Diagnosed with "small 0.7cm" IDC, MRI showing 8.6 cm

ed111

Anyone with large MRI results here?

2D mammo in January showed nothing. I kept bugging them feeling something is not quite right, they did 3D, saw 'something very small', then ultrasound with biopsy, confirmed IDC 0.7cm. All good. I went to Dana Farber where they told me I have nowhere to rush, can go on travel vacation if I want. I pressed for MRI. MRI showed 8.6 cm with clear nodes. Now running for second opinion to another breast center and likely will stay there.

So 'almost nothing' that 2D did not detect turned out to be 8.6 cm. How is it even possible.

new2bc

Hi ed111,

Do you have dense breasts? Dense breasts do not show well when mammogram is done. They show cloudy areas hiding suspicious areas. I have been told to trust an MRI more than a mammogram or ultrasound. Also I have heard that ILC which is another form of breast cancer does not show in a mammogram. Sometimes, people have combination of different types of cancer such as DCIS and IDC in the same breast which may not show up totally when screening is done. If biopsy is performed on the area that has IDC cancer, you are only told you have IDC after biopsy but a few millimeters away could be DCIS which was not picked up by the needle. The final accurate result is revealed after the surgery showing the size and the type of cancer. I was told after the biopsy that my cancer is ILC. But after surgery it was tested to be IDC and multifocal. My small tumors did not show up in the mammogram as well as MRI but were revealed after the surgery.

I am glad that you are proactive and are trying to get to the bottom of this. I would not delay further and find a place you can trust with good doctors to have a treatment plan in place. I hope this helps.

ed111

Thank you, new2bc! Yeah, go for surgery as soon as possible. It's just interesting how 2D picks up nothing. I pressed them to do 3D, because I could actually fill the bump, and noted nipple inversion, but 2D was "clear". Quite possible two different things in there. Or that little one has grown out after biopsy.

Denise-G

Do you have dense breast tissue? My sister's BC was not seen on 3D mammogram except for something very small that did not appear to be cancer. The radiologist biopsied only because myself and my mom were diagnosed. Thankfully, he did as she had a 4 cm tumor and was Stage 3c by the time it was found as she had many, many nodes.

I hear from women all the time with dense breast tissue that had very large tumors that were not seen. It is beyond scary.

here is a great website for info - www.areyoudense.org

ed111

Funny, I do not. There are scattered fybros, but not dense. 3D and ultrasound showed the same ~1 cm round mass. I begin to wonder if it mushroomed after biopsy... Because that what it is now on MRI, a 8.6 cm mushroom at the front, with it's root in depth where biopsy was taken. Otherwise, it's a mystery.

jessie123

My tumor did not show up on mammogram --- the ultrasound showed it to be 1.3 cm. After lumpectomy it turned out to be 2.5 cm --- I think the MRI also showed around 2.5 cm.

Rah2464

Ed111 so glad you pushed for your diagnosis. I had dense breasts so my cancer did not show on 3D imaging or ultrasound. I had a wonderful breast surgeon who listened to me and was diagnosed with an MRI. When I questioned about the imaging miss, my surgeon said that imaging is only about 98% diagnostic. I had this false sense of security that as long as I was getting imaged, well then I didn't have to check my self so carefully. But like you, I pushed when I suspected something was wrong which is what we all have to do. We know our bodies best.

ed111

I'm still waiting. It's hard to believe, with this size on MRI. Dana Farber told me wait is 6 weeks, and I didn't feel on the same page with the surgeon. Went to another big center, was told 3 weeks, one has passed, still not scheduled and no communications. Made a full circle and went back to my local hospital. Hopefully in two weeks. I could push for diagnosis, but have made a profoundly wrong choice for treatment, should've never gone big center route. They became factory mills. Continue with supplements, teas, diet and high doze vit C. It palpably shrank a bit, but of course still there.

bettysgirl

Mine was the same. Mamo showed as 1 cm. My surgeon asked for MRI that showed it at 4 cm. At surgery a month later it was 5 cm. The explanation I got after surgery and pathology was that mine was IDC but had lobular features. The breast specialist said that lobular has a higher tendency to hide on mammograms. Mine was also a high rade and it could have grown between the mri and surgery but between the time of the first biopsy to surgery it had gotten to the place where it was very easy to feel. Hard to believe that was going on 11 years ago!

Beesy_The_Other_One

ed111,

My tumor was HER2 positive and was clearly exploding in growth at the time of diagnosis, but did it really grow from 1.5 cm to 7 cm in two weeks? Note below that in December I had an ultrasound on the 10th and an MRI on the 13th. The ultrasound measured the tumor's largest dimension as 8 mm and the MRI three days later measured it at 1.3 cm. My oncologist did the original MRI in August because he wanted me to qualify for Perjeta. Boy, did I! He looked pretty ashen the next time I saw him. I would say that, in my experience, based on the December imaging alone, MRI exaggerates.

8/15/18 Biopsy Ultrasound---1.5 x 1 x 1 cm

8/30/18 MRI----------------------7 x 2 x 3.4 cm (!!!!)

11/12/18 Ultrasound-----------1.1 x 0.6 x 0.4 cm

12/10/18 Ultrasound------------0.8 x 0.7 x 0.3 cm

12/13/18 MRI---------------------1.3 cm at largest point (radiologist did not record other 2 measurements)

As a note of encouragement, on 1/31/19, I had surgery. The pathologist found evidence of a tumor bed and the clip placed at biopsy--but no cancer cells. I found this site during treatment and I clung to these stories where chemo and targeted therapies decimated HUGE tumors, some bigger than mine. I also agree wholeheartedly about what has been said above about dense breasts. On mammography, mine were white, and clearly the 3D mammograms were missing the cancer that had to have been there at least the year before, and according to my doctor, earlier. Like Rah2464 above, I had a false sense of security because I was getting 3D mammography regularly. Hah.

I would keep pressing for the appointment but know you're doing all you can. That's all we can do each day, and as many on this site say all the time, we don't have to be brave--we just need to show up. Hugs to you . . .

Beesy

ed111

Beesy -- wow! Thank you for that, what a story. I've been in three places already, neither offered anything but surgery. I'm at full stop with my local hospital going for central lumpectomy. I admire their surgical team for a courage to deviate from protocol, which two large centers didn't consider, and offering breast conservation even though protocol dictates anything > 5 cm is automatically mx.

I'm now scheduling and paying out of pocket for yet another MRI which my surgeon doesn't want to order cause I feel there is more to see before the surgery. My last MRI with that 8.6cm was 1.5 month ago. After a rapid palpable growth which frustrated me a lot, I see my tumor suddenly shrinking in front of my eyes. I do high dozes vit C IV protocol and set of anti-cancer supplements. My surgeon doesn't believe in these things and says nothing new is going to show on MRI that would change the plan. I feel otherwise ). My nipple is no longer inverted, which is hard to believe indeed. The primary tumor palpably shrank to original size. So I asked my intergation med dr to order MRI, found an imaging place where price is not astronomical, and will try to deliver results to my hospital before the surgery. Cancer is a very strange thing....

new2bc

ed111,

I wish you the best of luck. What supplements do you take and what dosage?

new2bc

ed111,

I wish you the best of luck. What supplements do you take and what dosage?

ed111

new2bc -- thank you! I read up high dozes vit C protocol, examples

https://markstengler.com/intravenous-therapy/intravenous-vitamin-c/, https://riordanclinic.org/research-study/vitamin-c-research-ivc-protocol/, found integrative medicine centers near me, consulted on a list of supplements I've put together when my mother had her three consecutive breast, lymphoma, pancreatic cancers over 18 years, and came up with my current protocol. I'm 61. My mother got her BC in the same age, came cancer free (no rads, she took tamoxifen for only a year or so), then she got lymphoma with rupture of intestine at 73, was given three weeks to live, had reduced chemo + I put her on juicing, diet and supplements -- she lived 7 years cancer free, got pancreatic at 80 -- lasted over a year vs given 3 months on juices and supplements.

My goto integrative MD, head of the Osher center, also suggested Lise Alshuler https://www.drlise.net/ books and treatment. I did not get an appointment with her yet (she books months ahead), but got the books, and they're very helpful, even that I already knew and implementing most of it.

I started high doze vit C infusions three weeks ago. It starts slowly once they wait for tolerance test to come back. Then, if OK, they jump dozes, with a goal to bring blood C level to 375-400. I do IVs 2x week.

Diet. Only organic. Plants mostly, NOTHING processed, no red meat ever (some chicken, fish and eggs), no baking goods whatsoever, no sugar, only mineral and celtic salts. Juicing, lots of carrot juice -- ideally 3-5 lb a day if possible, mix of carrot, beets and apples, celery. Ideally, should also do leafy greens, but I'm working a lot, and don't have time for masticating juicer. Watching weight like a hawk, still about 10lb over goal. And also, eliminated ALL chemicals from my household: dishwasher, cleaning products, shampoo etc -- organic only, what we breathe is as important as what we eat.

I start every day with a large cap of clean water with a teaspoon of lemon and apple vinegar each, and half a teaspoon of backing soda. (I take backing soda later in a day again at least once.) Then in 20-30 min I drink my coffee, but water and supplements go first on empty stomach. Here is a list of supplements I'm taking.

First thing in a morning:

Inositol -- 3 caps (repeat with 2x2 later in a day)

Chaga and Reishi mushrooms -- 2 caps (repeat with 2x1 at night)

Vit D -- 5000x2 gels (repeat with 2x1 later in a day -- my integrative med said vit D level in cancer people should be around 75, I had 51, so I increased)

Garlic -- 2 gels

Selenium -- 2 caps

Later in a day:

Artemisin -- 1

Thyroid Support Supplement with Iodine - Metabolism, Energy and Focus Formula - Vegetarian & Non-GMO - Vitamin B12 Complex, Zinc, Selenium, Ashwagandh -- (this thing factually CURED my skyrocketed Hashimoto two years ago. My integrative med said it's good for cancer, too).

Ashvagandah -- 2 caps

Licorice -- 2 caps

C, B6, B12 -- 1 cap each

Turmeric -- 2 caps 2 x day

E, Omega fish oil -- 1 cap each, discontinue 10 days prior/post surgery, blood thinners.

Melatonin -- 20 mg before going to bed (Osher MD said, excellent studies for BC).

Teas:

Chaga, dandelion, pomegranate, green, etc.

I wish I could force myself to exercise more, lazy bun ). Tai chi is on my list.

Oh yes, and I forgot cleansing. Essential to take care that no toxins accumulated in intestines at any time. I use colon detox dr Tobias brand, and do water cleanse at least once a week.

One more thing -- CBT. All my integrative docs say CBT is beneficial with BC. I'm not taking it yet, applied for a state card, waiting forever )

Now, I still do need surgery, but I can testify in court that this thing palpably and visually shrank. I also had two hard lymph nodes on the side of the breast three weeks ago, they are no longer. My understanding of BC and cancer in general -- it is not a local problem with cancer cells growing in our breasts, it's our immune system screwed up for whatever reason and not doing its job. So we need to find that reason and address it. Just like with Hashimoto, the problem is not in my thyroid, or in my breast, the problem is with my immune system = my entire self, body-mind-spirit.

KBeee

Be sure not to take tumeric in the days before surgery or your bleeding risk will increase.

new2bc

ed111,

Thanks for sharing your daily supplements. I also would advise not to take garlic supplements before surgery since it thins the blood.

ed111

KBeee thank you! I asked my surgeon specifically, she said turmeric is OK, E and fish oil are not. also running it via integration md, so far so good )

ed111

My second MRI within a month shows elongation 3-4 cm, instead of initial 8.6, and core tumor somewhat shrank, too.

High dozes Vit C infusions 3xweek.

ed111

My second MRI within a month shows elongation 3-4 cm vs initial 8.6 cm, and core tumor somewhat shrank, too.

High dozes Vit C infusions 3xweek.

ed111

Considering tamoxifen for 2 months to see if there are further shrinking/changes. Surgeon says current changes are inconclusive, but OK with estrogen suppressing for a couple of months which, hopefully, will make surgery less. Interesting how surgery delay may change dynamics in a positive way.