Lumpectomy Wed/opting out of radiation. Like minded...? :)

BethinRI

So, same old story I guess... 1/4 inch 7 o'clock R breast. (Found it myself, did thermog...bad story there!. I refused mammo). Surgeon yesterday...blah blah blah, he wants to radioactive dye and xray me first...to be sure he has the right lump. (HUH!????) Then do the lumpectomy, probably with a guide wire (to be sure he has the right lump!!? HUH x2!!) I hate Drs. Then biopsy several lymphnodes (now GENERAL anesthesia), which may or may not prove metastasis. Causing lymphedema? ...10% chance. Then 5 weeks of daily radiation.

Why does this seem so COUNTER intuitive? Why does everything in my being scream NO F'ING WAY!!?

I feel fine. I feel GREAT. Caught it early, it's small, unlikely to have metastasized, etc. So radiate the crap out of myself...? Skin, lung, bone cancer....broken rib? Really??
I am just agape.

Homeopath on Monday.

Changed my LIFE this past week... No more daily sangria, no more gluten, no crap, no more meat, no more DD, no more pizza, no more milk, no more chocolate, no more gas station snacks, no more diet pepsi, no more ANY of the shit I've eaten for the last 53 years! (I had already cut out/down a lot of this crap.) Now I only eat (organic) vegetables, chicken, bone broth, fruit, etc. Checking the labels even more carefully...did you know that both bacon and turkey bacon have sugar in them!!!??? Yeh...WTF! >:( l plan on losing another 30 lbs (lost 16 before Tgiving), regaining my YOUTH and my BEAUTY and my MOBILITY! Daily positive affirmations...because breast cancer is apparently "a lack of self love and nurturing in one's life." (TOTALLY ME!) Essential oils, Vit D3, Inositol, Iodine, black seed, turmeric, back to the gym, out in the sun, walking, massage, chiropractor... I feel GREAT!! Almost giddy!! I was freaked before the diagnosis, and up to it, as I guzzled my sangria. Now I'm just as happy as hell. Weird. HUH!?

So, I would like to talk with like minded women who have also opted out of the traditional protocol. Who have walked this walk. EVERY cell in me says NO radeeeeanything! Including muscle testing. I rock back...'no'. Every time.

Please.

Thanks.

Beth

mountainmama1973

Beth, I was diagnosed with high grade DCIS last October. My options were "Lumpectomy with radiation or mastectomy" neither of which felt even remotely right for me. So radical change in diet (raw 70% and vegetarian the other evening meal) loads of supplements (anti-inflammatory, immune stimulating,etc.) and daily exercise of some sort. Trying to maintain a positive, spiritual focus as well. Trying to eliminate stress...or deal with it calmly. I gave up all alcohol, most caffeine and every and all processed anything. Don't wear make-up anymore except on rare occassion. Don't dye my hair anymore....So BIG changes! I will likely have a lumpectomy (I have two sites of high grade DCIS) and my understanding from talking to an oncoplastic breast surgeon is that she needs the wires to find the lesion otherwise "it's like looking for a needle in a haystack". I too, was totally against getting more mammograms when I had 7 in two weeks back in OCT! But I guess the surgeon needs to do one to localize the lesions with the wires...Anyhow...I am going for a dedicated breast MRI in March and if that shows all is settled down and I DO NOT have high grade DCIS, then I won't do the lumpectomy. Will just monitor with dedicated MRI's. So you are NOT alone. No rads or chemo for me! I believe right or wrong that these modalities actually cause recurrences later on... No thanks!

BethinRI

Thank you MM!! UGGGHHH...huh!? >:(

I can totally believe that this has happened, feel like I brought it on myself...sugar, sugar, sugar, sangria, and SUGAR! But, I also feel like I somehow needed this to fix my life. I've been on a death course for a ling time!! I am cool with the wire, but don't understand the need...I have showed everyone the site myself. And why can't they just do an ultrasound guided lumpectomy, since the biopsy was done that way? I just can't understand why they're so quick to irradiate us!! Do they REALLY believe that it's safe, that it doesn't add up!!?? By the way, Chlorella will help remove the radiation from you. Mine is a DC, non invasive, and those other 3 things were positive. All good. {roll eyes}!! Let's stay in touch, I want to hear how yours goes.

BethinRI

And MM, you should consider using Frankincense, I am slopping it on (the site) every 30 mins!! I put it on my soles last night, think I aLLLLLmost slept well. And I totally agree with you about recurring later on!! Thanks for responding.

BethinRI

And, once they POKE it (4 chunks worth) hasn't that made it no longer 'encapsulated'. I worry that it's weeping cancer into me.

dtad

Hi Beth. I was diagnosed with IDC and ILC last March. Two small non aggressive tumors with no node involvement. Im 62 and already have a debilitating autoimmune disease. QOL is much more important to me than chance of recurrence. I did have a BMX but am refusing the anti hormones. I just can't add something that will make me feel worse. I am taking DIM to lower my estrogen naturally however. My choices are very unpopular on this forum so its nice to talk to someone with the same mind frame. Good luck and keep us posted....

BethinRI

HI dtad!

I am not yet familiar with all the LETTERS! Invasive Ductal Carcinoma. Figured that one out last night by looking at my paperwork. But...ILC? QOL? Bilateral Mastectomy X? DIM? Sorry!
Are you doing any oils? I just got my Young Living kit today...yay. I am infusing Frankincense now, going to put another by my bed. And I apply it every 30 minutes, to the site. Going to the Homeopath Tree of Life in MA, on Monday. Looking into cannabis oil, a friend said they tried it on her mother (suppositoires), but she was too advanced. The CHEMO killed her...renal failure. She died yesterday, while we were texting! (( Ugghhh.

So ...WHY do I feel so HAPPY!? God, I am practically atwitter. Waves of happiness. Weird? I assume that it is because now I no longer have to worry about getting cancer...? I am so relieved to be OUT of all that. I knew what I was doing was wrong, but I couldn't stop me. Now it's almost as if this was a gift. I have, and am, changing EVERYTHING! Was well on my way, but like...the dryer sheets and dish deterg got it this week. I am psyched to be skinny again! My essential oils neighbor says that it is because I am finally taking care of myself. Happy. ♥

I would be delighted to talk with you privately? Or on FB? I am on there all the time, would like to collect up some BCFs!! (Breast Canker Friends, we call it canker here.)

Unpopular? Huh. Bummer (for them).

I'm going to see what the homeopath says on Mon and make my next decision then. If he thinks that I can beat this without even a lumpectomy, then ...YAY! I just hope that mutilating it with a biopsy didn't/doesn't spread it.

THANKS!

mittmott

Radiation is to make sure they got all the cancer cells out after surgery. Dcis is not invasive. If you have invasive, size isn't what's important, how aggressive it is, is what's important, and yes they want to check the nodes. Going to the nodes does not mean mets.

I would follow surgeons wishes, and then get pathology back before deciding on hormonals, etc. But I would do surgery and rads. Why leave anything there to spread. It could take years, but I wouldn't take a chance and leave cancer cells in me. Rads is not so bad, I had it and had no ill effects Your choice, your body, but why leave something to grow that could kill you.

BethinRI

Hi mittmot, I worry more about what the radiation and radioactive die will do in terms of making MORE cancer...other cancer. Obviously there's a build up of toxicity causing this, more and worse toxicity doesn't seem right to me. Pretty sure I'm going to do the lumpectomy, but also pretty sure that I'm not going to do anything "rad" of any kind.

I have always been 'different'.

bluepearl

The radiation is actually much more protective of recurrences and over all mortality....even trumps mastectomies without radiation. Without radiation, you could face a 40% increase of recurrences. Radioactive dye is perfectly safe. Rogue cancer cells can escape into your lymph node, or by pass and go directly into your blood stream; radiation helps prevent this. No, biopsies do not make cancer spread. Most breast are lumpy so knowing exactly where that lumps is located helps the surgeon get it all...he isn't flying blind. Getting breast cancer doesn't mean you were not taking care of yourself. Many women have and still have gotten it. Many more, haven't and never got it. There are risk factors, but they are not 100%. And one thing I would like to say is we are NOT doctors. We are NOT cancer researchers. Cancer is a complex disease and often requires complex treatments, most of which most people cannot comprehend. It is much easier to say pickle juice works than get into the complexities of genome research into the structures of cancer cells and just how they work. That's why we have researchers and doctors to help guide us along and continue to find better treatments for the future. Compared to 30 years ago, cancer treatments have come a long way. In the 1950's, you lost your chest wall muscles automatically. In the 1850's, you were losing the same without anesthetic. And, you most likely died anyways. Not much was understood. I have an old 1890's medical book with all the "natural" remedies, but cancer was still considered a dreaded and terminal disease, as it often was in those days. But, we all make our own choices and must cope with the results....as did Mr. Jobs, with more money than God, refused conventional until his once, rare curable form of pancreatic cancer got away and conventional became merely palliative. If I get a toothache, I'm going to the expert who knows what to do about it.

BethinRI

Ahhhhhhhhh yes, dentists. SO fond of those too...and ALL of the amalgam in my head. Surprised it's not a BRAIN tumor!!!

BethinRI

My post IS in the "alternative" section...right?

ChiSandy

“Alternative" doesn’t necessarily mean forgoing ALL allopathic treatment. It isn’t a zero-sum game. Whatever works best while still preserving as much QOL is probably optimal. Complementary or integrative is the way to go, IMHO. I intend to use natural means as best I can (acupuncture, exercise, vites & minerals, meditation) to combat whatever SEs I get, but visualizing how the rads destroyed micromets and how AIs are starving those still remaining is quite satisfying to me.

Not all allopathic docs and not EVERYONE in the pharm industry are out to just make money.

abigail48

true. I have a wonderful friend on my fb list whose a ceo of a pharma co who just got permission to use his cancer pharm. he & his lover travel the world with the company profits, & he posts back fabulour photos which he shows us for free. would I take is pharma? not

BethinRI

Louise Hay has some NICE positive self love affirmations.

labelle

As others have noted, there is not a lot of support on this site for those who do not do what their doctors say. I did have a lumpectomy, and sentinel node biopsy (although I interviewed 3 surgeons before settling on one whose methods and demeanor I didn't hate). I had RADS but in the prone position (to spare my heart/left sided BC) and without doing the supraclavical or axially areas to spare among other things my testy thyroid. My radiologist who had planned to zap me everywhere said when I objected that it probably wouldn't matter anyway (than why was he going to radiate everything to begin with??). Others have chosen intrabrachial (spelling??) radiation, implanted in the breast but no scatter to worry about. There really are lots of treatment choices between none, alternative only or full speed ahead (the kitchen sink approach-throwing everything modern medicine has at it without regard to possible bad side effects).

Hormone suppressants are generally recommended for those w ER+ BC but I've chosen thus far not to do this, using diet/supplements and lifestyle changes to modulate estrogen instead. You may wish to have on oncotype test done it you are ER+ (usually done with tissue from the lumpectomy but it can be done with tissue from the core needle biopsy-mine was). This will give you a better idea of what kind of monster you are dealing with- a small cancer can be pretty indolent or truly aggressive and knowing this may give you a better idea as to just how far you want to go in terms of treatment options. Mine was a pretty lazy kind of cancer despite one node being positive. Had it been more aggressive I might have chosen more aggressive treatments-I certainly would have with a triple negative or her+ type cancer. Knowledge is power. Learn everything you can about your personal tumor, its genetic make-up, how aggressive it is or isn't, etc. before rejecting treatment choices out of hand and then demand the kind of treatments you're comfortable with.

BethinRI

Thank you Labelle, I was warned. And am not bulliable. I will ask about the Oncotype test, have it written down, saw it somewhere last night. Good info. Thank you!!

BethinRI

Need to figure out if I'm ER+.

Momine

Beth, before you make a final decision, I would urge you to go for a second opinion. The whole lumpectomy/biopsy thing sounds really convoluted. Have you had a needle biopsy? What is the exact DX as of now? Also, do keep in mind that just because a doc proposes XYZ treatment plan, you can "buy" one part and turn down others. In other words, you could have the lumpectomy, but refuse the sentinel node biopsy. You can also have the lumpectomy and refuse both the node biopsy and the rads. You are in charge here. Surgery by itself is curative in many cases of breast cancer. Especially in early stage cancers, it is far and away the most important treatment.

Italychick

I always thought I wouldn't do traditional treatment, but I did it. And a year later, I'm doing fine. Surgery alone has a really high impact on survival, so I second what Momine says, at least seriously consider the surgery part. I could not do radiation since I found out (as a surprise from my parents) that I had been radiated as a child for a non-operable growth on my spine. Radiation oncologist said with my stats he was okay with me not doing radiation (smallest margin around tumor was .5 cm, no node involvement). Oncologist said standard of care without radiation is mastectomy so I should be doing one. Breast surgeon said we will just monitor you.

It is hard, the pressure to do the entire treatment is intense, I won't lie. But stand your ground, do what you are comfortable with and make sure that if it comes back you won't have any regrets with what you chose, because there are no do overs. I'm throwing a lot of alternative stuff at my situation, but I will never know what works. In my heart I believe that a clean surgical outcome is the most important factor, but I have no data to back that up.

I did thermograms, etc. mine was flawed, said the wrong breast had cancer, and the cancerous one was fine. There are some of us out here who have combined traditional and unconventional treatments together. You really have to do what you are comfortable with. For me, surgery was a no brainer, I wanted the tumor gone.

abigail48

gary null also says surgery. but if you could tolerate it. no way I could/ I bleed now every dressing change though not a lot. cypress essential oil is said to help, usually forget. not that bad anyway

BethinRI

Hi Momine, yes. An ultrasound, and an ultrasound guided biopsy. "Invasive ductal carcinoma". I decided before he even finished his schpeel that I was opting out of radioactive dye, and radiation. Everything in me says NO. Homeopath tomorrow, I'm psyched! I meet w the surgeon on Tues, when I will tell him. Surgery on Wed, local anesthesia. That's where I'm at right now. We'll see what tomorrow brings.

BethinRI

TY Italychick, I had a thermography in July and it CLEARLY showed a hot spot. I ASKED what it was!! Report came back fine, 'come back in a year'. They (my phone HATES this format!!)...

bungled the whole F'ing thing!! >:( I have spoken to a lawyer, and need to fill out the report with Dept of Pub Health. I am schmeeering her on ALL social media!!! The tumor IS coming out!!

Italychick

BethinRI, once you get the tumor out, you will know more. What I learned is one step at a time! Only advice I might have is ask for wide margins around the tumor, it opens up your options. I told my surgeon I wanted one surgery, not multiple ones if at all possible. My growth was 1.3 cm. and they took out an 8 cm chunk on the left side of my breast. Now, there is only a slight indentation there which doesn't hardly even show, and definitely doesn't show under clothes. But I am a D or DD, depending on how fat I am so I had a lot of tissue to work with.

pipers_dream

Beth, as one more tx idea, look into extended fasting. I did a 21 day fast this past June, and the tumor shrunk some (I forewent all conventional) and my estrogen, which was sky high before, just dropped like a stone down into a well. I am 56, and was still not into menopause--was maybe getting irregular but had never missed a period since my last pregnancy. I started my period on the second day of the fast and then never had another one and hoping I'm not one of those souls who makes it to 11 months and then has one! I have every last menopause symptom and I'm probably the first woman in recorded history who actually likes hot flashes. Yay, my body is doing what it's supposed to do!

A fast will clear all that junk and crap out of your body and give it a fighting chance. There is lots of good research being done right now about fasting and cancer and Valter Longo is doing a lot of it. Read this to see about doing a 3 day fast to rewire your immune system. Since you say you need to lose weight and were addicted to sugar and junk, it may be a good option for you to consider.

I know what you mean though by being happier. It's because now you have a project and maybe even a mission. I think I always kind of thought like that too--I needed to be forced into taking care of myself and this sure did it. Not only am I slimmer and in a better mood most days but I have more dates than I ever had in my twenties, lol. Life is more fun, even if alcohol is way in my past--never was much of a drinker anyway but it sure would be nice to drink a beer every now and then.

windingshores

Just noticed that Beth has IDC and Mountainmama has DCIS (though high grade). I would feel differently about a cancer that was already invasive in terms of treatment (though high grade of DCIS would give me pause).

I actually think that these days, a mastectomy with sentinel node dissection is the most holistic way to go! It eliminates the need for radiation for most people. I personally had two mastectomies, separately, and go flat, and feel very "alternative"   If you want to avoid radiation, you might want to consider.   Radioactive dye is used to locate the sentinel nodes but it is gone with the surgery. It is possible to avoid pain meds entirely by having a paravertebral block, which also reduces anesthesia. I felt perfectly very soon- within an hour- after my surgery. I said not to all pain meds and had no pain due to the block. If you have more than one spot of cancer, a mastectomy might be a good way to go.

Your  posts about avoiding radiation or chemo or imaging don't really tell us much about your tumor. Grade, ki67, ER/PR, HER2, lymphovascular invasion etc.  And an Oncotype will give a score that really helps with treatment decisions and clarifies risks with and without hormonal treatments. If you don't have this score, it is hard to make decisions, these days.  More women are avoiding chemo due to this test, and docs are focusing more on the harm done by chemo done on tumors that are slow growing and therefore not really responsive to chemo. Oncotype also makes a distinction between risk of recurrence and risk of mortality: chemo may help with the former and hurt with the latter, especially with comorbidities, and docs are aware of this.

Also I went to 4 opinions: you could include a naturopath. It may be that refusing radiation is very reasonable. Talk to 3 or 4 radiation oncologists

If you don't have kids or people depending on you, I think that saying no is a personal choice. Even Time Magazine wrote about this option for DCIS, but for invasive, it really seems, to me, from whatever I have read, that there are risks not having radiation after lumpectomy. Up to you and you should be supported no matter what you choose.

I hope you gather as many opinions and as much information as you can tolerate before you make any permanent decisions.  If your whole body, and spirit says NOOO, maybe don't listen just for the time it takes to really research and investigate

And get an Oncotype Dx!!

abigail48

I see nothing alternative in the above post

BethinRI

Lumpectomy on Tues. I'll be glad to get it out, will ask for wide margins, etc. No rads, no dies...he agreed that in 5 more yrs things will have changed again, and understood why I want NONE of it!!

Momine

Beth, best wishes for an easy and uneventful surgery.

ChiSandy

I would consider most of the advice here in making a decision--except from Gary Null, who is a quack. He makes Joseph Mercola sound like the voice of science & reason.

Fasting, if it doesn't play havoc with your metabolism, for a short time could be beneficial. I also went to a much higher-dose probiotic (PerfectBiotics, 30 billion cells, 15 strains, shelf-stable) after finishing Keflex for a massive sebaceous cyst and then doxycycline for a stubborn asthmatic bronchitis caused by a cold turning into a bacterial sinus infection that decided to obey the laws of gravity. But refusing to biopsy your sentinel nodes is playing with fire. I notice most on these boards from Stage I who had small IDC tumors of grade 1 or 2 yet still progressed to Stage IV were node-positive. It's as important to know your nodal status as it is to know your hormone-receptor and HER2-expression status. Without at least a SNB you are in the dark. The radioactive dye is very short-acting, and you probably can just go with the blue dye to locate the sentinel nodes.

As to paravertebral block instead of a general (I have a very small airway and didn't want to risk damaging my vocal folds with intubation), I had lobbied for that--until I remembered I have scoliosis. For my first knee replacement, the first couple of attempts to place the epidural catheter resulted in excruciating lightning-type pain because my epidural space wasn't where it would normally be; for my second knee replacement, they had to place the epidural with fluoroscopic guidance--which involves radiation exposure for a longer time than the momentary zap of a diagnostic X-ray. (Remember how back in the '50s every GP and pediatrician had fluoroscopes in their office and used them liberally? Or how even some shoe stores used them to fit kids' shoes to their bone structure? Oy).

I'm a big believer in limiting radiation exposure to instances when there's no other way to diagnose, and to destroy leftover local tumor cells not susceptible to chemo. I even convinced my dentist to forgo bite-wing x-rays for another year.

abigail48

radiation oy indeed. my parents friend a radiologist alerted us in I guess 1948 or so that those shoe floroscopes which fascinated me were uncool. re garding gary null as a quack, who among us is also running marathons at age 70??