you for the note.
Ailsa
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Interesing, if harrowing, post, LoisT! I'm so sorry to hear you've been disfigured. I'm worried about how I'm going to look too, though reconstruction is available free of charge in Canada. I too, have severe reservations about Tamoxifen, if it's suggested I take it. I've been reading about the side-effects, and they're horrific! At least though, the pills won't be forced down my throat. I can just refuse to take them. I'm not sure if I can avoid radiation, though.
You're also right about the importance of correct diet and exercise. Work with a Naturopath, if you're not already doing so, for that aspect of your healing.
I hope everything works out well for you in the end!
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gunnie,
Yes, you might want to check your pathology report. DCIS is always stage 0 and not treated with chemo. It could be that you're confusing it with invasive ductal carcinoma, IDC.
Caralex,
You can avoid radiation or anything you don't want. No doctor can force any tx on you. Of course, they may then refuse to treat you and advise against skipping their recommended treatments, but it is ALWAYS your choice! As for tamoxifen, not everyone has se's horrific or otherwise. As a matter of fact, most people tolerate it quite well, but those who are having trouble are more likely to post about it. In the end, find research/evidence based on reliable facts and do what you feel best with. I'm not sure why people think they are being forced into any tx, you always have the right to refuse.
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I have to second what exbrnxgrl says--no one forces anyone to do any kind of treatment. If you are feeling pressure from your docs, it's because they have seen firsthand what does and does not work for their patients, and they want you to get treatment that works. Am I giving them the benefit of the doubt. Of course, but why would someone see an expert and then be too suspicious to accept their advice?
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any good MO/RO is going to give you data on people in your situation with similar diagnoses, biology, etc. But in the end, you get to decide. I found that the doc were very up front- talked about what they had seen and also the data. But in the end, it was my decision. No one ever said "you HAVE to have chemo, radiation, hormonal therapies. I chose those things based on what I learned.
Side effects vary-- chemo was not fun, but doable. Given what I know now, I think I would still make the same decisions that I made 6 years ago.... no complaints. Very healthy and intending to stay that way! Remember, it is your life, your body--you really do get to decide. There is a lot of good info out there to help you make those decisions. Pick good docs, work with them to make decisions, then just move forward.....
good luck
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Hi exbrnxgrl,
My worries about side effects are not just those that are obvious DURING treatment, but long-term ones, that may not appear until years afterwards. I think it's a valid concern, and something I'm keeping in mind.
I understand what you're saying about being 'forced' into treatments - it's the reaction of the doctors I'm worried about. Will they be hostile, or downright rude, angry or impatient (you name it), if I refuse? I want to be on good terms with my treatment staff, but I'm also capable of doing my own research, and don't want my valid concerns dismissed out of hand by doctors who, although they may have years of experience, are hostile to 'alternative' methods of healing. Many doctors sneer at Naturopaths, for example, although they're completely licenced and have huge clienteles here in Canada. It's that sort of attitude that bothers me.
Hi WinningSoFar, if I may comment on your last sentence: "why would someone see an expert and then be too suspicious to accept their advice?" To be honest, it was the chain of events that led me to the surgeon/oncology team that will be treating me. I had a mammogram. That led to the result being sent to the hospital, where the said medical team contacted me as a result. In that sense, I didn't choose them - I had never heard of them before, and (still) don't know how good they are. I feel I have to go along, to a certain extent, with what's being put before me. Do I feel under pressure? Certainly! But once I've healed from the surgery, and my mind is clearer, I have four weeks before the next phase (radiation) is set to begin. I'll give it serious thought, having read from both of you that I CAN refuse it.
Again, thank you both for your informative posts. I really do appreciate your input.
C.
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Caralex, one nice thing about medical practice today is doctors have to be completely honest and accurate when we grill them about risks, outcomes, side effects, long and short term stuff, all of it. Even better--They know we are all hoping to avoid toxic or unpleasant treatments and understand that a large part of their role is to address our concerns and correct our misunderstandings. I think most of us come to our first appointments with lots of outdated or simply incorrect information. I was really staggered by my lack of knowledge of the risk reduction that radiation and chemo offer (in the correct situations, of course). I thought I was well informed, but, truly, my conceptions of these treatments were probably based in the 1980's (if not the 60's!). I really recommend a nice, long chat with your each of your docs, including your primary care, especially concerning scientifically researched short- and long-term outcomes. As you indicated, you have a month before you need to say, "Yay," or "Nay." The more information you can gather between now and then, the better, and more comfortable, your decision will be.
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Thanks, Brookside for that piece of advice! I just wonder though, will they give me the information that's up to date and totally true, or the information that supports their own point of view? They may not necessarily coincide.
My feeling (at the moment) is, that if I don't go along with what they want, they'll be judging me, negatively.
C.
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Caralex, its always good to get second opinions. You may find that you have to search a little for an oncologist that you will feel comfortable with. My wonderful oncologist was a second opinion. I knew the minute he walked in the door that he was for me. I will say, he was a referral from the cancer center so i knew he was qualified.
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Lois - How could your Surgeon have known before surgery what would be necessary? As you are so worried about 6 node removed instead of 'just 2' - are you aware that any surgery or trauma can result in LE? Have you seen a LymphEdema Therapist for assesment? I deal with LE and have for almost 5 yrs - it does not limit my life at all. I live a very active outdoor getting many scrapes/cuts/punctures that have all been quickly/easially handled with hydrolgen peroxide.
caralex - Unless you have been adjudicated incompetent and have a court appointed conservator, you can not be forced into any TX program. By the same token - a Dr does not have to keep you as a patient IF you refuse to follow any/all TX plans.
On Tamox - I haven't been on it. I started on Femara and when it became available in generic form (letrrozole), I went to generic. I have had no SEs with it. Feb will be 5 yrs on it (will continue on it 'forever') and I do think it has had effect on me being 5 yrs post DX IBC and still NED. No 2 people have the same reactions to anything. Unfortunately, so often one 'horror" story is what is read and decided to be what 'happens' instead of the many 'good' experiences.
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Hi
I would suggest that you get the info from your docs, then evaluate it before you assume that you won't agree with them. My experience is that docs would really rather not give harsh treatments to patients if they do not have to or if there is any evidence to suggest it is not entirely necessary. Get the info then take some time to absorb it and think about what you want to do. Frankly, whether they are "judging" you or not should not necessarily be part of the decision. And if you do not like them because you think they are judging, then you might consider changing docs...
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When we're under stress, our reasoning is not at its best. We might adopt an attitude of 'just tell me what to do' or the other extreme 'I don't believe a thing you tell me'. I think that's just human nature and is a type of denial. If you are really suspicious of your cancer team, please get another one that you do have some faith in, because initial diagnosis may not be the last time you'll have to deal with them. I have a friend who followed alternative measures until her cancer broke through her skin and now she's back to conventional treatments. I don't say that to scare you into conventional treatments because my friend had a very grim prognosis and I doubt that you have such a nasty cancer.
It's impossible without a crystal ball to know what's the right road to take. We just have to do our best and wait for the outcome.
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