"You Are NOT Going To Die From This!"

I saw the first Oncologist/Surgeon today. My friend Chance, whose mother died of lung cancer two years ago, went along with me since Rob had just started a new job and Cameron was out of state. Here are the notes that Chance took for my family in case anyone here is interested. I'm tired and don't feel like retyping all of this, so I'm going to cut and paste. 

This may be more information than any of you want to know, so scroll on by if you want, but it's looking very positive!

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OK -- some quick updates, we can talk in more detail later. This is a fairly invasive cancer. The biopsy showed 21% of the sampled cells were in a state of mitosis --20% is considered high. This means it's urgent, but not necessarily scary.

The crucial next steps are MRI and surgery. MRI involves injecting a dye called gadolinium, which of course makes mom uncomfortable, but it's a step that could eliminate the need for 4 additional biopsies of suspect nodes in the breast. If the nodes light up in the MRI, they'll need to be biopsied to verify whether they need to be removed. If they do, it's probably going to be a mastectomy / full breast removal.

(NOTE FROM ANNIE: AFTER SEVERAL HOURS OF RESEARCH, I HAVE DECIDED NOT TO DO THIS MRI. I'M MORE AFRAID OF THE GADOLINIUM AT THIS POINT THAN I AM OF THE CANCER. IT APPEARS TO HAVE HORRIBLE LONG-LASTING DETRIMENTAL SIDE EFFECTS. IF I WERE YOUNG AND IF I DID NOT HAVE MCS, I MAY CONSIDER IT BUT I'VE DECIDED IT'S NOT WORTH THE CRAP SHOOT)

The surgery they're talking about doing is an “interval lumpectomy” next week — basically, get the known cancer out and get an analysis going. Mom is to understand that further surgeries may be required, but she can go on her trip to Spain after an interval lumpectomy unless the findings are very very bad.

Once they get the tumor out they will send it to California for genomic analysis which will tell us whether or not this particular tumor has genes the code for metastatic “skills”, like the ability to easily enter the vascular systems in the same way immune-system oriented cells can.

That’s very important for determining risk.

Chemotherapy is looking unlikely at this point, but radiation sounds like it’s going to be hard to avoid.

(NOTE FROM ANNIE: I'M ALSO HESITANT ABOUT RADIATION. IT'S ONE OF THE THINGS I WANT TO THINK ABOUT WHILE ON CAMINO)

Prognosis for the surgery itself is 98% . (HOORAY!)

They are going to put her in touch with an oncology radiologist who can answer her questions about that stuff and the gadolinium.

The lumpectomy would also get the hematoma out, so she would heal faster.

(NOTE: I'VE DEVELOPED A LARGE HEMATOMA WHICH IS QUITE PAINFUL)

The prognosis sounds reasonable and we suspect that she may have the option of opting for a full mastectomy instead of lumpectomy plus radiation.

Recurrance expectations:

Lumpectomy: 20-40% w/o radiation; 2-5% with radiation (but then there are the effects of the radiation!)

Mastectomy: 1-3% with no chemo, no radiation

She has an appointment Feb 10th for a second opinion for Dr. Nathalie.

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Annie's comments. I was so grateful to have Chance go with me. He knew all the questions to ask and he took great notes. He was a wonderful support.

The surgeon I saw today told me at the end of the appointment that her family all live in Spain!!! She was young and very kind and spent a lot of time with me. I was thinking I'd have Nathalie Johnson do the surgery, but this new doctor also has my heart. I'll still see Nathalie for a 2nd opinion, but I"m leaning toward letting De La Melana do the lumpectomy. I trust her. She said IF I decide to have radiation I can have it after I return from Spain.

I have decided I will NOT do the MRI because I fear the contrast gadolinium more than I fear the cancer. I'll have the lumpectomy then just keep an eye out for any new lumps. Hopefully there will be none. Anyway.. that's about it. I am pooped!

I've pretty much decided I will not do the VDLP this year as I will not be able to carry pack so soon after the lumpectomy.

At least up on the Frances, I can do pack transport most of the way.

The best thing the doctor said all during the appointment was, "You are NOT going to die from this!"

I liked that part.

Breast Surgeon Appointment

Today I managed to get an appointment with one of the most respected Breast Surgeons in Portland, Oregon!  Her name is Dr. Nathalie Johnson and she is a breast cancer thriver herself! I've spoken with more than one person who has seen her and loved her. I'm sure I'll lover her too! Plus, we BOTH lived in St. Thomas, USVI!

My appointment is on February 10 so it's getting close to Camino time.  Let's hope she gives me the ok to take some time to mull over my options! Keeping my fingers crossed!

Still reading "The Metabolic Approach to Cancer" and feeling more and more strong about continuing on clean KETO.

With the right diet and the everyday long distance walking on the Camino, I'm feeling very positive about healing from this.  I've often carried other people's prayers to Santiago. This year I'll be including my own.

Annie

Annie's New Adventure - Papillary Invasive Carcinoma

I know most of you are here to read about the Camino Santiago, and I promise, we'll get to that as I have a plan to fly to Madrid on March 4 to continue my Via de la Plata.

But I also thought I'd like to document my new journey and adventure, for myself and for others. And this seems the best place to do it. When a person with MCS gets into any type of stressful situation, they tend to get brain fog and forget things.  And these are dates and events I want to keep track of. So this post is for ME as well as for anyone going through this journey themselves.

Chrismas night, while lying out in the Arizona room at Joe's desert house, it was cold. I laid on my side in a fetal position to try and get warm quickly. As I ran my right hand up my left side, it suddenly encountered a bizarre "bump" just left of my breast, not quite under my arm, at about 2:30 if you were facing me. I'm a country girl and as far as size, I was thinking in terms of what I know and figured it was about the size of a 22 caliber shell, long and narrow.

 I thought, "What the hell is THAT!?"

It didn't hurt. It was totally silent. I had no idea it was there, how long it had been there, how long it had been quietly growing. I do regular breast checks in the shower, but had never felt it. It was hiding under the fatty breast tissue but because I was lying on my side, that tissue had fallen toward the bed, and by golly, there the little bugger was!

I didn't panic. And honestly, I still have not felt panic or fear. But I did feel a bit of a sense of urgency to find out what the heck this was.

I live in Oregon and we have state insurance called OHP (Oregon Health Plan). Because I was on Federal Disability until it rolled over to Social Security when I 'became of age," 80% of my medical costs are covered by SSI, and the remaining 20% are covered mostly by OHP.

I was in California for the holidays. BUT, I needed to find out a bit more about this "bump." So I called around and got an appointment at E Clinic for January 3 - the soonest I could get in.

Jan 3, 2020 (Friday), I saw the doc at E. She ordered a Mammogram and Ultrasound for January 6.  At the ultrasound, the radiologist seemed concerned and call in her supervisor, who took a look.  The "bump" looked suspiciously malignant, and so a biopsy was ordered by my doctor.

Just to be sure, I called OHP in Oregon, explained the situation, and asked if the biopsy would be covered if done in California. I was told it would need to be done in Oregon. 

Jan 3, 2020 I called O and spoke with D at their Breast Clinic. They would need an order from the Physician who examined me, and they would need my films from the Mammogram and Ultrasound to proceed.  They scheduled me for a biopsy on 10 January 2020, Friday, under the assumption they would receive the films by then.  They faxed the request for the Order to the doc at E and received it.

I signed releases (online) for the films, the releases were faxed to the records department at E with a STAT request that very day. It was a Friday. I was told the records should be at O by Monday morning. Once they had my records, they could order the biopsy in Oregon.

January 5, 2020 (Sunday) My son flew me up to Portland, Oregon. I stayed at Joe's condo.

January 7, 2020 (Tuesday) . I called O. No records. I called Tina in Medical Records at E. She assured me the records would go out FedEx Overnight TONIGHT.

January 8, 2020 (Wednesday). I called O.  No records.  I called Tina again. Tina spoke with her employee who had put the records in the regular snail mail box!  WTF!?  I was not very happy and she promised they would go retrieve the film and get it in the FedEx Overnight TONIGHT!

January 9, 2020 (Thursday). I called O.  No records.   I called Tina at E and they HAD been sent and so I got the tracking number and called FedEx.  The package had been delivered to O, handed to someone at O and they gave me the name on the signature. M. Matheson. I called O Records Department. Nobody knew who this person was. It was not an employee. They had lost my films!

January 10, 2020 (Friday) . Nobody could find my films. At this point, I had lost faith in O. I looked up Breast Clinics in Portland and found that P had one and it was right up the road from Joe's condo . I called them. I would need a Primary Care Physician to order a biopsy. Because I have MCS and NEVER see an allopath, I don't HAVE a PCP. What to do? I decided to go to a walk-in clinic and try to secure a PCP. By this time it was late in the afternoon so I planned to go first thing next morning.

January 11, 2020 (Saturday) I walked into the P Clinic. I got in quite quickly and told the nurse my story. She had gone through a breast cancer scare and became my advocate. She spoke with her doctor, who came into the room and told me there was no need for him to examine me, and that he could not order the biopsy, BUT there was a doctor in the building who had agreed to see me on Monday and his office would call me with an appointment.  Later that day, I got a call from Dr. M's office at the M clinic. I had an appointment for Monday morning at 10 am.

January 13, 2020 (Monday) I went to my appointment at 10 am with Dr. M. He set me up with the Breast Clinic at P. I would be getting a call from them. He was very nice and personable and I really appreciated him doing this for me!  I got a call from the Breast Center giving me an appointment for a biopsy the following Monday. I was not too happy it was being put off that long, but WAS happy to at least get in. Around 2 pm I got a call from DF, the Breast Imaging Navigator at P Clinic. What a nice lady!  I told her about my biopsy being NEXT Monday and she said she'd try to get it moved up. She soon called back and told me my targeted ultrasound biopsy was set for 2 pm Friday the 17th at P.

January 14, 15, 16 were long days of waiting. On January 17, 2020 (Friday) I went in for the Targeted Ultrasound Biopsy. It was done by a very nice doctor, Dr. B. Originally, it had been set for THREE separate biopsies; the large lump I'd found, and two smaller places they'd seen on the ultrasound. They also planned on putting in titanium markers in each spot. Due to my MCS, and due to the "titanium" markers containing nickel, I was fearful of the markers. I pretty much knew I'd have a reaction to them and then they'd have to be cut out. Besides that, once they were in, it would require yet another mammogram (more radiation) to be sure they were placed properly. Since I did not plan on having radiation at all, there was no reason to place these, so I asked him NOT to place them. I also asked that he only do the biopsy on the one large lump.  He agreed.

Boy, Holy Hell!  I'm glad I didn't get the other places biopsied and in retrospect, I greatly regret having the biopsy at all!  It was not painful - but the resulting pain was not good.

I had noticed 2 large veins on the outer side of that left breast and he must have nicked them, because within hours of the biopsy, my breast began bleeding under the skin and slowly became black. In addition, the lump that had been the size of a little 22 shell, swelled up to the size of a large walnut!  They gave me no pain medicine, but told me to take aspirin. Really?  I was in pain Saturday, Sunday, and Monday all day. It was excruciating to get up and walk. Any movement at all nearly put me in tears. On Tuesday, shocked at how the black under the skin of my breast continued to grow, I went to the hospital and had DF take a look.  She said it was a hematoma and told me to use ice/heat/ice/heat, which I have continued to do. She did manage to get me a prescription for 4 Vicodin, which in the end I did not take.

Where am I?

20 January 2020 Monday I got a call from Dr. M's office asking me to come in Tuesday morning to talk to the doctor. I asked if my lab reports had come back. They said yes, the preliminary report had come back but only the doctor could tell me the results.  Great... 24 hours of waiting.

21 January 2020 Tuesday, my son took off work and we went to the appointment. The doctor said the lab had called him and it was "most likely" a malignant cancer but he had no more information. This was a little frustrating because this was telling me nothing new I didn't already know.  I asked him to please CALL me when he got the final lab report.

22 January 2020 Wednesday the doctor called with the diagnosis. 
Invasive Papillary Carcinoma
Estrogen Receptor Positive (+)
HER2 Negative (-)

The good news is this cancer, from what I've read, is a slow growing cancer with a good survival rate. The ER+ state means it LIKES estrogen (no more rbST dairy products EVER!!!). The HER2 is a gene protein marker on the membrane and I'm not sure yet what this means.

Later that day M Clinic called me with an appointment with a Dr. TM an Oncologist. My appointment is Thursday at her Office.  I am also asking for an appointment with NJ, a Breast Surgeon who has HAD breast cancer and who works in the L system.

Once I speak with these two doctors and hear what they have to say, I will make a firm decision on my course of action.

Right now, I do NOT plan on having chemo OR radiation.  I worked on the Oncology Floor (that's where I got sick with my MCS) and have seen too many people die from chemo, rather than from their cancer. I had an uncle whose lungs were burned by radiation treatment. That killed him, not the cancer. I've probably spoken to several hundred women with breast cancer in the past couple of weeks, some doing traditional therapy and some not and I've decided that with my MCS, chemo is NOT an option for me. I'm still exploring targeted radiation but since this lump is so near my heart, I'm not likely to have it. 

Instead, I plan on taking a naturopathic path, using diet, meditation and exercise. QUALITY of life is more important to me, at least now. I want to live, but I want to live happily, and until I found this freaking lump, I felt just fine. Who knows how long it had been there or how long it could take to grow if I had just left it alone.

I have to admit to feeling a bit overwhelmed at the moment trying to figure out diet.  There are two camps I'm exploring, KETO and Plant Based Diet.  I was really enjoying being on KETO and had lost quite a few pounds, but now am wondering if the hormones in the meat had anything to do with the lump growing. I have seen movies and documentaries and videos where people claim KETO cured their cancer. I've seen movies and documentaries and videos making the same claim for a plant based diet. So I'm conflicted right now and haven't made a firm decision yet.

I'm using CBD oil on the lump and ingesting it also. The one I'm using now is a 25:1 ratio of CBD/THC because THC causes my type of cancer to grow.

I'm using Frankincense oil on the hematoma and on the soles of my feet to try to move the blood out.

I'm still looking for the right Morning, MidDay, and Evening guided healing meditations. If anyone knows of a good one, I'm open to suggestions.

I copied the list of question for the Oncologist from the book Chris Beat Cancer. Chris is one of the people who healed his cancer using a plant based diet and his questions are good ones. I hope the Oncologist will be open to answering them.

Tomorrow I will go to the M Clinic to get a hard copy of my lab report. For some reason, they will not put it up on MyChart.

Thursday, I will get a 1.5 hour massage to get rid of some of the stress I'm feeling from sorting through all of this information, then will see the Oncologist.  One son will be out of town, the other just started a new position at work and I don't want them to take off. I have a friend of my son's who will go with me to the Oncologist appointment. His mother died from cancer a few years ago and he has done a lot of research. He will be a good advocate.

I'm humbled by the amount of support I've gotten online from my Camino Santiago Forum group and other folks. With this many people sending up prayers and positive energy, I can't fail to heal!

So... that's where I am in this brand new journey ...

OH!  I almost forgot!

Joe and I have tickets to Madrid for March 4.
Our pan was to pick up our walk on the VDLP, walk up to Astorga, and finish off in Segovia for Holy Week. I still plan on taking that trip!  The walking will do me good. However, I may have to pop up to the Camino Frances if I'm unable to carry a pack because of this painful hematoma. I'm hoping that by the time a month passes, it will have shrunk and healed more.

So stay tuned ... I'll post when I know more on Thursday.

Buen Camino!
Annie

A Scare - Asking for Your Thoughts and Prayers

Christmas night I found a lump in my left breast.

After a mammogram and ultrasound, the Radiologist's report says he suspects it is malignant. It's a little scary to hear that word, but they CAN be wrong, so I'm not going to get too excited yet.

My biopsy is Friday afternoon at 2 pm.

Any thoughts and prayers and positive energy you can send my way will be greatly appreciated.

I have plans to fly to Spain March 3 to finish the VDLP with Joe.
I'd like to keep that plan in place.

Love,

Annie