TNBC, but No chemo, No rads, am I alone?

MsBliss · May 2010

I was wondering if any of my tnbc sisters out there did not do chemo or rads after lumpectomy. I have been told I am a rare bird, but I wonder if there are others out there like me.

I had lumpectomy, first for the primary tumor, which was stage one, then a second lumpectomy to clean up some dcis in one margin. I was unable to do chemo due to secondary health issues and rads was delayed for too long to be truly effective, so I did not do rads either.

I am not panicked but I feel a bit adrift and would like to know if I am a nation of one! It is a bit nerve wracking on this little island!

Are there any of you who are in the same situation as me?

If you had a similar situation, how are you doing and what type of follow up are you having?

jenn3 · May 2010

I'm not in the same situation as you, but am sure I'd feel as you do..... a little worried w/o treatment. Have you talked to you onc about follow up visits and what he/she feels about your particular situation? If you're not completely comfortable with the treatment/follow up you've received and/or receiving get another opinion or two from different oncologist. It's hard to say what I'd do in your situation because I haven't been faced with what you're going through, but I think knowing my personailty that I'd go for another opinion.

MsBliss · June 2010

Dear Jenn,

Thank you. Yes, my onc and I have decided on a course of action. Now that it is 15 months post surgery I am not a candidate for adjuvant therapy. She supports the path I am on and is very responsive to any issues I need following up on. But I would like to connect to other women like me who are doing supportive therapy as well....it would be soothing to not be alone!

Joytotheworld · June 2010

I'm like you in one respect but not in the other. I refused the chemotheraphy but I did have the radiation treatments although, had I known then what I know now, I would have refused the radiation as well. I'm twenty months past my original diagnosis now and am feeling great. I do see the radiation oncologist every six months for a quick exam but that is pretty much the extent of my follow-up for the breast cancer with allopathic doctors. I do follow a regimen that my naturopathic doctor set up for me which consists of a great organic diet, supplements, dry skin brushing, alternating hot and cold water in my showers, exercise, meditation/relaxation/visualization, etc.

I do know how it feels to be the square peg that doesn't fit into the round hole so you are definitely not alone.

MsBliss · June 2010

Hi Joy! It is nice to hear from you. I have met only one other person in my little dingy, but she had one round of chemo and then quit. She is 4 years out, triple negative metaplastic. After she had one round of chemo, she did some additional research and found out that the numbers from Adjuvant Online with respect to her percentages were based on only 27 cases! She is a nurse and very aware of what happens in the medical settings. She decided to stop chemo and also refused rads. She cleaned up her eating habits, moved to a quieter, less urban city, but she is not really taking any supplements either! I am pretty sure that she is at almost 5 years and pretty much out of the woods.

Why do you regret rads? Are you healed well from it? What type of chemo did they originally want to give you? Are you taking supplements? I am on a boat load full, but have tweaked it down to fewer sups these past few months.

Given that I was completely deficient of hormones up to my diagnosis, I am also using bhrt because my general health has improved on it and I am taking methylating sups to create the good protective estrogen (the "2" estradiol). I am a bit of an experiment.

Please let me know how you are doing!

Joytotheworld · June 2010

I regret rads because of the long term damage to my body. It has permanently altered my DNA and this could actually lead in the future to my developing cancer somewhere else in my body. I also didn't know all the facts when I agreed to the radiation. I was labouring under the delusion that it would improve my survival statistics when in point of fact it does not. Undergoing radiation after a lumpectomy does not change the ten year survival rate even one percentage point. Nada. All it does do is decrease the chance of it recurring in that particular breast by 30 per cent. I'm a firm believer in risks versus rewards and I now think that the rewards in this case are not worth the risks. I did heal well from the radiation as far as my skin is concerned except that my neck area remains a little pinkish to this day (which is odd since they didn't radiate anywhere near my neck) and I have scar tissue in the radiated breast.

I am on supplements but only a selective few since my naturopath believes in not overwhelming the body thereby ensuring that the body makes the most of the supplements it's taking. After my surgery, I did take the powdered form of modified citrus pectin but that was only for about a year. Here's a list of the supplements I'm currently taking (I haven't bothered including such things as green tea, ground flax seed and flax seed oil, etc. as these are all things I've incorporated into my diet.)

Omega 3

Curcumin

Melatonin

CoQ10

Maitake

Vitamin D

Calcium

Botanical mixture of tinctures that my naturopath designed specifically for me that I have made up by a herbalist. It consists of: red clover, burdock, mistletoe, cleavers, calendula, poke root, and wild indigo.

So far, I've been thriving on this regimen and I have no regrets about the course I've chosen.

Joytotheworld · June 2010

Oops, I forgot to mention the type of chemotherapy they originally wanted me to do. It was called FEC-D which, I understand is pretty much what they are currently using in Canada for ALL women for adjuvent chemotherapy for breast cancer. The first three treatments are with FEC and the last three with taxotere. The oncologists seem to love their statistics and the statistics they threw at me at the time was that without the chemo, my ten year projected survival rate was 83 per cent and with the chemo, it would be about 91 per cent. So it represented a possible improvement of 8 per cent. When I added in the factor of how skewed the statistics were in the first place (for example, if a patient died during that ten year period from a side effect of the treatment such as leukemia or heart disease, they were considered a success and not an actual death because it wasn't the cancer that killed them), I concluded that for me, the rewards were simply not worth the risks.

MsBliss · June 2010

Dear Joy,

I can't believe I just lost my post to you.....ACK.

Well, I just wanted to tell you how I concur with your take on rads but that you should not be too hard on yourself for doing so. Rads is non proliferative and you are taking steps to minimize the long term effects. You simply made a choice most of us bc girls make.

Given that your neck is still pink and if you aren't already doing this, you should probably ask your naturopath about taking some thyroid support; perhaps some iodine and minerals. Your naturopath can evaluate whether you would benefit from this and it is helpful support.

MsBliss · June 2010

Joy,

Again, I concur with you on how the statistics are not what they appear to be. Also, the more I read about chemo and the state of the art, the more I am unsure. I don't know why they abandoned CMF, which was the first generation chemo, for tnbc. Women who did this protocol who had tnbc seemed to have done much better, yet it has been largely abandoned.

I am beginning to believe that for many of us stage 1, with regard to adjuvant therapy, even triple negs, that depending on co-factors and histopathology, we are better off considering not doing chemo. I think that vitamin D deficiency plays a major role in it's genesis and that if we lack vitamin D receptors, have low levels, or have trouble metabolizing and putting D to work, we are setting the stage for tnbc. With additional diet and life style changes, I suspect we get the same if not more benefit than other forms of therapy.

Based on Adjuvant Online, they gave me a 67% chance without chemo. But your doctors gave you a higher figure. Did they use AO and was your tumor under 1 cm? Did you do lumpectomy?

Joytotheworld · June 2010

I live in Canada so perhaps the oncologists up here use a different source for their survival statistics but I never asked what their source was. My lump was actually very close to 2 cm. in size so I barely made the stage 1 category. My surgeon did what he called a segmented mastectomy which is basically a very large lumpectomy so he took tons of extra healthy tissue - I have no idea why. I had very wide clear margins and the path report did read: no signs of vascular or lymphatic invasion.

You're bang on about the whole Vitamin D situation. When I started going to my naturopathic doctor (about 2 months after diagnosis), my vitamin D level was 34. Now it's 110 and has been at that level for close to a year. In my case, it was understandable that my vitamin D levels had been so low as I had not been taking any Vitamin D supplements back then and I get next to no direct sunlight exposure on my bare skin because I have very sensitive skin and over the years, have had skin cancer (basal cell carcinomas) five times. The sensitive skin thing is probably also why I got some weird skin reactions during the radiation treatments. Along with the pinkening of my neck which is very slowly but surely fading, I also got strange rashes on one breast (not the one being radiated) and on both ankles and the insides of both legs. Those rashes cleared up about two months after the radiation treatments were finished. My naturopath's explanation for the rashes was that it was my body trying to get rid of the radiation any way it could. She actually said that it was a very good sign that my immune system was doing its job.

The decision whether or not to do chemo and/or radiation is such an individual thing but the only thing I hate is how the oncologists insist there is only one way and want to put everyone on the same breast cancer assembly line instead of treating us as individuals. I had one of my 6 month check-ups last week with my radiation oncologist and, while waiting I started chatting with another patient. This lady had been diagnosed and treated for stage 1 breast cancer 8 years ago. She did everything the doctors wanted: lumpectomy, chemo, radiation and yearly follow-up mammograms. Everything was fine until about 6 months ago, when she developed a nagging cough and then learned her breast cancer had metastasized to her lungs. Going the allopathic route doesn't work for everyone and in my case, everything inside me was screaming not to do the chemo so I didn't. Instead, I've changed just about everything in my lifestyle and am overall healthier and happier because of it.

MBJ · June 2010

Hi MsBliss: How are you? It's Mary Jahn. I saw your post here and even though I did do the chemo and had to have a mastectomy due to having such small breasts, I am completely against radiation and went out of my way to find a dr. who agreed to not radiate my breast. I think it's so important to pay attention to the signals our bodies send our way. For me doing chemo was the only way that they could remove my tumors--lumpectomy was never an option. I agree with Joy and what she said about changing one's lifestyle and making healthier choices.

BTW: I have this amazing healing/guided visualization/hypnosis cd by Peggy Huddleston called Healing from Surgery. It isn't just for surgery. It puts you in a (very approporate name) state of complete Bliss and feeling of Zen. I highly recommend it as part of your treatment/prevention plan.

MsBliss · June 2010

Hi Mary Jahn!!!!

Wow, it is good to hear from you.

I agree that radiation is a double edged sword and it is being used far too broadly. Some will benefit from it, but I think there is a much bigger downside to it than is being revealed. We have to avoid the assembly line process where one recipe is used for all. It works for the system and convenience, but the individual gets burned, so to speak.

I am glad you found a doctor who will support your decision re rads. I have found that my onc supports these choices as well and it is very helpful to know I won't be outcast because of it.

In the interim, you might ask your doctor about adding sulfaphoranes,curcumin, and regular robust amounts of blueberries (frozen is fine) to the mix. These three food based sups have been shown to reduce and eliminate bc stem cells. You need to address the stem cell component during this stage. You can use them orally and topically. Using them as a supplement will "weaponize" them as you will not get enough of the key compounds by diet alone.

Thank you for the referral to the Huddleston book, I will look into it.

MsBliss · June 2010

Dear Joy,

When I was dx, my vitamin D level was 16! What's more, the doctor that ordered the test did not tell me how low it was! They were happy to charge me for the test, but they did not give me the results! Finally, a month later, another doctor noticed it and prescribed D, but of course, it was D2, which was worthless and I took that for 3 months before I found out the truth. Also, the pharmacy label and mongraph says the D I was prescribed is called "Maximun D3"--clearly a mislabel and one which the FDA did not care a wit about when I reported it. We really cannot delegate our well being to this system, can we?

There is a response that the body has to radiation wherein peripheral areas have a reaction to the treatment even though there is no directed therapy in the other areas, but I can't remember the term for it. Radiation is a bastard! It certainly has it's place when used for gamma knife and other disease progression scenarios, but to irradiate en masse just dosen't make sense to me.

I am willing to place a wager that the dear woman you met at the doctors never had her vitamin D levels checked.....to go for 8 years, then have recurrence as she has, is just so obviously a function of multiple controllable factors. I would have liked to have seen her use Sono Cine ultrasound and thermography and cut back on those yearly mammos too.

Like you, I chose to make lifestyle changes, but this last month and a half I have been unable to keep my committment up, plus I have been under severe stress. I hope to get my footing back now and join you in that healthier and happier place.

tibet · June 2010

I had a small tumor of 1 cm and had mastectomy. My doctor suggested I did not need rads. Then, I consulted many TN long term survivors and concluded that it maybe better to have Rads because it could prevent some cells going to the skin close to where tumor was. (My tumor was close to the skin, around 5mm margin, which is considered as clean margin) but I was still worried about that. Rads nowadays is much less dosage than many years ago. My rads oncologist told me me the risk of Rads is that it could in 20 years cause sacorma but it is not that common and she said in her 20 yrs practise, she never heard any other cancer caused by the breast area rads in general. It doesn't seem to cause other cancer though. My BC was on the right side, so it doesn't rad heart area which could be riskier according to my doctor. Then, she went on and found out there are studies outthere saying doing rads post mast., could improve local recurrence. Since TN is agrressive, I decided to have rads so that I know I did all I could to treat it. I had only 27 rads and it did not have any side effects other than that the area is a little tanned.

Rads 20 yrs ago for example was recommended for all BC women and in much high dosage than today. Yet, I met some women did rads 20 or 30 yrs ago without any health problem today.

Joytotheworld · June 2010

Newalex, the decision whether or not to do rads or any other treatment for that matter should be an individual thing. You obviously have made the right decision FOR YOU. That doesn't necessarily mean it's the right decision for everyone. This is coming from someone who did the rads (only sixteen sessions were needed in my particular case) and regrets doing so. Mind you, I'm also someone who turned down the chemotherapy so already it's evident that I'm the kind of person who thinks outside the box. When I went into extensive research mode, I was shocked to discover that having rads does not improve any breast cancer patient's survival statistics, just the chances of it recurring in that particular breast. At the same time, it greatly ups the chances of developing lymphedema which can end up to be both painful and crippling. So far, lymphedema has not been a problem for me but I do have extensive scar tissue in my right breast from the radiation. The lymphatic massage therapist that I visited explained that, if I could see inside the breast tissue, my scar tissue would look like the skin you see on third degree burn victims - all black, charred and twisted. If going through radiation had meant that I was increasing my long term survival statistics, then I wouldn't care about any of the potential side effects, but since it doesn't, I will always regret not doing more research BEFORE undergoing the treatment.

I'm sure there are many women like the long term survivors you have met who have experienced no long term health problems as a result of radiation. But then I also wonder how many women are like the lovely lady I met in the oncologist's waiting room, who 8 years past her original diagnosis and treatment for stage 1 breast cancer, then experienced metastasis to the lungs. Was it caused by the radiation? There is no way to tell but the lungs are right there in our chest and you can bet your bippy they are absorbing some of the fallout from that radiation.

I'm not encouraging anyone to not get or to get radiation - simply to do the research and ask the questions and not necessarily accept the doctor's quick reassurances that "there are no possible dangerous side effects from radiation treatment." This is what I was told and I simply accepted it as fact.

I'm all too aware of the fact that triple negative breast cancer is considered a particularly nasty, aggressive beast but that's primarily because they know so little about it and have no specialized treatment for it. All allopathic medicine has to offer us is chemotherapy and radiation so they do what they can with what they know and have. And actually, if you look at the bigger picture, the likelihood of dying from triple negative cancer is not any higher than from the hormone positive ones. The sole difference lies in the fact that if it's going to recur or metastasize in us, it does it a lot sooner and faster.

I'm going to get down off my soapbox now but I only spoke up because I got the impression that you came into this thread that was clearly labelled as one looking for folks who had gone the no chemo/no rads route and were then trying to tell us we were wrong in our choices or to warn us in some fashion. I personally appreciate your concern but I can assure you that I am as comfortable with my choices as you are with yours and hopefully both of the paths we have chosen, though different, will work out for both of us.

PauldingMom · June 2010

I support each of your decisions on the type of therapy you received after your surgery. I just worry that there are some women out there that might read this and take it the wrong way. Please don't be upset with me that personally I would eat worms to get rid of the chances of this B.C. from coming back. Luckily I didn't loss a breast from my TNBC tumor, and I am blessed that my radiation, although intense, wasn't considered a high risk area. (Right breast at 12 o'clock) I do see that my stage was higher than most of you here. I wonder if you had available to you the newer type of radiation known as Breast Brachytherapy or sometimes called Balloon Radiation and if you did, would it have been something you would have considered?

You must be a very small group indeed and I find your insight very interesting. For me, personally, I don't have any side effects from the rads. or chemo. In fact the chemo. got rid of a nasty little foot fungus! Smile Gotta find that silver lining.

Pink Hugs!

Joytotheworld · June 2010

Paulding Mom, no one could get upset with you for simply stating your choices and voicing your concerns. That's always a good thing to do.

Actually, I think you just might be surprised at how large a group of women are pursuing alternative therapies for their breast cancer treatment. For example, I'm on a VERY large international mailing list that is comprised of ladies who are following a similar path to my own. The reason you won't find a lot of us square peg in round hole types posting on places like this message board is that often it ends up in our being attacked or criticized for daring to go against the traditional norms for breast cancer therapy. So we tend to keep our mouths shut and do our own thing but when I saw Ms. Bliss's original post, I wanted to let her know that she is definitely not alone in her choices.

MBJ · June 2010

MsBliss: I do eat lots of blueberries and curcumin and I also take supplements for the curcumin with food. But what is sulfaphoranes? Is this MSM which I also already take?

You should have seen the look on the dr's and nurses faces when I brought in my bag of supplements with me to surgery!! My dr is very open minded and when i told him why I was refusing morphine he had his team research it and he let me use a different general anesthesia (Tramadol) plus they gave me a local. I listened to the Peggy Huddleston meditation 3 times before going to bed the night before surgery and this plus the alternate anesthesias, I was up and walking and heartily eating the same day. They had never seen this before!! But I had to negotiate on all of my supplements and I was only able to take 6 while in the hospital.

MsBliss · June 2010

Hi MBJ,

I read the treatise on morphine and cancer surgery, and I really wish I had read it before I had my two lumpectomies. I would have elected to go around the morphine infusion as well.

Maybe one day the protocols for cancer surgery will change. Right now the evidence is in that biopsies spread those badly behaving cells, surgery spreads cells, and morphine is problematic in that it suppresses our natural killer cells just when we need them most. I am glad that you got around that issue!

When I tell my onc about my sup protocol she supports me, but my surgeon is very old school and dismisses most of it. That is fine, I don't need to have his approval.

MsBliss · June 2010

Dear Mary,

I forgot to tell you about sulforaphanes. They are made from broccoli and broccoli sprouts and the full name is sulforaphane glycosinolate. Primarilly they are known as powerful phase 2 inducers which help the liver detox and purge so it works as super antioxidant as well. But now, they have discovered that they have an effect on bc stem cells. The data is new and I have to find the citation, but as soon as I do, I will post it for you. I originally bought it from my integrative doc but now buy a less expensive, less potent version from the internet; although I still buy the topical from my doctor. Honestly, I LOVE brocco sprouts but the cost is prohibitive to get enough on a daily basis so for now I am doing the capsules.

tibet · June 2010

Dear MsBliss,

I wonder where you read that surgery spreads the cells and biopsy too. If it is the case, they won't do the biopsy nor surgery. Do you mean, it is better clinically, not to do surgery nor chemo but do the natural things instead of surgery and chemo?

MsBliss · June 2010

Hi Newalex,

I should have been more clear about that statement. Actually, there is only a concern with regard to biopsy, less so for surgery, as doctors have a clear field during surgery and go for good margins. But some researchers and doctors are concerned that biopsies, especially if they are done aggressively or sloppily; the concern being will it push some cells out of the field or beyond the normal boundary. But it is a trade-off.....the biopsies are most often necessary and so is excision.

So what do we do? Well, make sure the surgeon or radiologist is aware of this risk and takes cautionary steps like using ultrasound to guide the needle and using the proper biopsy "gun" that sheaths the removed tissue. We can also use some alternative protocols that are very safe and may work in preventing the dislodged cells from getting a foot hold; modified citrus pectin is one of those as it interferes with galectin 3, which is a type of velcro that circulating tumor cells use to anchor to new sites. It is still in study too, so far, exceeding expectations (at MD Anderson).

I did not do any protocols because I did not know about the issue at the time. Later, I did some protocols and have slacked off for now.

I am not against biopsy or surgical excision no matter what any of these concerns have brought up. It is simply important to be informed.

MBJ · June 2010

I was initially very upset that my biopsies had caused my tumors to grow and expand. However, long after my surgery, I found out that since I had well differentiated tumors, it was good that they now had holes in them from the biopsy so that the chemo could kill them. I had nothing but a dead mass removed during surgery. Not all dr's are incredibly skilled, I was very lucky.

MsBliss · June 2010

Dear MBJ,

I had forgotten that you had experienced this issue. It is so wonderful that you finally found yourself in competent and smart hands.

MsBliss · June 2010

Dear Mary Jahn,

Here is the citation. It is from Life Extension Magazine.

I always take all nutritional advice with a grain of salt, but this looked very interesting:

Broccoli compound targets breast cancer stem cells

In research conducted at the University of Michigan, a compound known as sulforaphane, found in broccoli and broccoli sprouts, was demonstrated to target cancer stem cells in cell cultures and in mice. Cancer stem cells, which are not destroyed by chemotherapy, are believed to be involved in the ability of breast cancer to recur, grow and spread. "The existence of cancer stem cells (CSCs) in breast cancer has profound implications for cancer prevention," the authors note in their introductory remarks to their article, published in the May 1, 2010 issue of Clinical Cancer Research.

University of Michigan Comprehensive Cancer Center researcher Duxin Sun, PhD and colleagues injected varying concentrations of sulforaphane derived from broccoli extract into mice implanted with breast cancer tumors. The concentrations of sulforaphane tested were higher than those provided by normal consumption of broccoli or its sprouts.

Examination of the animals' tumors uncovered a substantial reduction in cancer stem cells, while normal cells did not appear to be significantly affected. Additionally, cancer cells derived from animals that received sulforaphane that were reimplanted into other mice failed to form tumors. Tests in cultured human breast cancer cells showed a similar reduction in cancer stem cells.

"Sulforaphane has been studied previously for its effects on cancer, but this study shows that its benefit is in inhibiting the breast cancer stem cells," stated Dr Sun, who is also an associate professor of pharmaceutical sciences at the University of Michigan College of Pharmacy. "This new insight suggests the potential of sulforaphane or broccoli extract to prevent or treat cancer by targeting the critical cancer stem cells."

"This research suggests a potential new treatment that could be combined with other compounds to target breast cancer stem cells," commented coauthor and Distinguished Professor of Oncology Max S. Wicha, MD, who directs the U-M Comprehensive Cancer Center. "Developing treatments that effectively target the cancer stem cell population is essential for improving outcomes."

MBJ · June 2010

MsBliss: Is there a particular recommended supplement for broccoli? I am eating it every week but not every day. Thanks!

MsBliss · June 2010

MBJ: well, as far as food goes, if you eat broc, cabbage, kale, brussel, etc, you are doing great, but you really need it on a daily basis, and according to the cited study, it is prob not quite strong enough to be a therapeutic dose.

I was buying a SGS sup from my doctor, but it is just too expensive even at twice the sulforaphane dose per capsule; same for the homocysteine support, of which I need to take to help with the liver detox phase 2, of which I am deficient. Now I buy substitutes for the homocysteine support and SGS from other manufacturers. I've tried a few of them--I like Source Naturals and Jarrow lately. What ever you do, stick to the manufacturers that have quality control and some sort of assay testing, otherwise, who knows what you are getting. I keep checking for other sources too, please let me know if you find a good one to add to the list.

MsBliss · June 2010

MBJ, forgive my memory, but did you try IPT? I've just been doing a little reading on it and other protocols.

MBJ · June 2010

Thanks MsBliss! I went to Vitmin City today and purchased their brand of 500 mg broccolli. Because I am also having a hard time affording all of the supplements I have to limit what I take. I do eat broccolli and brussel sprouts every week just not every day. What is IPT?

MsBliss · June 2010

IPT is insulin potentiation therapy. Make sure that the broccoli capsules that you buy contain sulforaphane.

MBJ · June 2010

MsBliss: I wrote down sulforaphane so that when I went to buy the broccoli capsules it had it in it:-)

TNBC, but No chemo, No rads, am I alone?

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