natural girls
Comments
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Barry, I'm so sorry to hear of your situation. Could you spell out what the abbreviations mean?
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barry, I too am so sorry that you're dealing with another dx. I need help with the abbreviations also. I don't know what RSD is or PMPS. Did you get a copy of your pathology report? It's good to have your own copy. It will give the details of what they think it is that they found. If it's slow growing, I'd expect that your grade is 1, not 3. And then there's the dozens of different kinds of bc -- IDC, ILC, IBC, on and on.
For your options in the alternative realm, I think Knockout is a must-read for that topic. Your options will partially hinge on where you live, and what you think will be of most benefit, and the amount of financial resources you can tap.
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MattyGroves...
PMPS...Post-mastectomy pain syndrome (PMPS) is a chronic pain condition, typically neuropathic in nature, which can occur following surgery to the breast...
If you want to know more about this check out the Surgery Threads on Pain Syndrome.
RSD...What Causes RSD?
According to the National Institute of Neurological Disorders and Stroke (NINDS), RSD is "a chronic pain condition that is believed to be the result of dysfunction in the central or peripheral nervous systems."
According to MedicineNet, RSD involves "irritation and abnormal excitation of nervous tissue, leading to abnormal impulses along nerves that affect blood vessels and skin."
After breaking my wrist several years ago, I have RSD in my hand and wrist, which puts me at risk for getting it in other places in my body. It can spread.
If you can imagine...your body feels like it's on fire...literally.0 -
vivre, I'm wondering if anyone's done an analysis that compares the nutritional damage of frozen food vs heated food. The critics of pastuerized dairy complain that the heating to high temperatures destroys much of the nutritional value of the products. Can't help but wonder how broth boiled for 20 minutes would be different. Conversely, I seem to recall that fruits and veggies from the frozen section tend to get a thumbs up from a lot of people who write about food.
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Barry: I just saw your post and I as so sorry to hear this! There isn't a cure for BC so doing anything alternative might, only just might, keep it from growing but it may not and it could cause more problems down the road. I go to Dr. Galizter in the Knockout book and he told me that unfortunately chemo and MX were the only way I would survive. Although I do not have a slow growing cancer, and there are many things alternative that can prevent cancer, I for one could not imagine a lifetime of daily monitoring myself and having the constant fear. Best of luck whatever you decide to do--Do get 3 opinions first before making any other decisions. Hugs.
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I can blackberry jam every summer as blackberries grow wild everywhere on our island. I always used sugar in the past, this year will try with agave instead. Canning is really simple. You just have to be careful to keep the glass etc...sterile. I'm trying to recall about nutritional content of canned vs. frozen. I think most of the nutrients stay in as the jar is sealed? I know with tomatoes, cooked ones actually are the only way to release lycopene (I think).
MBJ- nice to see your smiling face. I'm off to make more of your coconut cookies! I added a drizzle of water last time and they were a little more fudge-like and didn't crumble when at room temp. Everyone in my house begs for more!
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Designermom: Thank you and you are welcome!
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Vivre-I work for the county extension office and I would use a pressure cooking method for canning the vegetable broth as some vegetables are low acid and the water bath method would not reach a high enough temperature for food safety guidelines. I have not thought to do vegetable broth but now think I will start doing it because I know I would use it. I put up all kinds of veges in the summer time.
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Sherryc ~ I love my pressure cooker! How do you use it for canning?
Today I had a friend mention DCA...Do any of you well-read ladies have any knowledge/experience with it?
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I really like the idea of using all the veggies before they go bad in my refrig and make a broth out of them... wow how great not to waste the veggies or the money spent on them. Great idea!
I've done both canning and freezing of veggies. With the broth I'm not sure if the hot water bath would be ok. With green beans I always had to use a pressure caner. Tomatoes because of the acid, I would use the hot water bath. Someone asked about putting wax on top of the jars. This is used only for jelly that I'm aware of. But with jelly, I use the canning jar lids instead to make sure they really seal.
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Barry,
We are rooting for you. Take a week or so to let the options sink in. Don't make up your mind too quickly. You might feel differently once you get used to the idea.
Do you know of anyone else with your nerve condition that has had a mastectomy? Is there an online group for RSD? Has your surgeon ever done a mast to anyone with RSD? There must be surgeons who specialize in people with conditions like yours.
Hugs...
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Barry - I feel for you so much as you're struggling with what to decide. May I ask why your surgeon doesn't want to do nipple-sparing? It may be that he's not familiar enough with doing it... can you get a second opinion from a surgeon who routinely does NSM (nipple-sparing mx)?
I can tell you that for me, psychologically, skin-and-NSM has made ALLLLLL the difference in my being accepting and even glad of my mx. If I were past childbearing age, I probably would have had double NSM with fat-graft reconstruction (so it's my own fat creating the breast in a way that's minimally invasive). The only reason I didn't was because I want to breast-feed.
As for doing only alternative... here's why I ultimately decided I couldn't chance that. I know myself. I know that at some point, someday, I would slip and have a bit of sugar or want to eat a potato. I might go through times of stress or depression (after all, I have decades left to live). In other words, no matter how hard-core alternative I would try to be, for me personally, I wouldn't be able to stand the pressure of having to be perfect, 100% of the time.
I remember reading all the accounts of women saying how relieved they felt after their mx. I couldn't relate to that, since I "only" had DCIS. Even though ultimately I realized I had to get a mx, I was 100% sure I'd feel nothing but regret and depression afterward.
Well, guess what... I, too, have felt that same elation and relief! It's not nearly as terrible as it seems like beforehand, especially if you find a surgeon who IS willing to do NSM.
BTW, I had posted the week before my mx that my surgeon was VERY discouraging against NSM. He looked at me almost in anger and asked why in the world I wanted to try to save my nipple. But, I insisted... and I'm so very happy I did. Psychologically, you wouldn't believe the difference it makes.
You know that we natural girls will support you 100% no matter what you decide! But, I wanted to give you the perspective of someone who dreaded-dreaded-dreaded getting a mx (I was willing to do infinite more reexcisions to avoid it!), and now that I'm on the other side, I've changed my tune 100%.
Think of it this way. Right now, your IDC is very small. Your chances are best NOW of finding someone who will do nipple-sparing. If you wait and the cancer happens to grow, you might lose that opportunity.
I had another thought related to the fungal theory but the thought has left the building... I'll edit or reply again if I think of what I was going to say! LOL
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Suzanne-Look for a Ball canning cookbook. I bought one at walmart but you can probably order it off of their website. It is full of recipes and instructions on how to use the pressure cooker. For each recipe it tells you which method to use pressure or water bath or if it is ok for both it and will give you the instructions for each method. Very easy to follow.
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thanks for the canning info! I still feel a little intimidated and don't have a large enough pot, but it's definitely on my list of things to work my way up to...
Barry- I hope you find what you are looking for, in terms of advice. I myself cannot support the idea of only alternative treatment for invasive cancer- I, as a pre-teen, watched my mother, a skilled herbalist and nutritionist, die after making this very decision. If it doesn't go well, it may be too late for more than just a lumpectomy, or saving the nipple, by the time you reconsider. I beleive that diet and supplements can make a huge difference, but I don't think they can actually kill or stop active cancer cells. I do the things I do to keep the few remaining cells (post surgery and chemo), which are dormant, from getting frisky and motivated. But there may be those out there who have made it. I don't know.
I would consider talking to others with chronic pain issues about surgeries, though. I have severe tendonitis, fibro and MCS and was very worried about the same issues as you are. While many people with these issues do have a harder time after surgery, not all do. I haven't had a harder time than lots of non-injured folks, with post surgery pain or even with my implants. Check out our sick-folk thread- http://community.breastcancer.org/forum/108/topic/754362?page=7#idx_204 - for more people to talk to about this part.
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Julia, Crunchy...and everyone thanks. The only reason I would consider doing only alternative is because this is a lower grade cancer than my dcis grade 3. I'm surprised that a low grade cancer would be invasive. If this cancer was high grade it would be out tomorrow.
Although for peace of mind it would be nice to just cut it out and be done with it. I thought about telling my surgeon that if she didn't do a lumpectomy or mx leaving the nipple then I wouldn't do it at all. Maybe she would change her mind. She is one of the best breast surgeons around.0 -
Dear sweet barry... I'm only saying this because I care about you... but low-grade invasive cancer is still invasive. To me, it wouldn't matter if it's invading the rest of my body/bloodstream at a slower rate. I would want it OUT before it had the chance to invade.
Just my two cents and then I'll shut up. (you know I'm such a big believer in alternative, and I personally wouldn't do chemo/rads/tamox even if recommended, but surgery is the one very obvious, immediate, effective way to get this cancer out of us before it's too late......)
Oh, and I totally agree with insisting to your surgeon that you get lumpectomy or NSM and even threatening not to do surgery at all if she doesn't. BTW, I met with fantastic surgeons with great reputations who don't do NSM's so they recommend against them. It's well worth finding a surgeon who is not only a great breast surgeon, but a great NSM surgeon.
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Barry: I second everything crunchypoodlemama has posted! BTW: I was elated after the cancer was out of my body! After all of my fears and worries I would rather have it gone then die of cancer. Do the alternative things to assist your care or find a PS who specializes in NSMX. But don't let the cancer get into other areas of your body!
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BArry I agree with crunchypoodle and mbj about surgery (even though I am doing rads). If I had it to do over again I would have a mx and no rads, thats just me not all that attached to my boobs and figure they make really good fake ones I would not mind having. I have had problems with rads and personally just not worth it. Also I was looking at my blookwork since my lump and every time I have it done my tumor markers go down even further. The markers are in the very low range which is good. I have also committed to exercise and even though I did not have a horrible diet I am constantly trying to change and make it healthier.
On another note, I will be finished with my rads next Monday. My RO wants me to continue using the prescr cream that he gave me and I have used this whole time for a couple of weeks after finishing. Then he said he wants me to use a good Vitamin E based cream for a couple of months. Any suggestion on a good Vitamin E based cream that will be really good for my cooked boob?
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http://www.lef.org/Vitamins-Supplements/Item01502/Skin-Restoring-Ceramides-with-Lipowheat.html
A lovely new discovery!!! FABULOUS!
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Thanks, Lorraine! Good to hear from you! Are you actually using this product yet? I wonder if a supplement like this contains any gluten, and if it would have any noticeable affect on those of us who try to avoid or have cut back on wheat? Deanna
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Yesterday my energy was completely gone. I felt like all I could do was lay on my back...it was very weird and not like me. As I wondered what could be wrong with me, I remembered that I had run out of my first bottle of Iodoral about a week or so ago, and was waiting for a new bottle to arrive in the mail. Do you think that could be responsible for my total lack of energy all of a sudden?
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suzanne: I have had the same reaction to my not having my Iodoral. I think our bodies get used to it--too much and we are a jittery mess, not enough and I can't even get out of bed but worse, my brain doesn't work. The good news, you should see immediate results when back on it.
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Wow, Suzanne, that happened to me too when I let mine run out before I ordered more. Also, if I feel myself getting really depressed and hopeless, it's usually because I haven't had pastured eggs in a few days! So wild how nutrients (or lack thereof) can directly affect our energy and moods.
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FOR THOSE OF YOU ABOUT TO UNDERGO SURGERY OR WHO HAVE CHRONIC PAIN ISSUES: I just wanted to share: Before both of my surgeries a friend gave me a CD "Healing From Surgery" by Peggy Huddleston and I attribute my fast healing and complication free surgeries to listening to this cd several times before going to sleep the week before procedures. It works on the brain at a very deep level promoting the body to heal. It can also be used for after surgery or any time you are in any sort of pain.
I also want to share what Life Extensions recommends for supplements specifically for those having cancer related surgeries. My anesthesiologist for my MX did exactly what I asked and I had a blissful and wonderful experience. My exchange surgery anesthesiologist ignored my requests and I was very nauseous due to the drugs she switched up on me--The key is NO MORPHINE and using Tramodol and a local in it's place--I hope this helps someone here:
SUPPLEMENTS & SURGERY:
RECOMMENDED FIVE DAYS PRIOR TO SURGERY BY LIFE EXTENSIONS:
Modified Citrus Pectin 14.4 grams day, Tagamet (800 mg of cimetidine), PSK- 3 grams day, IP6 500 MG, garlic, AHCC, glutamine, lactoferrin, mistletoe, interferon-alpha, granulocyte-macrophage, interleukin-2, genistein, silibinin, chrysin, EGCG, curcumin,Coenzyme Q10 100 Mg, Pycnogenol 50 MG
GENERAL ANESTHESIA +REGIONAL ANESTHESIA: TRAMADOL - NO MORPHINE!
Begin taking the following supplements at least 5 days prior to surgery:
- Glutamine: 3000 mg per day away from food
- IP6 (inositol hexaphosphate): 1-3 grams per day
- AHCC (active hexose correlated compound): 3000 mg per day
- Lactoferrin: 300-900 mg per day
- PSK (protein bound polysaccharide K (Coriolus): 3000 mg per day
- Cimetidine: 800 mg before bedtime
- Modified Citrus Pectin: 14-30 grams per day away from food
- Soy isoflavones (genistein): 100-200 mg per day with food
- Silibinin (component of milk thistle): 500-600 mg per day
- Chrysin: 1000 mg per day
- Green Tea: 650-1000 mg of EGCG per day
- Curcumin: BCM-95® extract: 400 mg per day with food OR 2500 mg per day of a regular curcumin supplement
Please Note: Different curcumin formulations will differ in their absorption and bioavailability. These differences in absorption can affect the suggested doses. For example, one type of curcumin - called BCM-95 - has studies documenting that 400 mg of BCM-95 curcumin compound can provide curcumin blood levels equal to ingesting 2,500-2,800 mg of regular curcumin supplements.
- Resveratrol: 25mg before surgery; increase to 100-250mg 2 weeks after surgery
- Quercetin: 500-1000 mg per day
Avoid the following supplements for 2 weeks prior to surgery and begin taking 2 weeks after surgery:
- Garlic: 1200-2400 mg per day with food
- Fish oil: 4000 mg per day with food
- Vitamin E: 400-800iu per day with food
- Feverfew: 250 mg per day
Prescription Drugs:
Pharmaceuticals prescribed prior to surgery depend on the status of the individual cancer patient. Patients with low white blood count are typically treated with granulocyte colony-stimulating growth (GCF) factors such as Neupogen® (300-480 micrograms per day) or Neulasta® (6 mg) which lasts 3 weeks. Other pharmaceutical compounds which have shown benefits for cancer patients undergoing surgery are interferon alpha and Interleukin 2.
- Neupogen®: 300-480 micrograms per day OR Neulasta®: 6 mg, which lasts 3 weeks
- Interferon alpha: 0.5 to 3 million IU
- Interleukin 2: 1 to 6 million IU
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Deanna!
I just ordered some, so will let you know. To be honest, I so want to try something to re-hydrate from within, I am willing to ignore the gluten issue! Sorry if that doesn't help!
L
ox
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Just got results back from my hair mineral test. Now adding Molybedum to my roster of supplements. I had very, very high copper so upping my zinc intake as well, per my nutritionist. All in all, it was very interesting to see the results.
I also got my Estronex test back as well. My Hydroxyestrogen ratio looks good, but did have note that my bone turnover rate was high. We are addressing some of my minerals that were "low" on the spectrum first, then we'll address what could be causing high bone turnover rate......
I must say that it has been very interesting working with a nutritionist. Not sure how much longer I can afford to do it, but nonetheless I have learned a lot.
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Hi Barry,
The thing that worries me about your diagnosis is that you've already had two recurrences, or is that only one recurrence and the other was missed in the first operation? Either way, it has shown you that it wants to keep coming back in multiple areas and that sounds pretty aggressive to me.
My priority was to get the beast out and not leave any breast tissue for it to make a home in again. I do feel great relief since having the bilateral and have no regrets. I do hope you can find some resolution that feels right for you.
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Just came across this link posted as a new topic and thought it was worth re-posting here, as so many of us have been using or are interested in using some form of BHRT since our bc dx:
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What worries me about these studies is they are looking at the effects of bc and not the cause. Therefore, they want to halt or limit production of our important hormones by cutting out our ovaries, etc. I am on BHRT (progesterone). I missed picking up my prescription this month and it is enormously evident! I dont know if I (or my family) could live like this for one more month...just sayin'.
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Geewhiz and Painterly - Thanks so much for the tips on Milk thistle and also the liver protection plan. Although I've slacked off to no exercise, I do lots of water, fruits and vegetables. Guess it's time to all but cut out alchohol, my last bad habit ! (I'm also hoping that the test results were just an error.)
Any suggestions about the quantity of SAMe ?
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