TRIPLE POSITIVE GROUP
Comments
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susieq are you sure wornoutmom has mets? I don't think she's been on the boards since 2010. I believe she moved to a forum with just alternative folks.0
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Lago - she has been on here this year. It was Eve who posted that she had mets.
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Mornin' girls!!! Any plans for the weekend?
I just went to the kitchen and it looks like hell. grrrrrr 2 boys and 1 husband and I seem to be the only one who knows how to clean up after myself?
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nance - Is there a good breast surgeon in your area? I would suggest going to someone who specializes in breast cancer surgery. Also, when I had my surgery they checked the margins around the tumor during the surgery to make sure they were 'clear'. The pathologist told my surgeon that one of the margins was clear but narrow so my surgeon removed a bit more to be sure. I think this 'real time' pathology can help prevent having to go back in for a reexcision. I don't know how common it is though.0
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Omaz: My surgeon did the same thing...when the margins were all clear, she actually took quite a bit more, just to be sure. Then she moved the tissue around so I don't have a big void there. When they got in there, they found a tiny satellite tumor that didn't show up and she got that little devil too. As much as I DREADED having all those toxins put in my system, thus far, I have no regrets.
Boy, it is HOT here in Central Florida today!
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Arlene - That satellite had a cloaking device! Sneaky sneaky! Good she got it.0
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Omaz: You crack me up! Thanks for the laugh.
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Susie, Actually wornoutmon was stage 111 when she posted on the alternative threads. After her mastectomy they found a lump near the scar area that spread to the nodes, and probably like cool breeze it had already spread to the liver, although not discovered early. Coolbreeze was on chemo and then herceptin all year before finding out she had liver mets. wornoutmom btw was on herceptin and alternatives. She also had low dose chemo at the alternative cancer center that she went to with other alternative procedures the whole time. She doesn't quite fit in the only alternative medicine catergory. Wornoutmom liver mets is gone. Most of her bone mets has also disappeared. Her tumor markers are almost normal. She contributes her success to her aggressive treatment to fighting the disease. She also contributes her success to juicing, eating right, and other alternative treatment.
My other alternative friend with skin cancer is keeping her treatment under wraps for good reason. I just know whatever she is doing it's working for her.
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I have a surgeon who is considerd one of the best here. I am a little put out that I wasn't told before the bone and ct scan that she ordered that they were not able to totally rule out metastisis. I since have talked to an oncologist (friend) and the radiologist who both said there could be metastisis that wasn't found. I hate that I did those scans rather than just do the tumor marker tests (15-3 and 27-29) which I just did on Wednesday, waiting for results. I am deciding whether to push the surgery back a week or 10 days to have a good vacation with my daughter before she goes to college. I got this cream(mg gm) which is supposed to be an alternative to Arimidex which I am using until the surgery. The doctor prescribed Arimidex, but I opted out of that. Too many decisions and feeling pressed for time.
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nance - It was about 5 weeks between my diagnosis and surgery, just to give a time line. I had a breast MRI before surgery.0
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Treatment decisions are so personal. Adding the case histories of other women on these boards isnt always helpful to women who are considering their options. They will go their own way irrespective of the experience of others. I am going with Tonlee's post: do the research, make your decisions and we (on this board) will be here to support you whatever you decide to do.
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Jackboo..
I respectfully disagree. Of course the decisions ....all of them...should be made with as much researach as possible but the experiences and results of other BC survivors is invaluable. That's true of my entire life. i have learned more from these forums than I have from all the other sources combined. And I read everything I can about BC. They should never be the sole source .
Keep your suggestions and experiences coming ladies....All of them. They've helped me enormously and I'll say it again. I had neo adjuvant chemo and my tumor melted away with TCH chemo. Of course I don't know what the future will bring nor do I know longterm effects of treatment but I kow it worked or me . It's important to Nance and others to know that.
BTW Nance,
There is no accurate tumor marker test for BC.0 -
Ashla's post reminded me of something I didn't mention in my post. My primary tumor was 3 cm at first. After four cycles of A/C, it measured at 1.6 cm. I haven't had it measured since I started the Taxotere.
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I know there is no accurate tumor marker test, but I guess there is no accurate scan either.
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Ashla - I love reading stories like yours!!
I think it is important to relate other's experiences - they are here for anyone to read anyway.
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nancedawg the reason why the scans can't rule out metastisis 100% is because they can only detect cancer once it has reached a certain size. They can not spot micromets. It's just our technology hasn't caught up. It still doesn't mean you are not mets free. As far as we know you are.0
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I wonder about all of these scans and tests. My integrative meds Dr. wanted me to do the tumor marker tests because she says the scans are just big money makers for the Dr's and their friends and are not better than the tumor marker tests which are much cheaper. After she told me that the onc and the radiologist basically told me the same thing. It makes me feel like a sucker for getting everything the Dr. ordered. Fearing a long road of that ahead.
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Nance - having scans when you are diagnosed is important to see if the bc has already spread. Of course the results will determine your treatment. Most of us have them. I had a CT scan and a bone scan after surgery and a chest Xray before surgery. I asked my onc about tumour markers and he said they are not reliable for bc. If they were out to make money off us for scans they would be doing them every year - they don't.
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I only know what she told me. They are both unreliable apparently. I do see lots of people on this forum having many scans. I bought it and had them. I just don't know if that was a good decision after how the onc, radiologist, and integrative med Dr. reacted to the fact that I had had them. They all immediately said that those results DID NOT mean no metastasis. Yes, they show the cancer if it is large, but I do think, in retrospect, your body might tell you about metastasis as soon as these scans will. I am not a Dr., so of course I am just speculating from my personal frame of reference.
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Susie, you are more into traditional medicine than I and that has worked for you so far, and I truly hope it continues. I am actually not into medicine of any kind. I birthed my kids at home. My kids are not immunized. I don't go to the Dr. I was totally hoping I would die one day and not know I was sick. Unfortunately, that is not the case. I now have big decisions to make, but I am not really confident in modern medicine or Drs. You probably think something in my past made me feel this way, but actually it is just many years of doing research on big pharma and how they market immunizations and drugs for all diseases, cancer included, and how Drs foster this behavior. You might dispute this, but it is a fact. I do not think all Drs are like this, but unfortunately many are. I know there are many successes with these drugs which makes my decision complicated. I also know there are many failures where the treatment kills the patient or impairs them to the point they wish they were dead. I am sure I am not the first person to feel like this, but maybe I am the first person to express it here.
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Hi nance, I never went to drs much either till I w dx with BC, I was a fit, healthy slim 40 yr old, breast fed my average birth weight babies, no risk factors for BC I was in shock when I found a lump, I waited a few weeks thinking it would go away but unfortunately it didn't. I found it quite over whelming at first, finding a medical team I felt confident in was really important for me and based on clinical evidence they supplied I went with lumpectmy, chemo, herceptin and rads.......without treatment my prognosis wasn't so good, but with the treatment I'm very optimistic I'll make old bones. Chemo wasn't as bad as I expected and i never experienced any infections due to low blood counts, and I went back to work full- time when I started rads, i was fortunate and had no skin break down and I had no SE from herceptin my EF was 73 as a baseline and 67 when I finished.
I' m now 31/2yrs since dx and I have no long term SE from treatment. I'm fit and healthy, don't take any prescription meds now and my immune system is great, never catch the bugs going around. my Onc adviced against hormone therapy for me as my hormone receptors were low and as I had low bone density from chemopause, my periods have returnedand my bone density is improving. The only scans I have ever had was when I was first dx for staging, I only see my Onc once a year and my bs once a year now, no bloods or scans.
Just wanted to share my BC story and wish you well with whatever route you decide to take, it's a personal choice ans as long as your comfortable that is al that matters.
Lou0 -
Thanks for your response Lou. It sounds like you have had a very positive experience with your treatment. It is always good to hear every side while making this life changing decision.
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Nancedawg...I understand your frustration. Those who are triple positive, who are dx with the HER2+++ who are well aware this is a serious and aggressive cancer and for that reason just about all of them chose conventional meds. You might find more support on the alternative threads. I come here because I've wrestled with questions regarding HER2+++ and Herceptin. I'm not always in the same camp here, but I've come to appreciate my bc sisters, who struggled as well through all this. Plus, I felt someone who was doing Herceptin alone should record their plight. In the near future, I believe bc women will be offered Herceptin without chemo and those with early stage a shorter term of Herceptin.
I prefer alternative intervention, but I'm not going to throw conventional medicine completely out with the bathwater. I've been dx 4 times with breast cancer. Because most of my cancer was either noninvasive or a non agressive idc cancer, I didn't see the need to do more than surgery. Other than cleaning up my diet somewhat, I didn't need to do any extreme alternative therapy either. If I had gotten a masectomy the first time around, I wouldn't be where I am now. I've learned that any grade 3 is aggressive, plus the multifocal DCIS I had the second time should had pushed me, especially a yr ago, when I got insurance to do the masectomy. I'm just saying, we' can't ignore our cancer dx and hope it just goes away. How we deal with it is ultimately up to us.
Cancer can be tricky and difficult to get rid of. I do feel if there is a bad spot on the apple you need to cut it out with super wide margins.
Treatment, I'm not sure if I would do it again or not. I'll cross that bridge when and if the time comes. Like you, I prefer to be well until the day I die. I'm not afraid of dying because I'm confident I'm passing from life to life. I'll just step out of this life into glory. I do want to live my life feeling well. For now, I'll do the best I can to take care of myself.
All to say, nance, hopefully whatever you decide you will agressively treat your cancer, whether it be conventional or alternative or both. If we are ill or sick it would be foolish to do nothing. It could be compared to a bear in a trap. The bear has a problem and without intervention, he's doomed. Sometimes, we need assistance to freedom from the disease so as not to be inflicted with this wasting disease. btw...i"m not into vacinations either
Before bc, I was rarely ill or got the ful or anything. BC said to me something was wrong in Dodge City...my body was making cancer cells so something wasn't right in me. We're on your side. What are yours stats? How did you discover you have cancer? I would love to hear your story. And whatever you decide most here will support your decision. (((hugs)))
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Ok, kind of a topic change. I am curious about this baby business.
How many women breastfed? I nursed my first son 11 months, then one day he sat up, and was just done. He went straight to a cup. I had literally an entire deep freeze full of milk. I produced TONS of it.
My second son came a couple months early. I nursed him 18 months but had "just enough" to feed him. No extra. AND I remember rubbing my right boob at the 11 spot because it wasn't as engorged as my left, and it felt "clogged." In fact, when I first felt the lump I thought, hmmmm, I know its been 5 years, but I wonder if that milk duct somehow got infected.
Uh, yeah. The river DeNile.
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To add in regard to scans, there is controvery regarding the mammogram. I was told it wasn't much more radiation that you get in a day in the sunlight or a plane flight. Hopefully this is true. If I didn't have the mammo in the fall of 2007, I'm not sure I would be here now. My first cancer was close to my chest wall, far right breast close to my under my arm. If I had not gotten the mammo then I believe it would had become invasive and spread.
My oncologist also said she wanted initial scans to have a base line. I had them all. I could see her point. She also said she' doesn't do muga's because we are exposed to enough radiation without add more unnecessary radiation and for that reason she, and most doctors in my area all do echo's. My oncologist also said it was highly unlikely I would even know I had mets before a year. You can't see micro mets or anything under 3 mmm. This is true in when they found multifocal in my second lumpectomy path report I had 3mm high grade como type cancer cells throughout the tissue taken ( a lot)...and that didn't show up on the mammo or the mri.
For me, I would want to be scanned for peace of mind. The idea of being NED (no evidence of disease) is a comfort. If I were to find mets, I would want to find it early and if possible cut it out. Then there's friends, who found out they had cancer a week or days before they died. Most of the time, they lived normal lives. Not a bad way to go either. But, now that I' know, I'm vulnerable to cancer, I don't know if I could passively walk away, ignorning possible symptoms.
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Tonlee - I breastfed my first for about eleven months and my second for about nine. I remember using my left side a lot more. I think it was just more comfortable, being right-handed. My IDC was in the right side. Both my mom and I had big babies, both had BC. Her sister had five-pounders and had BC at 41. Her other sister had BC at 63, no kids. We are all fairly tall - 5'6" to 5'9".
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Tonlee, I nursed my daughter 6 months and she screamed after breathfeeding her. Her pedi-thought she might be allergic to my milk so he put her on formula and she was happy. I did breast feed her at night until she was 12 months and she too pushed me away. One day, she was done. My right breast didn't give out as much milk as my left breast. My son, 21 months younger than my daughter, breast fed for 18 months. I had a hard time pulling him away. I did have a breast infection after he was born because tje nurse kept giving him water. My right nipple was inverted since age 13. Doctors always asked about it. I said it was normal. I was exposed to a lot of radiation at age 12 because they thought I had TB. Didn't. Also to add, my first baby 7.6 lbs. and my son 8 lbs. I gained 18 carrying my daughter and about 20 lbs carrying my son. I wore a waisted dress from the hospital both times.
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TonLee, my first was 7 lb 8 breastfed him till 10 months till he refused to breastfed anymore, my second was 7lb breastfed her till 18 months, had heaps of milk both times.
I've given up thinking about why I got BC, I've always been into health and fitness and was very strict with my diet, I never smoked and rarely drank alchohol, didn't take the pill had my kids in my 20's and no family history........just bad luck I think.
I've actually become more relaxed about diet and exersice post dx, I tend to eat a lot more chocolate now as I love it and enjoy just running around with the kids rather than a hard gym session. I guess I have found more balance in my life post BC, which is a good thing, happier home life.0 -
Loulou,
I'm not trying to figure out how I got it necessarily....just curious about things we all have in common. (Nursing specifically because I was told it reduces the risk of breast cancer by some really high percentage...maybe 50%, I can't remember.) There are too many variables imo to ever really know for sure. Cancer runs in my family. Both sides. I don't think I could have done anything to prevent it.
I'm starting to believe that it's all just one big fat guessing game anyway.
LAGO...quick question. How long did you wear your band? It's driving me nuts!
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tonlee - glad your exchange went smoothly, I am so glad! I have been out of town at my Her2+ vaccine trial thing, so have not been posting. I gather we are all discussing birthweight and breastfeeding - I was a small baby, under 6 lbs. My first was 22" and 7lbs., 2oz. and breastfed for about 6 months. He is now 6'4" at 24 years old, I am 5'2". My second was 19" and 6 lbs., 10 oz. and was breastfed for about 2 months, and is now 5'6" at 23 years old. I did take birth control pills after she was born because there are only 18 months between them! I lost my first pregnancy at the half-way point due to a fetal death (no miscarriage) and there would have only been 15 months between that one and my son, so I was concerned about getting pregnant again too quickly. I experienced problems with breast milk when I started BC pills - so I switched her to formula at that point. An aside, both successful pregnancies occurred when I was over 30 - I know they always ask about age at onset of periods and pregnancies after 30.
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