To scan or not to scan

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solfeo
solfeo Member Posts: 838
edited April 2016 in Not Diagnosed With a Recurrence or Metastases but Concerned

I have a dilemma and I'm not feeling trust in my doctors. Sorry it's so long but the dilemma is in the details.

In January I was feeling a hard lump on my chest wall against my sternum that was causing some anxiety. It felt tender and inflamed, which extended up the sternum to my collar bone, and sometimes up my neck. My sternum and collar bone are also thicker and protrude more on that side. This was all on the cancer side. Mostly I thought it was probably related to the surgery, but sometimes would let my mind go there and panic would set in. I decided better safe than sorry and made an appointment with my BS.

Her reaction shocked me. She decided it wasn't cancer before she even touched it and said so. Then the physical exam was cursory at best, after which she declared that it definitely wasn't cancer. That made me cry, people, and I'm not a crier. That is the first time I cried since my diagnosis. It upset me because my cancer was missed for 5 years because none of the doctors I saw would take my complaints of itching seriously and kept telling me itching is not a sign of cancer when nothing showed up on mammograms. Well it was. For five long years, and I had a huge tumor to prove it.

As soon as she saw tears she smelled blood. She scolded me, "What do you want me to do, cut into you?" No, I just wanted my concerns taken seriously. She then went on to say I had a zero percent chance of recurrence within 6 months of surgery, when I know no one's risk, under any circumstances, is zero percent. Then she said I only have a 1-2% chance of recurrence in 10 years. Well those percentages didn't match anything else I had been told - Oncotype gives me a 9% chance, and she got a copy of that report. Then she told me to stop examining myself and just let her check me at my regular exams. I have totally lost trust in her at this point.

Then I started having increasing back pain, which is not unusual in itself because it waxes and wanes and always has. I have had this pain for many years before the diagnosis, and my scans were clear at the time. They said I had arthritis and degenerative changes. Came here looking for reassurance and read reports of people who ended up with bone mets after a similar initial benign diagnosis. That scared me. The pain was also radiating from my back to my chest, which was new.

Saw my MO a couple of weeks ago for a fresh opinion, without mentioning anything the surgeon said or did. She wasn't overly concerned but ordered an ultrasound just in case (they said fat necrosis and cysts, but they have been wrong before!). She is retiring soon, and she asked me if I "wanted" scans before she leaves. She said I didn't have to have them right away, but sometime before July. It came across as more of a tying up loose ends to ease my mind kind of thing, rather than that she thought I really needed them. Previously she has always said no scans without symptoms. I was having the pain but I have always had it. I said I would have the scans, but with reservations because I don't want the radiation exposure unnecessarily.

In the meantime, the back pain has resolved almost completely and I'm no longer feeling any pain in my chest at all. There was a rational explanation for the increase to begin with - I had stopped exercising for 3 weeks, and lack of exercise always make the pain worse. Anyway, it's almost gone since I resumed exercise - at the lower end of "normal" for me, and the chest pain has disappeared. I feel like I no longer have anything to be concerned about.

My scans are scheduled for the end of April, which is only 6 months from my BMX, and I don't want to have them as a routine matter without symptoms. If the pain worsens by that time, then OK, but otherwise I don't want the radiation exposure. The effect is cumulative and I'd rather "save up" for when I might really need them. I'm always going to have this back pain. I can't be having scans every 6 months. But then I worry that if I do have mets, and I turn down these scans, that I might be worsening my situation. I don't know what is the right thing to do. My gut says no but there is this nagging doubt.

What would you do?

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited March 2016

    Hi, Solfeo - I'm sorry you're going through this. I don't have a lot of insight to offer but you might want to just allow yourself not to deal with this for a little while. Maybe allow yourself to just not worry about whether to have the scans (and what type of scans are we talking about?) for a week and see whether you come to a natural sense of the best thing to do. Sometimes taking the pressure off really helps me and perhaps it would you, too. Good luck.

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  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited March 2016

    I understand how you feel, and I'm sorry you were so rudely dismissed when you saw your surgeon! I have pain from my connective tissue disease, as well as swollen lymph nodes, and they worry me sometimes, too. It's not fun. If I were in your shoes I would wait a couple of weeks and see what happens with the pain. If it doesn't come back, I would cancel the scans. If it does come back, I would go ahead with them.

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  • solfeo
    solfeo Member Posts: 838
    edited March 2016

    Hi Hopeful and SummerAngel-

    She ordered CT of chest/abdomen/pelvis without contrast; and whole body bone scan. Looking at the dang orders I can see she wasn't listening to me either because she put down lower lumbar pain as the reason. My pain has always been in the thoracic region, and what I was concerned about was the onset of new chest pain, not necessarily the ongoing back pain.

    I mentioned she is retiring and I had the feeling that day that she was already out of there mentally. She kept getting the facts of my case wrong, and made it sound like I should have had radiation, when that was not what I was told after surgery. Gee thanks, because it's too late now! What I should probably do is find myself a new oncologist, since I have to anyway, and get a 2nd opinion about the scans. I would like to put it out of my mind, but this need to find a new MO is one thing that has been keeping it at the forefront. The fools I have are the cream of the crop where I live, and as hard as it was to find them I don't even want to know what I will be stuck with.


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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited March 2016

    Good luck with your search for a new (and better) MO, Solfeo. It's really tough when the options are so limited.

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited March 2016

    Hi, Solfeo. Darn. It would be so nice just to feel done with this, right? I can see how it's hard to know what to do, especially if you have been dismissed before. If you get an oncologist you trust, you will be able to turn much of the worry and decision-making over to him/her and not be so stressed trying to do the job yourself. Not that you will be worry-free, but you should be able to get recommendations from an oncologist whose opinion you value because he/she has the experience, knowledge, and caring approach to allow you to trust. And this person should be willing to take into account your own intuition and knowledge of your body. Also, if you can get to a major cancer center, all the other people like the radiologists will have the right experience, too. Can you just decide to go to UCSF once or twice a year? For peace of mind?

    Other thoughts in no particular order: I don't like that surgeon, either! It may be that the statistics were 1-2% per year, adding up to 9% at ten years. It sounds like the MO is taking your worry into account. A bone scan is not a lot of radiation, so why not at least do a baseline one?

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  • solfeo
    solfeo Member Posts: 838
    edited March 2016

    Hi SP - You're so right. If I'm honest, the fear weighs on both sides of the issue. Fear of undiscovered mets. Fear of not being "done with this." I don't want to deal with cancer anymore but I realize there is some value in getting to it earlier rather than later if it has spread. Otherwise I could put off any scanning forever. Afraid to do it, afraid not to. I did have a baseline bone scan in August. I was so sure my back pain was going to turn out to be mets then, and so relieved when they said arthritis. No one was ever happier with a dx of arthritis than I was! I guess it's not the usual thing that happens, but to read here that some people did in fact have mets when they were originally diagnosed with arthritis just adds to the fear.

    I have been thinking again about going to UCSF. I'm afraid to find out that everything I've done so far was wrong, too. Gonna have to face up to it all sometime soon.

    Now I'm on my way out to a new doctor (not cancer-related), who better be nice to me or he's going to be on the receiving end of all the frustration that has been building up in me the last few months!

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  • GrammyR
    GrammyR Member Posts: 702
    edited March 2016

    Solfeo - Since your symptoms have gone I would hold of on all those scans- as you mention accumulation of radiation can have problems. She likely had to write abdomin pain so insurance would not deny it. I have a paralyzed arm now which may have been caused by radiation. Of course my MO will not say this but Drs cover for each other. No one told me of this potential side effect beforehand -lretty rare. Try not to worry too much I know its easier said than done.



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  • Artista928
    Artista928 Member Posts: 2,753
    edited March 2016

    I wouldn't even do the scans she ordered if the symptoms come back before the scan date. Both docs are no good. I'd just work on finding a good new MO you like and trust and who listens to you in case you need to go the scan way, and let this new MO write the orders for the scan if you need it. Good luck.

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  • solfeo
    solfeo Member Posts: 838
    edited March 2016

    Thanks for the input GrammyR and Artista. I agree, I should just cut ties with the old MO now and make the decision with the help of the new MO. She also left me waiting 2 hours for that last appointment, which ironically made my back more sore sitting in the waiting room chair! It does put more pressure on me to find a replacement quickly, but oh well, I'll get it over with faster. The surgeon I'm stuck with for reasons I won't bore you with. She has never been that way before so hopefully she was just having a bad day. I won't feel like reporting future problems to her myself, but if my MO refers me she won't be able to dismiss it.

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  • Lou10
    Lou10 Member Posts: 332
    edited April 2016
    I've been there numerous times (feels like it will never end). If I thought I might want the scans, I would not cancel them. Oncologists have such different views about scans. My cancer was also missed for years, so I don't have a lot of faith in the system. I'd wait until the cancellation window was approaching and then see how I felt. I too worry about radiation (particularly having had rads) but I weigh that risk (and how much I'll worry if I don't have the scan). As ShetlandPony mentioned, bone scans are not high on radiation. CTs are, but I've never refused to have one when recommended. That's me though. It's such a personal thing. I'd rather know, and the feeling of relief when the findings aren't suspicious is sweet. The scanxiety is hell though. Best of luck.
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  • solfeo
    solfeo Member Posts: 838
    edited April 2016

    Hi Lou. If I thought she was really using her best medical judgment and wanted me to do it, I don't think I ever would have questioned it. Things were so strange at that appointment and it was like she was handing out farewell scans to celebrate her retirement. I'm glad she gave me the ultrasound for the lump, but when that came back clean it would have been more like her to say let's give the pain a little more time to resolve on its own before sending me for scans, with my history of pain that comes and goes. I'm not sure how to articulate this in a way that will make sense to anyone else, but it's like once I knew the scans were ordered I felt pressured into having them anyway after the pain went away. Not because I think they are warranted, but out of guilt for future regrets I could have for missing an opportunity to find something that there is no medical reason to suspect is there. If that appointment had taken place now instead of two weeks ago she never would have mentioned scans, and none of this would be happening. I don't believe in supernatural signs, but since this diagnosis I find myself fearful of missing one. BC has been a real mind @#$%.

    Since I have a month to wait for the appointment I will take the advice I have received here to decide what to do when I get there. In the meantime I'll be looking for a new oncologist. Thanks everyone.


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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2016

    Solfeo, I remember you were one of the first to comment when I came here for support. You might know that I got a second opinion after I had surgery to make sure I was on the right track as far as treatment options and scans. My oncologist didn't want me to do PET scan or Bone scan, because she said if there are no symptoms, then there will be nothing to see on the scans. She mentioned that she usually orders scans when the tumor is large (4-5 cm and larger) or if there is visible lymph involvement. And in your case, not having lymph node involvement and grade 1 are all very good things. Personally I am terrified of anything MRI or CT scan related. I have horrible reactions to the contrast and I am claustrophobic. I am supposed to have a yearly breast MRI (which actually can see a part of the liver) and that's only if the mammogram and ultrasound are not clear enough. Wishing you the best in your upcoming surgery!

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  • solfeo
    solfeo Member Posts: 838
    edited April 2016

    Thanks LiL! I don't how anyone gets through this without BCO.

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited April 2016

    I don't think they will tell you at UCSF that what you have done is wrong, solfeo. I think they will be interested in where you are now and what is the best next step right now.

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  • amsk
    amsk Member Posts: 108
    edited April 2016

    Hello solfeo and everyone. I was active on this board in late 2011 and early 2012 - had Stage 2 invasive cancer - estrogen receptor and progesterone receptor positive (I think - have kind of put it all out of my mind). Had a double mastectomy by choice even though tumor was in right breast. Started on hormonal therapy but hated it - all of them made me feel bad. So after a few months I stopped taking any.

    Yesterday, for no reason at all, my right hip and top of my leg started to ache. I have sustained no injury and never felt this pain before. It ached all night. Hurts to sit or cross my legs. I emailed my oncologist to request a bone scan, CT scan and blood work and whatever other tests she might feel are appropriate. I want to rule out bone mets. I cannot see a reason for NOT having scans. Even if you don't like your drs solfeo (for which I do not blame you from your description of your interactions with them) - the scans are important to giving you information. I am wondering if you had them? I agree that the scans are not pleasant but IMO - scans are the least of our worries!

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  • AnimalCrackers
    AnimalCrackers Member Posts: 701
    edited April 2016

    Hello Solfeo,

    To scan or not to scan, that is the question...

    It is all such a personal journey and no decisions are easy or obvious. Just thought I'd weigh in with my experience. Another perspective to consider.

    Personally, I would get the scans. I have bone mets but I was asymptomatic at the time they were found (just a week after my BC diagnosis). I had no pain that could be directly linked to any mets and my blood work was great. So pain isn't always present and symptoms are often easily attributed to other conditions. The only reason my bone mets were discovered is because a radiologist saw an abnormality on my sternum on my MRI results. The MRI was not ordered to check for bone mets. It was simply to check my other breast for cancer. Until the MRI I was going to have chemo, rads and surgery, and be a Breast Cancer Survivor... or so we all thought. After the MRI I had a bone scan, CT scans (pelvis, abdomen, chest), a bone biopsy and confirmation of Stage IV cancer (fortunately bone mets only - spine, ribs, sternum, hips). Had I not had that MRI the bone mets would have been missed and continued to grow and possibly spread elsewhere until there was some pain or symptom to warrant a scan as your doctors' protocol suggests. IMHO that would be too late. For me, it is better to know sooner and start the long term fight toward progression free survival then to find out later when progression is more advanced, treatment is less effective, and quality of life is compromised, or worse. I hope that doesn't sound too harsh. There are so many other things I'd like to say but I'd probably sound like I'm rambling.

    In the end, you will do what is right and best for you. That's what we all must do.

    Good luck!

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  • solfeo
    solfeo Member Posts: 838
    edited April 2016

    There was other stuff that went on in that MO appointment that was disturbing to me, to the point that I do not want to see that doctor again, so I did cancel the scans and the follow-up appointment. She asked me if my naturopath told me I could stop taking the tamoxifen, for example, with a big smile on her face. I found myself debating with the woman on why I wanted and needed to take it. I love my naturopath but I really don't want an MO who doesn't believe in her own treatments, and it scares me that I may not be the only one she's having these discussions with. I suggested to someone else that she may be retiring due to dementia!

    I see the surgeon again on May 5th and I'm going to get a referral to a new MO at that time. I'm not against having the scans if I need them, but I don't want to do anything else the old MO recommended without discussing it with the new MO, and if there is a problem I wouldn't want my treatment recommendations to come from the old MO.

    I'm also trying to figure out how to get to UCSF, right after taxes wiped us out. I live in a place where truly good medical care is simply not available, and I'm going to take Shetland Pony's advice to check in with UCSF a couple times per year to make sure my local doctors are not missing something.

    Appreciate all the input I have received here. Thanks everyone.

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