Posted on: Jul 24, 2017 05:31PM - edited Jul 24, 2017 05:40PM by mellee
I'm about 9 months out from a double mastectomy and lymph node dissection for Stage 2b breast cancer. I'm currently seeing my oncologist every 3 months. She does blood work to check my calcium levels (which can be abnormal if you get bone mets), but doesn't think that testing for tumor markers is reliable. Wondering what others are doing to screen. Is there anything I should be asking for?
Also, there's nothing being done to screen for local recurrence (aside from breast exams), even though that is my biggest risk in the near-term. My oncologist doesn't recommend mammograms (even though I had nipple-sparing MX so there is a small amount of tissue left), and I don't think insurance will cover MRI screening unless I have problematic symptoms. So my question is: in the event of a local recurrence, how are we supposed to catch it early? I asked about a recurrence to the chest wall, and the possibility that this could develop under my implants, and my oncologist said that eventually, such a recurrence would get big enough that you would be able to tell it was there even under the implant. Obviously, that means you wouldn't catch it when it was small, so that doesn't seem like a good solution.
Does anyone here get annual MRIs or any other types of scans to check for local recurrence? It just seems like something that would make sense.
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Jul 24, 2017 05:49PM letsgogolf wrote:
I haven't had any scans yet and I finished radiation in late May. I am not due for another mammogram until late November. My doctor doesn't order most of these tests unless patients have symptoms.
Your stats look very similar to mine. I believe your chance of recurrence must be very small. My understanding is that grade 1, luminal A tumors with very high ER and PR most likely will never come back. Your Ki67 is low which is also good I understand your concern, however. It is very hard not to fear the worst. I wonder how our lazy, grade 1 tumors managed to make it into our nodes. Strange disease.
Jul 24, 2017 06:14PM mellee wrote:
I hear you on the lazy tumor! It was a surprise to my surgeon when the path on 2 of my nodes came back positive (1 macro, 1 micro). Even in surgery the nodes looked good. I guess my supposedly slow-moving tumor had wanderlust.
It does make me nervous about metastases, despite the otherwise positive indicators. You just never know.
Jul 24, 2017 06:23PM Sjacobs146 wrote:
Unless you are symptomatic, they don't really do anything other than physical exams to monitor for recurrance. I had lx, so I still have mammograms annually. Definitely see the doc if you develop pain anywhere that doesn't go away
Jul 24, 2017 06:41PM - edited Jul 24, 2017 07:31PM by marijen
I was told the same thing as Mellee by my first MO, just wait for the symptoms. What? Then it's too late already. My second MO is more proactive, I got a CT, Petscan, and 3D mammos every six months with my lx. Also a Tumor Marker test - CEA.
Jul 24, 2017 07:10PM letsgogolf wrote:
mellee I have read several studies that indicate the possibility that our biopsies may have caused the micromets. Especially high risk if located in the upper outer quadrant. Don't know about yours but that is where my tumor was. Also possible that because the tumors were slow growing and grade 1 that they had been with us for many years and that may be the reason that a few cells ended up in the first few nodes. I have wondered how some of the grade 3, aggressive tumor owners have no node involvement and my 1 cm lazy, oncotype score 3 tumor ended up in the node. Add to that these 6 cm DCIS tumors that I read about on these boards. Still scratching my head over those when my little spiculated tumor escaped the duct.
Jul 24, 2017 08:32PM mellee wrote:
What a difference different MOs make! Marijen, have you found it difficult to get insurance approval for the CT and PET scans? Are they ordered for straightforward screening, or is the MO citing a different reason in order to get them approved?
I ask because a plastic surgeon told me that if I wanted to get an MRI to screen for recurrence, we could always order it on the pretext of screening for silicone implant rupture (the FDA recommends that patients with silicone implants get MRI's every 3 years, and you can get approval for an MRI at any time if you feel any change in the implant).
Jul 24, 2017 09:07PM Artista928 wrote:
The amount of radiation CT and PET scans produce in you is nothing to sneeze out. That's why most MOs don't do such exams unless you have a symptom which an MRI or ultrasound which are both harmless wouldn't catch.. You also can get cancer from so much radiation.
Jul 24, 2017 09:14PM - edited Jul 24, 2017 09:20PM by marijen
Well it was a sequence of events, I developed DBC - delayed breast cellulitis, and they were all unsure what was going on. The PTs wouldn't touch it because they thought it was cancer. One Dr. Prescribed antibiotics, that didn't get rid of the swelling, peau d'orange, deep redness and pain, so they tried prednisone. At that point I saw my new MO and she ordered the CEA test which has been out of range for a year. So it was justified to give the scans. Plus I had an occult primary never found and an enlarged lymph node in my good armpit. But it doesn't light up. With that I began feeling aches from that area which I will tell her about this week. It's the never ending testathon in my case. The pet scan showed thyroid nodules and lung fibrosis f rom. Radiation. Sorry keyboard is acting up.
I also had an IBC biopsy.
Yes I am very worried about all the radiation. I would prefer MRI so I will ask about that. Just read mammos are not 100%, more like 75 -85%
My experience is doctors will code to justify tests for insurance
Jul 24, 2017 09:49PM exbrnxgrl wrote:
A voice from the stage IV world...
Artista I agree with you and so does my mo, regarding radiation exposure. For a year after my stage IV dx, I had PET's every 3 months. Then we moved to every 6 months. My mo feels, since I am doing well, that she'd like to go to yearly to minimize what she feels will be years of scans and it's radiation exposure. Not sure if I'm ready to go annual. Logically, it makes sense but emotionally I can't be that cut and dried. In my 6 years, I've had a LOT of radiation And I know I don't need any extra.
It is often said that discovering mets early does not change or extend lifespan. You just know about it and receive tx earlier (often with se's that aren't fun). I cannot swear this to be fact as I have no citation but will try to find a source. Sadly, very few with mets live out a normal lifespan, regardless of whether the mets were found early or not.
Jul 25, 2017 10:33AM mellee wrote:
Thanks for the warnings of radiation exposure with PET and CT scans. In my case, my main priority is being vigilant about screening for a local recurrence, so I think my plan is to get an annual MRI—at least for the next few years.
Jul 25, 2017 10:47AM - edited Jul 25, 2017 10:48AM by Rambros
My MO does blood work including tumor marker (CA 27-29) and a physical exam every 6 months. The breast surgeon and rad onc also do physical exams yearly.
Like you, I'm concerned about catching a local recurrence as early as possible since that is theoretically curable.My rad onc has agreed to order annual MRI's for my peace of mind. My insurance carrier covered it in 2016, but my employer switched carriers and my new insurance carrier denied it for 2017. I decided it was worth it to me so I paid out of pocket, $833, and plan to budget for that at least for the next few years.
Jul 25, 2017 02:33PM ksusan wrote:
I get a physical exam, interview, and routine blood work, but no tumor marker test. I had 2 years at every 3 months; now I get 3 years at every 6 months.
Jul 25, 2017 03:47PM Optimist52 wrote:
Artista, you claim that breast MRIs are harmless. Unfortunately this is not the case. I was on a six monthly MRI/mammo-US schedule until my BS told me that the latest research on breast MRIs shows that the contrast dye used (gadolinium) has been shown to be potentially harmful to the brain and kidneys. She has now stopped my MRIs which on the one hand is concerning because they are the best tool for diagnosing ILC (which I have), but on the other this is a real worry in terms of the risks to the brain and kidneys. Here's a link to the latest information on it.
Ultrasound certainly does seem to be harmless and is definitely worth getting as an adjunct to mammogram. I have raised this issue about gadolinium used in breast MRIs previously on this site but it hasn't received much attention. It's particularly an issue for anyone with ILC because of its ability to 'hide' on mammogram and sometimes US.
Jul 25, 2017 04:13PM EastcoastTS wrote:
So far, and I'm new to this, I've gotten fairly extensive bloodwork (including calcium) and physical exam. However, I had some issues so had CT and Bone Scan. All clean. I had the radiation exposure but...what are we to do?
I'm planning to push for tumor markers. And perhaps will ask about a yearly MRI. I'm okay with the cost if it relieves MY mind. I think after a few years, perhaps we settle into the new normal and are not quite as anxious. And I'm not totally anxious.
I'm reading Crazy, Sexy Cancer Tips and she's big on having a team. We hire our team and manage them. I have an integrative MO as well as MO -- but so far -- she's fairly conservative. ;) So my team is MO, Alt MO, Gyno (tamoxifen -- I'm getting yearly trans vaginal ultrasounds) and a functional MD once I get that scheduled. They will run tumor markers if the MO doesn't want to. And an endo. because I have bone issues to address too on top of all this fun!!! (I haven't figured out what a PCP would do for me since MO running so much blood work, though I have one that I don't see often.)
Jul 25, 2017 05:12PM tangandchris wrote:
The approach to surveillance after treatment has been a big hurtle for me to accept. My MO also only does blood work, physical exam and asks how I'm doing. No tumor markers and no scheduled scan unless I have symptoms. I am in a better place with acceptance, but it's still tough.
Jul 27, 2017 08:02PM TriplePositiveP wrote:
ksusan, my MO initially said my follow-up would be every 3 months for 2 yrs, then every 6 months for 3 years, but at my last 3 month appt (my 3rd since I finished chemo/herceptin) he said he said "see you in 6 months". He was in a hurry so I didn't have a chance to ask if that was a mistake or if it's a change in standard of care for followups.
I always ask a list of questions which I had no idea was bothersome until I requested patient notes and saw the recurring note was in the vein "again with the questions" or "page of questions".
so maybe it's a reduced schedule for that reason
Aug 9, 2017 04:46PM Msjackiefan wrote:
It's been over 4 years for me.
So far, I've had 3 of bone densities, as I am post-menopausal and taking aramatose inhibitor-so bones can be weaker. I get a shot every 6 mos. to fight off osteo.
I've also had 2 CTs in 4 years,, ab and chest-all clear; and one bone scan, all clear but for, 'gee those knees and feet have been through it'. Otherwise, just normal labs and physical exam. As I approach 5 years, I am getting another ab/chest CT and bone scan in early 2018. Each case is very individual. One factor can alter your treatment, so be aware you are unique and just follow your best doctor's prognoses. Good luck, and seriously....just live your life. Don't waste time worrying. ok?
Aug 12, 2017 05:53PM Marvavg wrote:
I completely agree. I don't like being told - wait for symptoms- I am including something I posted on a other forum which may be of interest. Don't know your location.
I have recently enrolled in a study for people who had breast cancer and are withinn five years of diagnosis. The study is for high risk people. I don't know all of the requirements- but it is for people who've had neoadjuvant chemo. Two of the factors that would include you are involvement in any lymph nodes or residual tumor when surgery was performed. There are two more and I can't remember what they are. The study is call PENNSURMOUNT and to me is very exciting. They are looking for dormant cells hiding in bone marrow. If you have these cells- it doesn't mean you will definitely have a reoccurrence but there is a greater likelihood. Just as if you don't have them, there is a lesser likelihood. If you DO have the cells, there is another study that is testing medication to eradicate the cells. The study is to include 600 people. So far they have 70. They are now going on a year into it. When I heard of this study I jumped on it! As I've had a bilateral mastectomy, I am very dismayed that there is no surveillance. It's- wait for symptoms- I don want to wait for symptoms! I didn't have any in the first place! It was discovered in a mammogram. I encourage anyone who's had neoadjuvant chemo to look into ito this study. Just google pennsurmount.
Aug 13, 2017 11:59AM pennsygal wrote:
Marvavg - thank you very much for posting the trial information!
Nov 12, 2017 07:59AM A4ggy wrote:
I am in the midst of chemo right now for stage 2A TNBC. I have finished 4 rounds of AC and starting 4 dense dose Taxol. I am planning on a bilateral mastectomy with immediate reconstruction, but I already worry about follow up appts and making sure they can check appropriately. Fear of recurring is real and I wonder how I will move on with life and not be in constant worry mode.
Nov 14, 2017 01:28PM Lorikw wrote:
Hi!I have the same question as you! Do we just have our twice yearly mammo's and just wait and cross our fingers the cancer doesn't spread? I have a mammo and oncologist checkup next month so I am going to ask....I will post the answers I get
Nov 14, 2017 05:30PM gb2115 wrote:
Yes I think you wait and cross your fingers... that's what they are doing with me! I was told call if I have weird symptoms that last for more than 3 weeks. Otherwise mammo yearly, MRI in 6 months--i think that was added because I expressed concern that a close family member was just diagnosed with a stage 4 recurrence after a long long time NED. I'm not sure they would have chosen that otherwise but I am ok with it because the last tumor appeared and grew to 1 cm after a clear mammogram. I feel like more frequent checks is the way to go!!!
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