How were you monitored for recurrence?

BoatinGirl

Thanks for all the great info. I am definitely going to change MO's. Probably need to wait 4 mos or so from an insurance perspective though.

Windingshores - boy did you hit the nail on the head! I am certain I am going to develop arthritis as it is prevalent in my family and am in my fifties. So..it is tricky knowing if feeling a little more sore in the morning is that or what??

Sigh.

momaton

great thread!

I too was dx with an ultrasound..had that first..then mammo which showed nothing, MRI lit up like a Christmas tree, then a biopsy which said some atypical cells. Sheesh. Turned out ,after double mastectomy I had 6 invasive tumors.

I have MRI's every 6 months. Mostly because y dx was so strange in the first place.

Now I am having surgery on the 21st of December inorder to have a papilloma in my nipple removed but now we have found a lump in the areola (yes I had nipple sparing). Surgeon has already suggested radiation...so that is a red flag for me. Its baaaaaaack. hopefully not but?????

At any rate, my advice is to get the scans...insist on an ultrasound. I don't have insurance so we pay cash for everything. My last ultrasound was $75 and my MRI's are $300. It's doable and will save your life.

I have an excellent breast cancer surgeon my pcp , pa not so much. Go with your gut feeling about your body.

Thanks for being here all,

E

momaton

well, after surgery,

the path shows cancer...again...yay

See the doc on Monday...looking at rads...whoo hoo

peace all

Eve

KBeee

momaton, Sorry to hear that. I hope you can just do rads. Keep us posted on how things are going.

BethL

momaton- so sorry. I am going through treatment for a recurrence. Stinks. I had bmx 4 weeks ago. Couldn't decide if I should do another lump and rads or mx. Ended up choosing bmx and they found that I had dcis in the nipple, pagets, which wasn't expected. So good ridden nipples. I hate cancer.

Blessings2011

Funny - I've been thinking about this for weeks. Originally dx'd in September 2011. Had just gotten a cheery little "Congratulations - you don't have breast cancer!" postcard seven months prior.

I'd had seriously dense, fibrocystic breasts for years, but my PCP at the time (since fired) absolutely refused any diagnostic procedures other than screening mammogram until my left nipple began bleeding spontaneously. THEN he got the ball rolling.

The Radiologist found where my multifocal tumors had started changing the tissue at least two years prior. She went on to exhaust all possible tests to rule out cancer, but it was multifocal IDC, with the LARGEST tumor being the size of a grain of rice, deep inside the breast. There was no way I would ever have found it myself.

Long story short: Bilateral MX in December 2011, with recon. No chemo, no radiation. Tried Anastrazole for a year with disastrous results, then Femara for another six months with the same outcome. During the first year I was seen for lab work and a physical exam by the MO every 3 months. Then it was every six months, and when I quit the AIs, the MO told me I could just go see my OB/GYN for a "breast" exam. There was no need to see either my Breast Surgeon, unless I had a new lump, or my PS unless I had an issue with the implants.

I think it's been over a year since I've been seen. I would like to have a proper exam, what with this being my five-year-out anniversary, but I have no idea who I can see. Calling the Nurse Navigator tomorrow. Grateful for early stage cancer, but I want to be smart.

hsant

I was diagnosed with DCIS, with a possible borderline micro invasion last May. I opted for BMX (no recon). Patholology found a 1.5 cm invasive tumor (IDC). Had to have a re-excision to clear the margins. My onc in Los Angeles prescribed getting my Tumor markers checked every 3 months (ca 15-3). The onc I use when I'm in Cleveland suggested ca 27, 29, so I get both checked every 3 months. I'm scheduled for my third time this Wednesday. I honestly don't understand how ct, pet, ultra sound wouldn't be ordered to check for recurrence. I'm going to ask the onc. about this at my upcoming appointment

Artista928

I'm thinking insurance doesn't cover for just checking without symptoms as well as these scans are not problem free. You are putting xrays into your body and it does harm. So I think that's why they don't just do CT, PET, MRI unless you go in saying you have ongoing symptoms.

barcelonagirl

Hi, I am three years out from my diagnosis, and after an Oncotype score of 21, ended up having chemo, as the MammaPrint test said I was high risk. So glad I did, but will be thankful when I hit that 5 year and subsequent 10 year mark. Have been reading up on Oncotype, and see that they are shifting the low risk range from 1-17 to 1-10. It's scary to think I originally fell in the "low intermediate" range, and now would be in the middle with my 21. Does anyone else find the scores confusing, and has anyone with a mid-range oncotype opted out of chemo only to have a recurrence?

Artista928

My MO doesn't do oncotype or tumor markers. She says they aren't reliable. She's a PhD in onc as well and has participated in research. So I have no clue what mine is. I just trust her enough that she knows her stuff and is treating me the best way possible.

hsant

Aristar, that makes sense. My insurance will cover those scans, but you're correct. Some of those scans can do more harm than good. My oncotype score was 16, and even if it were in the mid range level, my onc said he wouldn't have recommended chemo.

Anonymous

Artista, many on here reported the same about tumor markers, that they are unreliable. However the Oncotype test seems to be widely accepted to tell whether chemo is indicated and what your risks are based on taking an AI. My Onco score was 11 so no chemo but an AI for 10 years. Barcelonagirl, if they are changing the range, I would be just over the 'low' range. Wonder what my MO would have suggested had that been the case 7 years ago. As usual, all a crapshoot!

Molly50

patoo, my oncotype is 13 and I had mine when the range changed so I am low mid range. I still was told chemo would be of no benefit. That was with 2 positive nodes and extensive LVI. I sure hope that test was right.

Anonymous

Molly, I hear ya!

Artista928

I was told if I didn't do chemo, it would come back down the road by 2 docs. I told my MO I want the book thrown at it so she's treating me a little more harsher with chemo than she does with some III. The size of the tumor and having 1 lymph node involved drove this I think. I'll be on hormone pill too at the end, not sure which one.

Cubbie2015

My understanding is that the Oncotype ranges have not changed, but the Tailorx study chose to define a different set of ranges for their study. So low in the Tailorx study is only 1-10, but Genomic (and NCCN when I read the guidelines a month ago) considers low to be 1-17. Since Tailorx is trying to determine the precise point where chemotherapy is and isn't of benefit to those in the intermediate range, so they used lowered ranges for the study.

Anonymous

Thanks Cubbke.

Artista928

Maybe my first onc did an ocotype score? Can anyone tell me what these test results mean? Thanks

CEA, CARCINOEMBRYONIC ANTIGEN - Details

Carcinoembryonic Antigen (CEA) 1.6 ng/mL 0.0 - 3.0 ng/mL

CA27.29 - Details

Cancer Antigen 27.29 16.9 u/mL <38 u/mL

CA 15 3 - Details

Cancer Antigen 15-3 11.9 u/mL 0.0 - 31.0 u/mL

7of9

Recurrence after 3 years of big nothing check ups. All they did was ask if I had headaches, feel for lumps and press on my liver. Looking back it was BS. At the time I thought this is easy but in the back of my mind I would think "we are really going to just wait and see if and when it shows up somewhere else"? Diligent self exam I had to go AROUND my onc and get his nurse to set up an ultrasound That I cancelled 2x (had a bad feeling despite no lump, just puffiness under armpit). 1 x was for sick kid, other time they were running late and I was scared and bolted. Well, it's back alright. In Axillary nodes and one tumor about 1.3 cm next to a node. So far clean bone scan and lower abdomen CT. ER + so skipped the onc AGAIN and went strait to surgeon and gyn surgeon. They are cleaning out the nodes, armpit and bye bye ovaries (which I requested they take out before despite not BRCA genes). OVARIES KEEP MAKING ESTROGEN EVEN WHEN YOU STOP HAVING PERIODS. And I thought no or few and far between meant I was in the clear with my Tamoxifin. hahahaha

enjoyevrymoment

Moni, 7-9 , Momaton, and others fighting the beast: kick butt and I am praying you do well. 7-9 have been following your thread. I think although cancer research has gotten better than a zillion years ago, it is my hope that there will be better care and understanding to prevent recurrence or breast cancer at all taking place. I always wondered that when they are doing the biopsy don't some of those cancer cells get in the bloodstream? There is still so much unknown but 1. I know I am alive and doing what I was put on earth to do and I have today. 2. We are a strong band of sisters (and an occasional brother and I have learned so much on these boards!

My oncotype was 12 and I did not get chemo, was told it would not be helpful. I have learned a great deal after my initial diagnosis almost two years ago. BMX and lumpectomy with radiation have similar outcomes but there are so many variables, we are all so different I look at it this way: We do the best we can with the knowledge we have.

I am inspired to get this weight gain under control from reading more about cancer. That being said I know people who practically ate tree bark, or were vegan, or were marathoners, were normal weight....and got cancer.... sigh.

My oncologist does CEA and a 15-3 as well as CBC every six months. Annual cholesterol. He does an exam too. I had MRI last year, but having had a DIEP I was told Mammos are out of the question. I also still see a gyn each year for an exam. I see breast surgeon now annually (plastic). I never did see the general surgeon again, she helped with the DIEP surgery but I was told that follow up was optional. I see PCP every six months unless something comes up.

I am taking Femara. I get hot flashes and aches and hand joint issues not to mention a bunch of other mild things, hair thinning, some personality change I think, but am sticking with it.

CEA is elevated with colon cancer "and other cancers" (see link)

CA 15-3 and 27.9 are breast cancer markers

Here is a link to what I believe to be a reliable source defining the markers.

http://www.cancer.gov/about-cancer/diagnosis-stagi...

Cjs47

Hi all,

My onc also told me he didn't do routine scans because the outcome would be the same caught early or late. I had a double mastectomy and 22 lymph nodes removed in June and was told all clear. Inhad 61/2 weeks radiation. I'm currently still on herceptin and tamoxifen. I complained of upper back pain in September that has not gone away. I had to complain to him every time I saw him. He finally ordered a bone scan at end of December "with an attitude". The scan showed abnormal uptake in the t9 vertebrae suspicious for metastates so now I'm having a mri on Wednesday!!!! I'm so mad that I had to fight for this scan and now it's showing something scary!!!

We all need to be proactive in our care because the doctors sure aren't

Melclarity

Hi Everyone!

I just found this thread and wanted to say, Ive been getting yearly checks at Breast Clinic for 9 years, 4yrs ago I was diagnosed with DCIS, had a lumpectomy wide margins, radiation and tamoxifen for 4yrs!!! In June 2015 my routine yearly checkup..the unthinkable happened, I had a recurrence, my BS in shock! inspite of rads and tamoxifen it returned in the same spot, Grade 3 aggressive. I had another lumpectomy really wide margins, clear lymph nodes, chemo and get put on a new hormone pill next week as Chemo through me into menopause.

Ive been vigilante and done all the right things and as my BS said, I was one of the unlucky ones with a recurrence. I will now be monitored 6 monthly for a while and see how things go. Whilst I am cancer free and recovering from Chemo..my Onc wants me to consider a Mx eventhough my BS said his Lx was equivalent at the time.

nandia

hi, I am living proof that more needs to be done to avoid a recurrence of metastatic stage 4!! I went to all of my appointments and never had blood work or scans. Dx stage 3 in July 2012 and now recently stage 4 metastatic breast cancer as of April 2017. I had a discomfort on the top of my shoulders thinking it was stress. Now I'm on chemo every 3 weeks to stop it from spreading. There's no cure at stage 4. I believe more needs to be done to hopefully catch cancer before it gets to stage 4. The explanation from my doctors that it's not in the guidelines to scan or check for markers is not enough.

Traveltext

Sorry about the recurrence nandia,what treatment did you have originally? I agree that follow-up protocol is pretty random.

Lumpie

I found my lump myself. The radiologist looked back and said there was no evidence on prior mammograms, the most recent of which was about 8 months prior to finding the lump. There are SO many things that make me NOT confident about diagnostics: The tumor size was WAY underestimated based on the Dx mammogram: turned out to be @ 4 cm vs 1.5. This caused me to miss out on the neoadjuvant treatment I should/would have gotten if the size had been properly Dx'ed. (I will always wonder if this made a difference in my "outcome" or if I could have done something to goad them into doing further testing.) No Oncotype, etc., was done because my tumor was HER2+. No tumor markers were done because my MO says they are not reliable. I think that this is a common approach. Post Tx follow up was clinical visits every 3-6 months, one mammograms at 6 months and then annually, routine CBC, CMP, etc., every 6 months.

I had every symptom of metastasis in the book at initial Dx but the MO and BS declined to do further scans because it is "not protocol" and they don't go on "fishing expeditions" looking for cancer. Even my second opinion doc agreed with this. Plus, my docs insist that very early detection of metastasis does not improve outcomes (I questions that). I understand that nothing they did was unreasonable given "standards of care" but it is really frustrating.... if 30% of breast cancer survivors end up with metastasis, and some/many of those happen in the short term, it seems to me obvious that a fair amount of de novo metastatic patients are probably being missed at initial Dx. Maybe this is an area where we just need more research. Fire up the advocacy machine! wonder if anyone else observed this/feel like this is an issue... that mets were probably missed or ignored at initial Dx? Thx.

Rrobin0200

I am being monitored every 6 mos for 5 years by clinical (palpable) exams, however, I am demanding an us every time i go in. Just for peace of mind

bevin

Hey Lumpie

I'd go for even a 3rd opinion. If your doctors continue to refuse to check out symptoms, I'd hire another doctor. They work for you remember. I did get CAT scans as part of pre tx and post tx follow up, as well as bone scan , and tumor markers and blood levels of normal labs. My Onco believes it al tells a story and while one thing alone may not be adequate together they put a picture together.  I'm glad he is aggressive that way. Now that I'm 7 years out I see MO 1x per year and get blood levels and tumor markers, MRI of breasts annually and mammo annually.  I hope you find a doctor who meets the type of care you'd like to receive. If yours does not rule out issues when you present them, then I'd say they're not treating you well and Id find someone who will follow up on your symptoms. Good luck. I hope all turns out okay.

Lumpie

Thanks for the replies and thoughts. I have begun to consider getting additional opinions. I think that one challenge more an more of us are going to face is that our health plans have relatively small, closed networks of physicians and if you go outside of those, the coverage is very expensive or you have no coverage. Oddly enough, based on some abnormal labs, I have recently gotten more testing ordered courtesy of a urologist. This journey sure takes some weird twists & turns!

Kattis894

Interesting thread. I am just finishing my Herceptin shoots and are now sort of "thrown into" - you are fine, no cancer can be found, check yourself every 2 weeks and goodbye stage. Call us if you feel anything strange...Well my hole body aces, I am stiff etc, my scaring area seems sore from radiation long after etc...that is normal and can take years to pass. Anyway my point is how on earth am I going to"feel" if the cancer is back on my own. I got a sore throat the other day, my thoughts goes to cancer, etc...It will be a scary time moving forward on my own. I am applying for a new job that is a bit different, more steady with routines but at the same time thinking whats the point if this comes back, should I just enjoy myself for awhile but then getting thrown out of the insurance system...so many thoughts....

Traveltext

Kattis, we all have this worry, and it is only natural. Your treatment appears to have been best practice, so I wouldn't over worry this. As I've posted before, my oncologist says mets symptoms would be persistent AND progressive. If this is the case, then allow two weeks max before a medical appointment to investigate further. Otherwise, take that new job and get on with life.