Chemo, radiation...why...if the cancer is gone?
| Posts: 1 Joined: Sep 2017 | Sep 14, 2017 - 1:58 am Hi. Quick intro. My name is Kevin and I'd like to thank whoever is running this site. I apologize in advance if I'm not showing proper ettiquite. I'm new to this. The following has all transpired in the last 4 months and it's been a whirlwind as I'm sure y'all know. My girlfriend, the girl of my dreams, was diagnosed w breast cancer. Fortunately, she only had to go through a lumpectomy. They got it all. Hell yeah....right? Initially, they only recommended radiation as treatment. She was reserved about that. Now, after they reviewed her tumor they removed. They want radiation, chemo, and 5 yrs on some medication. Because it's an aggressive cancer. Wtf? If they removed it all successfully who cares if it's aggressive. It's gone...right? Rightfully so, she is tripping. She doesn't want to do it because she has has seen the affect that had on her aunt and another friend. Here is why I joined this site and posted this thread...she asked the oncologists if she had any other options and what if she chose not to do the chemo, etc... She felt like they were shoving it onto her and when she asked they basically said there are no other options. We find this hard to believe. It's time to speak to some other real life survivors outside of the medical community. If she refuse treatment...is she reducing her survival chances? She also has the means to pursue alternative treatment. But, how and who do you ask / research and trust for these answers? I know this is a selfish post and I truly wish I could somehow give back to all the folks that are sincerely fighting this fight. Much love. |
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I preface this by saying that I am not a medical professional, though living with MBC for six years has made me quite conversant in the language of bc. With that in mind, know that breast cancer cells can travel through the blood stream as well as the lymphatic system. Removing the tumor is important, but chemo and rads play the roles of mop up squad. All the best to you both.
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Sorry to hear what your girlfriend is going through, Kevin, and how scary it is for you. The fact of the matter is that when the surgeons say they “got it all," what that means is that they were able to remove the entire tumor that they could see, plus a large enough surrounding margin of tumor-free tissue (and presumably lymph nodes were negative or just a very few were positive). BUT they (and we) have no way of knowing whether cells broke off that tumor before it was diagnosed (or before she even noticed it). An “aggressive" cancer is characterized by cells that divide rapidly—so the goal is not just to eradicate the tumor with surgery and radiate away any invisible cells left in the breast, but also to make sure that any that may have escaped to elsewhere in the body don't get the chance to divide and therefore multiply—sounds confusing, but hang in there—into another distant tumor (metastases, aka “mets"). Surgery & radiation are local treatments, whereas chemo is systemic—it finds rapidly-dividing cells throughout the body and tries to destroy them.
Why that add'l 5 yrs. of another systemic medication? The tumor tested positive for estrogen receptors (ER+), and so endocrine (sometimes called “hormonal" but really anti-hormonal) therapy is advised as the “two" of the “one-two punch" designed to keep your girlfriend disease-free for as long as possible, perhaps the rest of a long & normal life. If she hasn't gone through menopause, she'd be given a drug like Tamoxifen, which blocks the estrogen receptors' access to the estrogen her body still produces in the ovaries, fat tissue and adrenal glands. If she's been through menopause and her ovaries no longer make estrogen, she would instead be prescribed an “aromatase inhibitor," or “AI"--which suppresses an enzyme that converts the hormone made by fat cells & adrenal glands into estrogen. The goal is to deny the stray tumor cells estrogen any way you can—either by blocking it or preventing it from being made. A minority of people believe that can be achieved by non-drug means, via nutritional or non-Western-medicine therapies. That’s why this particular forum was created. (See below).
This is why we don't use the term “cured" or “remission" when it comes to breast cancer (especially ER+), but rather NED, for “No Evidence of Disease." Successfully treated breast cancer can remain “NED" for decades, even one's normal statistical life expectancy.
This is the Alternative Medicine forum, and we are not allowed to disparage the use of non-conventional treatments here, so I won't tell you what I think lest I violate BCO rules. (The Moderators take pains to point out that by setting up the Alternative Medicine forum they are in no way endorsing non-conventional cancer treatments in lieu of conventional medicine; but instead providing a safe harbor where those who advocate and choose to undergo non-conventional cancer treatment without “complementing" it with conventional medicine can freely discuss without fear of ridicule or disparagement).
For a more balanced picture you might also want to check out other forums on BCO, where the discussion is more freewheeling and advice is more varied.
Using terms like “death warrant," even with a more aggressive type of tumor, is inappropriate and premature, whichever route she chooses. I can't be more specific than that here (but I can in a Private Message).
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I believe that she needs improved education to help her understand the things that were pointed out above. The deal with breast cancer is how sneaky the leftover cells rogue are able to hang around despite lumpectectomy or mastectomy and cause more trouble. Many ladies do mix some form of holistic with scuentific
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I would add that - while I have found this site immeasurably helpful on my journey - a lot of what is posted here is about the problems people have. There are individuals who go through treatment with minimal to no problems. And everyone is different.
Chemo and radiation are always evolving. There are concerns and risks to both but not like there were in the past. Many SE's can be effectively managed.
Your girlfriend may want to check out some online models for judging the usefulness of some treatments. Predict and LifeMath are helpful if she has the pathology reports - and she should.
I don't know much about alternative treatments, but it's certainly worth gathering multiple opinions. There can be differences, even within the medical community. It's important that the patient understands any treatment and agrees. A second opinion might be helpful and is usually covered by insurance.
Sometimes it's just a matter of educating yourself and feeling comfortable with your providers and your choices - whatever they end up being.
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Excellent posts already with good advice. Yes, with breast cancer even with a successful lumpectomy, there is no way to know if tumor cells have escaped the breast area (they certainly easily do) and are lurking somewhere else in the body (chemo and hormone therapy take care of this), and no way to know with 100% certainty that the surgeon got every single cancer cell out of there---with a lumpectomy radiation takes care of this part.
Not everyone needs chemo, but certain tumor cell characteristics make the cancer more likely to spread or more likely to respond well to chemo. I think it's also pretty standard in certain types of situations--like tumor size, node involvement, etc.. We don't know the details of your girlfriend's cancer. It might be worth a conversation with the oncologist where they explain exactly why the cancer is aggressive, along with giving some survival statistics with or without certain treatments. My oncologist did that with me, without me having to ask and it was very helpful for decision making.
Wishing you both all the best!
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I'll never forget how my Oncologist explained my breast cancer to me in simple terms. The tumor is the dandelion that went to seed.
The seeds blow where they will. The chemo and rads are the weed killer.
All the other knowledge I've gained through my own diagnosis, my mom's and sister's diagnoses, and talking with hundreds of
cancer patients, nothing made more sense than that to me.
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My sincerest thanks to all that replied. @chisandy i will see if my gf is comfortable pm'ing you. She will probably pm you today. Thanks for reaching out and your post was excellent. I will see if I can edit out the death warrant in my op. Thanks again everyone. Much love.
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Foster70, all the best to you and your girlfriend as you begin your journey together. Your post was well written and honest, and that is the approach to take when researching your options. Will be thinking of you and keeping you in my prayers.
ChiSandy, I am very interested in your post and what you had to say about hormone therapy. As someone who has TNBC, hormone therapy will not be an option for me, and I hope you can give me some thoughts about that status. Most info I find on line is not very recent, so I do not know what kind of options I will have when I finally meet with my oncology team, and that may be a month or more. I am still waiting for results from a SLNB last week; the - hopefully - good news there was that the surgeon only took one node. I had a lumpectomy in July and he said "he got it all" but I am beginning to understand more and more that some cells could have escaped. The surgeon told me before this biopsy that he expected the nodes to be clear.
I wonder if anyone here can tell me, if the SLNB is clear, whether it is still possible that cancer cells could have gone through the node and it remained clear, or if that is not possible. I suppose there IS a possibility that the pathologist missed something. The same pathologist said that my needle biopsy was "probably" benign, which gave me hope, but that "probably" got me in to see a surgeon and that is something I am so thankful for.
Denise-G, I love what you shared in your post. The tumor is the dandelion that went to seed. The seeds blow where they will. The chemo and rads are the weed killer. I think I will frame that and hang it somewhere where, no matter how treatment turns out for me, I will always have a reminder of what can be possible in spite of expectations. I have not given up hope. Over the last five months, I have been taking supplements to boost my immunity and making use of Essential Oils. I am hoping I will still be able to take them during treatment.
Hugs to everyone; I wish you all the very best in the upcoming days and months.
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Weed killer? More like round up.
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Foster70, it is is hard to make a judgement about your girlfriend's breast cancer diagnosis, without knowing the details.
My diagnosis is in my signature.
I had NO "treatments" beyond the lumpectomy in 2006; No radiation, no chemo. And 11 years later, I'm doing great. Without all of the side effects of the "treatments" that are being recommended to your girlfriend.
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53Nancy, make sure you discuss using supplements and oils during treatment. Mine did not want me to take anything. He did not want anything to help the cancer cells that we were trying to kill. No vitamins, no antioxidants nothing until I was done. Same thing with my RO. All doctors are different though so maybe yours will be ok with it.
I'm note sure about the "passing through" the lymph node but the cancer cells can travel through the blood stream as well. Frustrating for all of us that we just never know with 100% certainty if we got everything. We can only do what we can do and say a prayer we are clear
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Foster70, I am so sorry to hear of your girlfriend's diagnosis. I had a pretty similar situation (early detection, successful removal of tumor, no lymph node involvement). If I weren't married to a wonderful man and didn't have a weird and awesome son with him, I am not sure if I would have chosen to undergo the recommended treatments (post-surgery chemo and rads). The reason I did is that my tumor was borderline aggressive (grade 2) and my oncotype score was 28, which is also kind of borderline. The data that was available to me pointed towards roughly a 5-7% better chance of no remote recurrence if I chose this treatment. Which sucks! It wasn't high enough to be a no brainer, even considering my awesome family that I love more than anything. However, the thing that IS a no-brainer is that this adjuvant (post-surgical) treatment, as others have said, is to prevent recurrence elsewhere in my body, where my oncologist said it's not longer curable. Much easier to treat when localized in the breast.
I know everyone is different, but if your girlfriend is otherwise healthy, she might want to go for it for future peace of mind. I just had my first infusion 4 days ago and while I'm still a bit tired and dehydrated, I feel mostly okay. I'm drinking around 60-70 oz of water a day, and haven't needed to take more than extra strength tylenol or aleve for pain, and no nausea or anxiety meds (although I'm already on mid-level anti-depressants). Also, she might wish to seek a second or even third opinion. My mom also had BC about a year ago and having all signs point to yes helped her feel better about her treatment choices.
Hugs to you two. It's not easy, but as many have said to me, "it's doable."
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Leia, were you even offered chemo? I don't think chemo would be standard of care in your situation.
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Legomaster225, thanks for your suggestion. I am making a list of quesrions. All the best -
No, it was not offered. Not that I would ever have done it. As I refused the radiation and the Tamoxifen.
Surgery was enough, for me.
And 11 years later, I'm cancer free.
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Leia, yes, in your situation – small indolent tumor and zero nodes – the chances that surgery was enough are very good.
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Lela, so glad to hear you are cancer free. It can't have been an easy journey. That is an encouragement to us
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Momine, so glad to hear that treatment worked for you. Wonderful to read your post
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Yes, Momine; my IDC, 2cm, Stage I, Grade 1, 0/3 nodes, ER+/PR+, HER2- you can call a small, indolent tumor. Especially compared against your diagnosis, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2-
Although in other threads on this site, a woman with a 2mm DCIS is offered the same treatments that you had, with your much more aggressive cancer.
Again, this is, supposedly, the alternative thread on this web site. There are many other threads where people can talk about their chemo and their radiation and whatever other treatments that these people think are beneficial. This thread is supposed to be about people interested in alternative treatments.
Momine, why are you even posting here?
A sincere question, since with your chemo, radiation and hormonal therapies that you have chosen, you clearly don't embrace any alternative therapies.
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A sincere question, since with your chemo, radiation and hormonal therapies that you have chosen, you clearly don't embrace any alternative therapies.
I find this a puzzling assertion. I've had surgery, chemo, radiation, and hormonal therapy, yet I've been actively involved in complementary and alternative medicine since well before I developed breast cancer, through my treatment (with my allopathic, naturopathic, and other alternative providers working together), and I continue to engage in holistic intervention as well as taking Tamoxifen. "Alternative" doesn't imply "entirely non-allopathic," just as many people do allopathic interventions as well as alternative/holistic interventions. One of my friends was in great agony about surgery and chemo. She decided to go ahead. She later had an opportunity to have a consult from one of the Dalai Lama's non-Western medical advisors. He examined her and said that for her cancer, it was good that she'd had Western intervention. They then discussed what she could do to balance her energy and counter the hot, toxic allopathic interventions. It doesn't have to be either/or extremes.
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Leia, the forum is for people interested in alternative treatments. I am very interested in alternative treatments and have gleaned useful information in this forum over the years. The useful information falls in two categories. One category is stuff that may actually be useful/helpful. The other category is more academic, I guess you could say, in that this forum keeps me informed about which alternative practitioners and approaches are currently trending. I have friends and family dealing with cancer, and sometimes they get taken in by erroneous information, so I like to know what is floating around out there. For example, my own sweet mother at one point totally believed that drinking apple juice with olive oilpwould rid her of bile stones and "detox" her. Having already seen it discussed here and having googled it up, I was able to save her the trouble of pooping soap pellets.
As for someone with 2mm of DCIS being offered the same treatment I was offered, that sounds implausible and as if something is missing from the story. Perhaps the patient is HER+ and has micro invasion? Maybe you could provide a link to the thread in question.
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Foster - you don't state where you and your GF live. Unfortunately treatment recommendations may vary. The comments about needing more details to intelligently answer your post are spot on. I think you should get a second opinion - and maybe a third. Many doctors offer different treatment protocols. Also it would be useful to know if your GF has seen an oncologist and if her diagnosis has been run through a "tumor board". Having that kind of multi-disciplinary group of docs review her details if often important.
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Momine here is the stated purpose of this particular thread:
"This forum is a safe, judgement-free place to discuss Alternative medicine. Alternative medicine refers to treatments that are used INSTEAD of standard, evidence-based treatment. Breastcancer.org does NOT recommend or endorse alternative medicine."
But all of your treatments are conventional medicine. To the point where, from your signature, you've had a bi-lateral mastectomy and Prophylactic ovary removal. You personally will not gain anything from any alternative therapies. Any more.
But then you said you are doing this for others? You mentioned "they get taken in by erroneous information." I guess, the erroneous information, on this Alternative Thread.
I don't have a specific link about a DCIS patient getting the same treatment as you; only that I've seen it, on this board. Just look. I've been here, off and on, for 12 years.
There are people that want alternative therapies, like me. And I've done them. And there are people like you that want conventional therapies. And you've done them.
My current D3 level is 90; what is your D3 level? This is very important to preventing cancer. If most people had a much higher D3 level, even above 60, most diseases would be reduced.
And the FOCC. I've been on that for 10 years and am in incredible health.
Momine, on this alternative thread, I'd love to talk to you about these alternative treatments! They've helped me so much.
Let's talk! They could really help your mother and other friends and family you care about.
Mary
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Leia, yes, I have had my D checked, but my calcium/D situation is a bit complicated. No, I am not interested in eating cottage cheese with flax seed oil, there is no credible evidence to suggest that it is helpful. You equally had conventional treatment, and that conventional treatment is most likely the main reason you remain in good health. Your benefit from rads would have been incremental. Especially in early stage BC, surgery is typically 95% (or more) of the "cure." Whatever alternative treatment you do is being done following conventional treatment, as would be the case for me too (as you point out). So it is equally beneficial or irrelevant for both of us.
Yes, I find out about erroneous information here, but I also find useful information. I try to keep an open mind and learn. As of yet, there is no cure for BC. I remain hopeful that the future will bring new treatment strategies. Recently I saw a study on gut bacteria in connection with immune therapies for cancer. Apparently gut flora has an impact on how well the therapy works. When I was going through chemo I took probiotics, mainly to help against the side effects, but later I found a small study suggesting that probiotics may also boost the effectiveness of the chemo. Lately, some serious investigation of vitamin C has also been done. There are many areas to be explored, including a bunch that currently fall under the alternative rubric.
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@ChiSandy. Wonderful sum up of the situation. A very interesting read.
Unfortunately, there is a lot of clinical research evidence backing up the idea that you should do neoadjuvatic therapy (before surgerical procedures) and adjuvanic therapy (after).
Ther have been a lot of trials that back up this idea. The cancer could be gone after a radical lumphectomy, however, a couple of cells in the lymphnodes could start it all off again in a couple of years. Trust your doctor. -
Hello everyone. I just wanted to share my happy (ier) news. I saw my surgeon today and, though there is still one test to be done on my Lymph Node Biopsy, he seemed confident in telling me that I am Stage 1, Grade 3, NO Node Involvement. He didn't specify A or B for Stage 1, but the best I was hoping for was Stage IIB and I really expected it to be be Stage III. The referral to Cancer Care will be sent today, and I don't know how long I will have to wait to go to for that appointment, but apparently the Triple Negative Status will require that, though I have been told treatment will be closer to home. Meanwhile, I will be booked for an Abdominal CT Scan and a Full Body Bone Scan, so it sounds like a busy time ahead for me.
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Momine, what is your D3 level? I don't understand, your "calcium/D situation is a bit complicated." How is it complicated? You have a D3 level, or not. What is it?
And your comment, "No, I am not interested in eating cottage cheese with flax seed oil, there is no credible evidence to suggest that it is helpful."
Wow, I find this offensive. On this alternative board. I thought we weren't supposed to attack each other, but you are attacking me. Actually there IS credible evidence that the FOCC cures cancer. Google Dr. Johanna Budwig. Here is just one of her books:
https://www.amazon.com/Against-Arthritis-Infarctio...=sr_1_3?ie=UTF8&qid=1508386323&sr=8-3&keywords=budwig+johanna
Dr. Budwig was a seven times Nobel Nominee chemist.
You don't have an open mind; you have a closed mind, evidenced by your statement above, about the Flax Seed oil.
My point is that you've had your conventional treatments; And have benefited from them, I guess. So go post on every other thread on this board that is all in on conventional treatments. Why are you even posting, here.
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Momine, Lela - I guess we all have different points of view. Right now I am doing everything I can - Alkaline Diet, Use of Essential Oils, Vitamins and Supplements to boost my immune system, and Walking. I add Flax, Hemp and Chia seeds to my smoothies, and I hope all these things will help me to make the right choices for treatment. In my mind, it will only work if I keep a positive atitude. Negativity will just drag me down and depress me. Each one of us has to choose what is best for us and understand that it may not work for someone else.
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Foster, my Daughter has just had a R breast mastectomy, (she is 47) all lymph nodes clear, she had dye to see how all her internal organs were and all organs clear, had radioactive dye for bone scans all came back clear. her cancer was oestrogen/progesterone positive and HER2 borderline positive.the oncologist wants her to have strong chemo for 12 weeks and chemo and Hereptin for 12 months after that. Karen has declined the chemo and hereptin as the side effects are horrendous. Heart problems, mouth sores, pain, swelling in the legs/ankles/feet, numbness in the hands and fingers to name a few. we'll go back to her GP in the next couple of weeks to have a chat.. On this Breast cancer site they talk about borderline positive and suggest another HER2 test be done. so at the moment I'm very thankful for this site...I can't understand why if everything is clear apart from her hormones, why they want her to do radium and chemo..it doesn't make sense to me. By the way I'm an X nurse.. All the very best for you and your partner.
by the way, my husband has heart problems, AF, has had silent strokes, his brother has had a triple Bypass heart op, another brother has had a quadruple Bypass heart op, and they want to give Karen stuff that will affect her heart??? not likely!! anyone know any alternatives for hormones? ( or cancer that is hormone dominate) thanks..
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