Why didn’t they do scans on my mom???

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Juleseyes
Juleseyes Member Posts: 20

Hello everyone, I will try to make this as to the point as possible and I know that the only person who can give me the final answer is the doctor but I'm just hoping for perspective.

3 weeks ago - mom has suspicious mammo and is biopsied. They take out a piece of an invasive ductal carcinoma, some calcifications, and a small carcinoma piece in a node all in the same side. She's sent to a surgeon immediately.

3 weeks ago - surgeon reassures us all that she is er pr+ and her2- and this is good. He feels all over her underarm and everywhere, seems very skilled. We asked about Mets and he kind of brushed it off. The one in her lymph is so small he says. He's super confident almost to the point of being cocky but he put us at ease and he has amazing reviews online. She also had all her blood work done around the time of the Mammo and she seems to be in great health in general.

1 week ago - surgery. Mastectomy. She's recovering well. The incidison goes all the way up near her armpit but not quite under it. We have to wait till Jan 8th to meet with the patho which means my Christmas break is nothing but stressful because due to all my research I DONT UNDERSTAND WHY HE DIDNT ORDER MORE TESTS. It's to the point where I want to attempt to call the surgeon or her regular MD and ask but I know they can't give me that info!! What if she has bone or brain Mets floating around, they didn't even bother to check?! I don't even know how many more lymph's they found during surgery either. I'm so confused and lost and just sick with worry from the minute I wake up to the minute I go to bed.

Comments

  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited December 2018
    Most oncologists will not scan for mets in early stage cancers unless there are symptoms as there are studies that say that the timing of mets diagnosis does not affect longevity.
    The best thing you can do for your mom right now is be calm and patient. You will get more information in January and until then try to be there for your mom and quit researching on the internet. Enjoy the holidays and try to forget about the cancer as much as possible. My oldest daughter and I did jigsaw puzzles last Christmas break and it was a nice bonding experience and it keeps your mind focused on something that is not cancer. Right now is the most difficult time until your mom has a treatment plan, but it will get better. Keep us posted.
  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited December 2018

    Yes, most oncologists do not scan for metastases in early stage patients who are very unlikely to have mets. Scans themselves, such as, PET, expose patients to radiation and one certainly wants to limit radiation exposure. Additionally, scans and testing can be very stressful. Why bring on more stress and radiation exposure when the chance of mets is so low?

    I am stage IV and even I have lengthened the time between scans (once a year) because of concerns over radiation exposure. My mo is the one who helped me understand that although scans can be a great diagnostic tool when needed, they are not entirely harmless.

    I know that waiting is very, very difficult, but although you are understandably worried, a week or two won’t make any difference in the long run. Many of us have been in your mom’s shoes. The beginning is difficult and you want everything done right now, but find some good distractions. Take good care of you mom and yourself.

  • gb2115
    gb2115 Member Posts: 1,894
    edited December 2018

    It's not standard of care to check for mets in early stage cancer. I was scanned because of one positive lymph node (sent by my surgeon not by oncology) and then found out it was overkill---wish I hadn't had the extra radiation exposure.

    Sorry about your mom's diagnosis.

  • edwards750
    edwards750 Member Posts: 3,761
    edited December 2018

    I had a micromet in my SN. Showed up on the Path report after my lumpectomy. My BS said it would get me chemo. Not his call. MO ordered the Oncotype test and it came back with a low score. Dodged chemo.

    I was DX IDC, Stage 1b, Grade 1 7 years ago last August. I didn’t have a single scan. Had 33 radiation treatments and 5 years on Tamoxifen.

    I asked my MO why they didn’t check to see if any more lymph nodes were affected and she said no reason. They had to dissect and re-dissect to find the micromet.

    Waiting is brutal. We feel your anxiety. You have confidence in her doctors abilities and that’s important but there is nothing wrong with you asking them questions. You should ask away.

    It’s Christmas so enjoy the holiday with your family. Stay busy as possible. Shouldn’t be hard during the holidays. Try not to worry.

    Keep us posted. Happy holidays!

    Diane

  • JosieO
    JosieO Member Posts: 314
    edited December 2018

    Juleseyes,

    Just adding to the very good comments shared with you.

    I had “normal” mammograms for over 30 years, but late last year had an abnormal one, ultimately diagnosed with Stage II cancer (Stage II due to one cancerous lymph node). Had a jumpectomy, genomic testing which showed no value in chemotherapy, and similar to edwards750 had radiation therapy (which serves to destroy stray cancer cells not in the tumor itself) and am now receiving hormone therapy. Like your mom, I had an outstanding surgeon and oncologist team.

    As I read a lot of literature and I would encounter people, I would frequently be asked/confronted with the same question of why no subsequent scans. I would get fearful, but would ask my doctors.

    As has been shared with you, there is risk in constant scanning that doesn’t yield useful results.

    What you will learn is that the pathology report yields great value in determining treatment, and other tests such as Oncotype can yield even more. Trust that the individual actions: surgery (to remove the primary tumor and provide tissue for testing), radiation (to destroy stray cancer cells) and chemotherapy and or hormone therapy (to ward off against cells being stimulated to grow abnormally) are each forms of treatment. When these come together in a plan, supervised by a medical team, your mom will be receiving the best. I know I did

    I was where your family was a year ago Christmas-with an abnormal mammogram, but waiting for subsequent biopsy, diagnosis, and treatment plan, I cried just about every day-could not get past the fear. This Christmas I have already had surgery, radiation, taking hormone therapy, and my first “clean” mammogram. So know that your mom is on the pathway to good health again.

    We’ve been there, and will be here for you.

  • Juleseyes
    Juleseyes Member Posts: 20
    edited December 2018

    thank you Josie for your kind words, and all the other people as well. I actually made an account with the national comprehensive cancer network (you need an account) and from there you can read the guidelines for all sorts of cancer. For breast cancer, if it is in the early stages as thus determined by the clinical and biopsy portion, then scans aren't recommended as the chance of metastizing is lower than the chance of false alarms, and the treatment would generally go ahead as originally decided anyway. I've had some people on other forums tell me that they NEED to do baseline scans, and to them it seems like malpractice not to..

    Edit: some doctors may still choose to do scans depending on the particular type/aggressiveness or maybe even just their own medical beliefs!

    The NCCN.org is a WEALTH of info. You need to create an account and it's fairly technical but it explains exactly how doctors reach conclusions, what steps they need to take and why they will recommend certain treatments.

    I'm feeling very positive. It's definitely been a sad Christmas but an eye-opening Christmas. Even though my mom will (hopefully) be okay, we all need to live and Love as though tomorrow might not come.

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited December 2018

    Jules,

    Wishing you and your family a happy holiday, despite the the current situation. I think you were smart to visit the NCCN web site, because as you’ve discovered, misinformation abounds. It even happens here on bco from time to time but we have many knowledgeable members who can direct members to reliable sources.

    As to saying that scans need to be done, some people do want everything done, even if there’s no real benefit to it. If their insurance will cover it and the doctor writes the orders, patients who demand scans can and do get them. I believe a few have even paid out of pocket (very expensive) for scans, but as you have learned, scans are not as benign as some think.

    Wishing you the best

  • jessie123
    jessie123 Member Posts: 532
    edited December 2018

    Well - this kind of worries me because my surgeon did order an initial bone scan. I had an incomplete initial diagnosis at a different facility of ILC, but the tumor was just 1.3 cm. The new surgeon ordered an MRI, bone scan, blood work and second biopsy. Is that unusual??? I didn't have any symptoms - just the lump in my breast.

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited December 2018

    Jessie,

    It may depend on YOUR cancer type. You say that you had an incomplete initial diagnosis. Your tumor was 1.3 cm, but what KIND of ILC (ER?PR?HER2?) and WHAT grade (1, 2, or 3)? I had an MRI because my cancer was aggressive --- triple positive, Grade 3. But, if I were Grade 1, ER+/PR+/HER2-, I doubt would would have gotten an MRI. You can't necessarily go by someone else's scan history.

  • jessie123
    jessie123 Member Posts: 532
    edited December 2018

    Elaine -- the first hospital was not able to determine anything but Lobular because the samples were too small. So the only info. the second hospital had was Lobular. After my biopsy at the second hospital they diagnosed Mammary carcinoma - lobular Like -- E/P + and HER2 - Ki-67 low. She didn't tell me the grade. However, she ordered the bone scan and MRI before she had that second biopsy information. This is a teaching hospital so maybe they do things differently. I hope that's the reason.

  • Juleseyes
    Juleseyes Member Posts: 20
    edited December 2018

    Jessie - please don't be worried. Like Elaine said, he could of been suspicious of your particular type, or maybe he is just very Very thorough. Everyone seems to say not to be worried until your surgeon/oncologist is. So if he's not - no reason to worry. (Also I'm not a doctor, I'm trying to do my research but I definitely am suspectible to misinterpreting things! Trust your surgeon/onc only)


    Edit: if it helps, the surgeon kind of explained to me in layman's terms that the size of her tumor and the minimal lymph involvement is what gave her the clinical diagnosis of early stage(aka their best guess before they open her up) and, her tumor is slightly larger than yours. So I'm a wishing you a speedy early-stage diagnosis and a fast recovery

  • JosieO
    JosieO Member Posts: 314
    edited December 2018

    Juleseyes,

    Thanks for the tip on the NCCN website. It sounds like a good source of info, so I am going to get on there and create an account. Helpfulto read knowledgable documentation.

    I thought your last sentence was lovely. We should all live our lives that way.

    Best wishes to you and your mother as she goes forward.

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