Is my case really TNBC?

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Anonymous
Anonymous Member Posts: 1,376

hello to everyone. i'm new to this forum. i am still trying to feel my way in here and still not familiar with the rules. i just need to have some support.

i recently underwent a right breast mastectomy about three weeks ago and my histopath report indicates that my case is IDC, nucl grade 3 with an almost triple negative immunohistochem report coz my ER & PR are very low, 5% & 3% respectively aside from a negative HER2. Am i to be considered as a triple negative case? I am about to undergo 2D echo, bloodworks, bone and CT scan next week and im at a loss as to what i should do next. Should i push thru with my chemo or not? what is the latest treatment procedure for my case, etc. so many questions on my mind. please help, i need your advice.

Comments

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,847
    edited October 2016

    Hello gmmiph,

    I have just read your post and wanted to say that back in 2005 I also underwent a right breast mastectomy, having been diagnosed with triple negative breast cancer. I was told that my ER was negative and that my PR at 5% was considered negligible and thus negative. I was also HER2 negative.

    Before beginning chemotherapy before surgery, I also had bone nuclide scan and a CT scan to see whether the cancer had spread from the breast. It had not. You should know your stage and the size of the tumour. Your tumour at 2cms is considered small.

    For triple negative breast cancer, chemotherapy and radiotherapy are the usual treatment. You should discuss all this with your oncologist. Ask about what drugs she intends to use and why and the regimen, whether weekly, two-weekly or three-weekly.

    You are welcome to join the thread I started in 2010, Calling all triple negative breast cancer patients in the UK. There are women from all different parts of the world here. You could also join Calling all TNs, which was started the same year.

    Take care and if you have any more questions, just ask.

    Best wishes.

    Sylvia

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2016

    hi Sylviaexmouthuk,

    thank you very much for your reply and the valuable info you gave about tnbc. i am about to undergo lab tests next week and based on the results of these tests, i am tentatively scheduled to undergo chemotherapy on november 3, 2016.

    it's good to know that there are cancer survivors like you with tnbc. it's been more than 10 years for you. for that, i consider you as my idol! haha! i'm still jolly coz i've not gone thru chemo yet. i've read some of the posts you've made in your own thread "Calling all tnbc's in the uk" along with the posts of other women around the world and i can see that you are a caring and supportive person. i appreciate very much what you are doing and hope there will be more like you. i would like to join your thread soon, but for now, i prefer to be here in my own thread for a short while so as not to get confused with the many posts in your thread and so that i can have more time to increase my knowledge about tnbc and be a more sensible 'chatter'. i hope you understand.

    from some of your posts in your thread, i can see that you are much interested in finding out if oestrogens receptors can be increased for tnbc cases so that they can have preventive hormonal therapy. however you already have a very long thread and i dont know if you already found out an answer to increasing er/pr, if there is such a procedure.

    i also would like to know what diet is best for tnbc cases and if there are helpful herbs that can aid in fighting tnbc. since i am about to undergo lab tests and not on chemo yet, i have started to take raw turmeric/curcumin with some peppercorns and honey to boost my immune system. my onco doc says it is ok to do so. she also said not to take to much carrot juice to avoid excessive beta carotene. i have also began taking flaxseed oil to have a plant-based omega 3 oil , hopefully to strengthen my heart as chemo drugs can be cardiotoxic. i have done these based on my own research as i have learned that countries like india, saudi arabia and sri lanka have low cancer mortality rates despite their huge populations. i think india dont eat much beef and most moslem people dont eat pork. i am not really sure. i also found out that most of these countries include turmeric in their diet so based on their eating habits, i am also trying to do the same. by the way, i am a filipina, asian. i hope you or anybody else have info on this.

    thanks again sylvia. hope to hear from you soon

  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited October 2016

    India does eat fish and lamb, and Muslims eat all meats other than pork as long as they’re certified “halal” (very similar to kosher). I remember reading that for many people (not just cancer patients but those at cardiovascular risk as well) a vegetable-and-fish-based Asian diet (with minimal amounts of low-glycemic-impact rice such as Basmati) may be healthier than even the standard Mediterranean diet which is higher in refined carbohydrates and sweeter fruits. (Sorry, no pancit, cheese buns or lumpia—my husband’s medical partner is Filipina and she cooks delicious examples all of those). Somewhere on these boards are citations to articles that TN cells are especially dependent upon both sugar and fat. As a TN patient you needn’t worry about soy, flax or estrogenic-acting herbs.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2016

    hi chisandy,

    i was about to go offline when i saw your post. i couldn't help smiling knowing you've had a taste of some filipino food. i hope you've already tasted adobo pork, the favorite filipino food, with plenty of soy sauce, vinegar, garlic, laurel leaves and peppercorns. with plenty of tomatoes, soy, garlic, ginger, peppers and other spices that filipinos have in their diet, i wonder why we are still currently no. 1 in asia for breast cancer and also high in lung cancer cases. as for me, i think i got my tnbc from genes coz my father, two uncles, a cousin doc, and a newborn nephew all died from different cancers. my age, 53, with no children, plus bosses who smoke, pollution and stress may have contributed to my tnbc.

    at present, after mastectomy and while waiting for my lab tests and chemo, my only weapon to fight cancer is to eat healthy. brown or red rice rich in fiber, fruits, vegetables, saltwater fishes, turmeric, flaxseed, less fatty foods, less sugar and plenty of rest. my general surgeon, who also studied cancer and the one who operated on me says i should put on more weight coz im a bit thin, although not underweight, and he also encourages me to eat meat for protein. this is one of my dillema coz i went to a naturopath who strictly prohibits meat, dairy and bakery products. i dont know how i can get enough protein from natural food when i cant eat meat. tofu was prohibited by my surgeon and onco doc coz it might cause rheumatism, which i think i already have in both of my knees. i dont know if supplementary amino acids can help but im afraid to try without doctor's advice. i've just began eating healthy when i was diagnosed for breast mass last february, reducing sugar and fatty foods and drinking 28 pieces of calamansi (lime) juice every morning on an empty stomach and then eating after an hour. i still do this although not regularly. from february to august, i've been doing this, and that was the time my breast lump began to grow although still small, from around 1.5 cm to 2.5 cm. i was adviced in february to undergo core needle biopsy but i was too afraid because of what happened to my father and cousin doc who had aggressive kidney and breast cancers respectively. i dont know if drinking lime juice and starving my cancer thru sugar/fats deprivation caused it to surface. so i was finally forced to undergo a frozen section mastectomy last sept 21. now, my next difficult decision is "shall i undergo chemotherapy?", knowing that it is not guaranteed to cure tnbc which is even harder to treat because of limited options. or shall i go natural and herbal? knowing that naturopathy clashes with conventional medicine on many issues.

    i hope someone, perhaps an angel, can give me a sensible advice on this.

    again, thank you chisandy for your support and for making me smile. God bless you and all the others in this community including sylvia. bye for now.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2016

    dear members,

    I have a question. Can estrogen and progesterone receptors be increased by natural hormone method? I've come across natural progesterone enhancement that helps estrogen receptors but i really dont understand how it works. Anyone here with knowledge on this?

    Thanks.


  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited October 2016

    Hi, gmmiph,

    We can drive ourselves crazy (and guilt-tripping) trying to figure out what may have “caused" our various ailments when it may have been due to heredity or even rotten luck. As a cardiologist's wife who has attended many lectures & seminars I do know, for example, that in South Central Asian (India, Pakistan, Bangladesh, Sri Lanka) populations, there is an elevated level of lipoprotein (a) (“lipo-little-a") that predisposes to both metabolic syndrome and heart disease, which cannot be explained away by diet and lifestyle--it occurs in people who are carnivores, vegetarians & vegans; moving to another country or continent doesn't affect it; and it is present in neonatal umbilical cord blood; therefore the cause is undoubtedly genetic. In my ethnic group (Ashkenazi Jewish), though I tested negative for any genetic mutations, there is a relatively high percentage of BRCA 1 & 2 mutations, which raises breast and ovarian cancer risk to as much as >50% and those tumors are likelier than not to be TN. I wouldn't be surprised to find out that in your case (as in the national bc rate in the Philippines), the cause is most likely genetic—although a particular mutation may not yet have been identified. Stress doesn't cause cancer, no matter what anyone will tell you. Mind-body ailments like IBS, tension headache, hypertension, even acceleration of heart disease maybe—but not cancer. If there's any dietary feature that is pathogenic, it's higher sodium intake—but for heart disease, not cancer.

    Wondering why you are consulting a naturopath, when you have a serious and relatively aggressive tumor. You need to return to allopathic (conventional) medicine because it is the only proven discipline in the field of oncology. It is not true that TN doesn't respond to chemo—in fact, its faster-dividing cells are likelier to be more responsive, and chemo is basically the only systemic TN treatment in the arsenal right now (absent some clinical trials). Your weapon to fight cancer right now till you get your labs back and start chemo is to get yourself into the best and strongest physical and immune shape you can. Rest, exercise, hydration, and adequate nutrition, especially protein. After an injury (and surgery, especially mastectomy, is a major injury) your body can’t heal itself without adequate high-quality complete protein (and that means animal protein). No need to eat dairy once you’re past age 2—especially if you’re lactose intolerant. You need balanced nutrition, and enough calories. Nobody needs sugar, white flour or rice flour, but whole grains, beans, vegetables and fruits should give you all the carbs you need. Fats that are primarily Omega-3 (read: monounsaturated, wild salmon & other fatty fish, grass-fed organic poultry, eggs, & mammal meats) are also essential for the health of your connective tissue, maintaining a healthy body mass index (you DO need some body fat) and digestion. Brown rice is better than white—be careful of the red, which can contain a yeast that mimics statins—which you don’t need unless your LDL-C is high. Antioxidant-containing foods are fine, especially now to protect your healthy cells, but once you begin chemo, avoid the supplements because they’d prevent damage to the very cells you need to destroy.

    You will gain some weight during chemo from the steroids you must take to protect yourself from side effects, but it’s not the same thing as the weight you gain beforehand from building a healthy muscle mass and adequate body fat. And if you’re among those who can’t eat well enough during chemo due to poor appetite and lose even more weight, you do need a bit of healthy fat-and-muscle cushioning before you start.

    May I ask why it took 6 months from diagnosis to surgery? That’s pretty concerning, especially with TN.


  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2016

    hi chisandy,

    Thank you for the overflowing wealth of info you just gave me. It is really comforting to know that there really are a lot of good people left in this world. Your dietary advice is really a confirmation of what my surgeon told me (he is my childhood friend). I consulted a famous naturopathy center here before my surgery just to have some sort of a second opinion and only for added info on cancer dietary requirements. I did it out of fear of surgery and chemo, but i still went through with my surgery anyway. You asked me why i delayed my surgery for about six month, the answer is FEAR. That was because my physician cousin who also had breast cancer stage llB,died after double mastectomy and two years of chemo followed by my father who died two years after removing a cancerous kidney and without going thru chemo because of age (67) and a stage 4 status. It was so frightening for me to see two loved ones die one after the other within a short period of time and neither surgery nor chemo helped them. I also am not aware of my tnbc, not until after the frozen section surgery and ensuing biopsy.

    My wholehearted appreciation to you ChiSandy for your nice advice.

    Take care and God bless.

    Gmmiph

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,847
    edited October 2016

    Hello gmmiph,

    I have been reading the other posts since I posted to you. I do hope you are not going to get confused with too much information.

    You are the only one that can make up your mind about your treatment. Focus on the fact that with TNBC receptor status more of us do survive than do not.

    You have already started your orthodox treatment by having surgery and you have got through that. You need to make up your mind about chemotherapy and then once this treatment begins you will settle into a routine that will keep you busy and you will end up hopefully with NED. This means there is no visual evidence of disease. You will then go on to have radiotherapy to mop up any cells that may have escaped. After that with TNBC you will have regular check ups to keep an eye on what is going on.

    Delaying treatment may make things worse, because you will not know what is going on inside your body. I did delay my treatment and took other things while doing so, but I would not advise that to other people.

    I do understand how you were full of fear, and of course we are all afraid when we get a diagnosis of cancer. You can get through chemotherapy, with its ups and downs, like the rest of us have. When I started chemotherapy I had to give my height and weight because the chemotherapy dose is based on that. I took the steroids given to take home with me for the three days prescribed and I had no nausea or sickness, just tiredness. My weight did not budge during my six months of chemotherapy. It was still the same as before treatment. You can do this.

    As for nutrition, we all have to make up our own minds. I eat healthily, lots of fruit and vegetables, organic if I can. I emphasise berries such as blueberries, and blackberries. With vegetables I emphasise members of the cabbage family, broccoli, Brussels sprouts, greens, kale etc. and do not overdo root vegetables.

    I do not eat any meat or dairy products. I eat wild oily fish and some cold water prawns. I have unsweetened almond drink, organic soy yoghurt and eat sauerkraut for a healthy gut. I also have nuts and seeds. From the beginning of my cancer treatment I have followed the Mediterranean diet and followed Chris Woollams of Cancer Active. You can sign up to his free email.

    During all of my treatment I also saw a homoeopathic consultant and took oral Iscador. I did this on the recommendation of my breast cancer consultant surgeon and the homoeopathic doctor worked with her.

    I hope this helps. Keep things simple in your mind. You do not need loads of information. Concentrate on one thing at a time. During chemotherapy keep hydrated, rest as you need and keep looking forward.

    Be positive about your receptor negative status. After treatment keep your immune system strong and it will get you through.

    Wishing you all the very best.

    Sylvia

  • 53nancy
    53nancy Member Posts: 497
    edited September 2017

    I am so thankful I have found this forum; I am five months past my initial abnormal mammogram and started using Essential Oils right away. After three biopsies (needle biopsy in May - probably benign, possible suspicious), excisional biopsy (lumpectomy in July - two cancers - High Grade DCIS and Grade 3 IDC), and now Sentinel Node Biopsy (Sept) and results have not come in yet from that one. The surgeon told me he expected the nodes to be clear, and the recovery room nurses told me he only took one. On September 8th, I was told I have TNBC. I have changed my diet, cutting out bad carbs and as much sugar as I can; my sugars are down and I feel good except for knowing about this diagnosis. Walking a lot and trying to prepare myself for whatever is to come. I have NO idea when I will even get to meet the "oncology team" and am trying to think of questions for them. It took eight weeks to get the hormone receptor status, so I am wondering if there was any doubt, but don't know if they would retest. I seriously do not want chemo; at my age (in my 60s), I want the coming years to be one of quality, not being sick all the time. I wonder how you all dealt with your feelings and came to your decisions about whether to take chemo. I am in Canada, so I am aware that treatments are different here, and because I live in a smaller community, I may not have the option of going to the big city, which is three hours one way. If any of you can suggest anything, I hope you can help me.

    Thank you for sharing your stories and, Sylviaexmouthuk, I love that you have had such a long run and would like to hear more. All the best to all of you in your journeys. I hope they prove to be a winning battle.

  • 53nancy
    53nancy Member Posts: 497
    edited October 2017

    gmmiph, I wonder if you had your hormone status rechecked. I wish they would do that with mine, as some of the original pathology reports from my first biopsy had errors in them. I was shocked, as I don't fit any of the categories - I am not pre-menopausal, not under 40, no African-American, not Hispanic. The only possibility as far as I can tell is that maybe I have the gene mutation; I do not know my mother's history. I am wishing you all the best in what you are facing, and can sympathize in every way with feelings about chemo. I will keep you in my thoughts and prayers.

  • Powerfulprayers
    Powerfulprayers Member Posts: 1
    edited September 2017

    Hello to all of you brave ladies. I have been lurking around the boards for a while . My mom and best friend has just been diagnosed with triple negative . She had a lumpectomy last week and all nodes are clear thank God. She will be seeing an oncologist next week and obviously is not thrilled at the chance that she may have to have chemo. I feel so deflated about the triple negative diagnosis as at her age (72) I was thinking that statistically she would not have triple negative but rather a slower growing type not requiring chemo. Anyway, even with clear lymph nodes and clear margins I am reading that chemo is the only way to go with triple negative . Was wondering if that has been the case for others and especially those at a more advanced age like my mom. Any info on how some of you have done on chemo over 70. She is pretty healthy and a trooper- she was cooking an hour after her lumpectomy and node dissection!

    Thanks


  • 53nancy
    53nancy Member Posts: 497
    edited September 2017

    Powerfulprayers, your friend must be in amazing health, which will help her all the way. I am 63 and doing everything I can to be as healthy as can be. I still do not have lymph node status since that biopsy on Sept 13th. The surgeon only took one node and now I have friends telling me to ask him to go in and take more! I don't see why because the treatment is chemo anyway. They seem to feel he can't say no chemo based on one node. I wasn't given an option re: lumpectomy vs mastectomy, and I had not researched enough to know all I have learned since. I would have opted for dbl mx. I hope everything goes well for your friend

  • Moderators
    Moderators Member Posts: 25,912
    edited September 2017

    Hi PowerfulPrayers-

    Welcome to BCO! We're so sorry to hear about your mom, we understand how difficult it can be to watch a loved one go through this. You might want to check out our Chemo forum, there's lots of good info there, and active threads where you can ask your question about chemo and TNBC: https://community.breastcancer.org/forum/69.

    The Mods

  • marijen
    marijen Member Posts: 3,731
    edited September 2017

    RE: Your question: Restore Estrogen receptors

    A Novel Combinatorial Epigenetic Therapy Using Resveratrol and Pterostilbene for Restoring Estrogen Receptor-α (ERα) Expression in ERα-Negative Breast Cancer Cells

    https://www.ncbi.nlm.nih.gov/pubmed/27159275

    May 2016

    gmmiph, Please tell me where you found the "natural progesterone ...that enhances estrogen receptors" comment. Pls?

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,847
    edited October 2017

    Hello 53nancy,

    I have just been reading through this thread and saw your post.

    I can understand all that you are going through since your recent diagnosis and wanted to support you and tell you that everything will settle down and you will get through any treatment that is offered. It is most important that you take charge of your particular case and not be afraid to ask questions. Remember this is your body and what happens to it is your decision.

    Do not be afraid that your diagnosis is TNBC. It can be treated. Most TNBC tumours are grade 3, but your tumour is small and that is good. You have not written what stage it is in your profile.

    After surgery you are probably being given time to recover before starting chemotherapy and/or radiotherapy. Do not be afraid to get in touch with your hospital and ask what is happening about chemotherapy. You will want to ask about a date for starting and what combination of drugs your oncologist is proposing to use.

    I had six months of chemotherapy back in 2005/6 when I was 63 and had a large tumour. I had the chemotherapy before surgery to shrink the tumour. I got through chemotherapy with very few problems, just tiredness. You can do the same and you must have a positive attitude. You will find you feel more settled once the treatment begins.

    You are welcome to join the thread I started over seven years ago Calling all triple negative breast patients in the UK. It turned out to have people on it from all over the world, including Canada.

    I hope this helps and let us know how you get on.

    Fond thoughts.

    Sylvia xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,847
    edited October 2017

    Hello Powerfulprayers,

    I have just read your post and wanted to send best wishes to you and your mother. Although they say TNBC affects mainly younger women, it seems it can affect them at any age. Do not be afraid about TNBC. She can get through chemotherapy. I was diagnosed at 63, as you can see from my previous post. The treatment for TNBC is surgery, chemotherapy and/or radiotherapy.

    You are welcome to join the thread I mentioned in the previous post or there is also Calling all TNs. You can get plenty of support on these two threads and plenty of information.

    Wishing you and your mum well.

    Fond thoughts.

    Sylvia xxxx

  • 53nancy
    53nancy Member Posts: 497
    edited October 2017

    sylviaexmouthuk, thanks SO much for your encouraging post. I love that you have had a god survival rate. I hope I will have good results also. I do not have my node biopsy results yet, so don't know my Stage either. I have friends who tell me he should have taken more nodes, that one wasn't enough! So am just taking things one day at a time and preparing for the worst while hoping for the best! :) Things here in Manitoba move slowly it seems, but I think the surgeon has also taken a cautious report. Thanks again.

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,847
    edited October 2017

    Hello to those viewing this thread. I am posting, because someone posted to gmmiph about her post that was posted back in October 2016. When posting you need to look at the date and year. gmmiph posted for quite some time on the thread I started seven years ago and then she suddenly stopped posting. We have had no recent news of her.

    Wishing all newly-diagnosed patients the very best and telling them there is life after treatment and that goes for all those who have been diagnosed with breast cancer. You should concentrate more on the type of breast cancer you have and not on the hormonal status. The most common breast cancer is invasive ductal carcinoma (IDC) and is used to describe breast cancer of no particular type. There are other kinds of breast cancer that are rarer, such as inflammatory breast cancer (IBC), lobular breast cancer (LBC) and metaplastic and medullary breast cancer.

    Whatever your hormonal status, be it oestrogen positive, progesterone positive and HER2- or triple positive (ER+, PR+, HER2+) or triple negative (ER-, PR-, HER2-), we all get the standard treatment of a mixture of surgery, chemotherapy and radiotherapy.

    With triple negative non-hormonal breast cancer, there is no medication post-treatment, such as tamoxifen and aromatase inhibitors that the hormonal breast cancer patients have and have to take for five to ten years. These drugs have side effects and are no picnic. Be POSITIVE about being NEGATIVE. You can get through this and after treatment you can do all in your power to make your immune system strong.

    I am now over twelve years since diagnosis with TNBC receptors. If I can do it you can all do it.

    Sending everyone best wishes.

    Sylvia xxxx

  • 53nancy
    53nancy Member Posts: 497
    edited October 2017

    sylviaexmouthuk, Just wanted to share my happy (ier) news. I saw my surgeon Oct 12/17 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. I was hoping for Stage IIB and I really expected it to be be Stage III. Stage I makes me feel so much more hopeful. The referral to Cancer Care was to be sent Friday, and I don't know how long I will have to wait to see them, 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, and I am told Cancer Care will not see me until they get the results of thise scans. I do know that sometimes it takes months to get in, so can only take it one day and step at a time and try to keep boosting my immune system.

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,847
    edited October 2017

    Hello 53nancy,

    I am glad you are happier with your good news and wish you well as you go through the rest of your treatment.

    Take care of yourself, be positive and keep looking forward.

    Best wishes.

    Sylvia

  • 53nancy
    53nancy Member Posts: 497
    edited October 2017

    Thabk you Sylvia. I go for a bone scan on Wednesday, and hope I will get in for theabdomen scan quickly as well

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