We are 226,532 members in 82 forums discussing 158,834 topics.

Help with Abbreviations

Topic: No body scans?

Forum: Not Diagnosed With a Recurrence or Metastases but Concerned —

Meet others concerned about developing a recurrence or metastases.

Posted on: Sep 5, 2019 01:30PM - edited Sep 5, 2019 01:34PM by IAmACat

IAmACat wrote:

Hello everyone. I am finishing up chemo, and my doctor says there will be no body scans to check for remaining cancer (I had cancerous nodes left over from surgery before chemo started) or recurrence. No future scans, period, with the reasoning being that scans only pick up medium-size tumors, not tiny little ones sprinkled all over, and that the scans are expensive. (??? Is the doctor paying for it? My insurance is decent.).I asked if I would get one if I had bone pain, for example, and was told yes.

I don't know if I am reading posts wrong...but aren't many of us getting routine scans, say every 6 months? And I am stage 3c, her2+, so I am a prime candidate for follow-up imaging. Is this normal??

I am thinking of getting a second opinion at another hospital.

Life is a comedian and I am the bad joke. I was diagnosed at 35, when my husband and I were preparing to have our first child. I found a tiny bump sticking out of my breast, and...surprise! Dx 3/2019, IDC, Left, 3cm, Stage IIIB, Grade 3, 15/16 nodes, ER+/PR+, HER2+ Surgery 4/16/2019 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left Hormonal Therapy 6/11/2019 Zoladex (goserelin) Targeted Therapy 6/11/2019 Perjeta (pertuzumab) Targeted Therapy 6/11/2019 Herceptin (trastuzumab) Chemotherapy 6/11/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 11/11/2019 Whole-breast: Breast, Lymph nodes, Chest wall
Log in to post a reply

Page 1 of 1 (15 results)

Posts 1 - 15 (15 total)

Log in to post a reply

Sep 5, 2019 01:41PM pupmom wrote:

I think that is outrageous, and I would start MO shopping, if I were you. I had just two positive nodes and got a bone and 2 CTs. (I probably had too many and my husband finally put his foot down when my first MO wanted to do another CT, "just to check.") Anyways with your dx you should at least have one full scan.

Life is what happens while we're making other plans. Dx 10/18/2011, IDC, Right, 1cm, Stage IIA, Grade 1, 2/21 nodes, ER+/PR+, HER2-
Log in to post a reply

Sep 5, 2019 02:59PM illimae wrote:

I agree, especially stage 3 and HER2+. Personally, I’d push for scans or find another MO that would do them. Good luck!

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Targeted Therapy 1/2/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ (IHC) Radiation Therapy 10/20/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/23/2019 External: Brain Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Sep 6, 2019 10:30AM KBeee wrote:

Many MOs do not do routine scans for the fear that the scans themselves can cause cancer. The standard of care is generally not to do them, since the studies have shown that outcomes are the same as far as overall length of survival when scans are done versus not done.


That being said, those studies are from the 1990s. They were 2 small studies from Europe. They do not take into account all of the current day treatments we have, and it totally and completely irks me that the standard of care for monitoring so many patients is based on such old, small studies. I pick my battles, and just go with the "no monitoring", but the lack of current studies annoys me.

In the meantime, write down any worrisome symptoms in the notes on your phone. Keep a symptom log. Note the date it starts. When you add a new symptom, if old ones have cleared up, mark them with an X, rather than deleting them. This allows you to discuss symptoms you've had at your appointments, and seeing how many have resolves is reassuring. If any persist for 2 weeks, call. It's nice having the information on when it started documented. This is my system and it has worked well for me.

Karen. Dx 8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/25/2013 Mastectomy: Left, Right Chemotherapy 9/19/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/11/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/22/2014 Reconstruction (left); Reconstruction (right) Surgery 1/28/2015 Lumpectomy: Right Dx 2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- (FISH) Surgery 2/24/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Prophylactic ovary removal Dx 2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- (IHC) Chemotherapy 3/30/2015 AC + T (Taxol) Radiation Therapy 8/24/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)
Log in to post a reply

Sep 6, 2019 11:16AM - edited Sep 6, 2019 11:16AM by mac5

Is there a thread for Invasive and DCIS recurrence in the other breast?

I'm nine years away from mastectomy of my left breast. No PET scan and no NED. I was told the chance of recurrence in the right breast was 6% or less.

Today I've had a biopsy of the right breast for a mass that was characterized as a BIRAD 5.

This mass is so much like the previous one, I could probably tell you what the Pathology Report will say.

Beverl

Dx 7/20/2010, DCIS/IDC, Left, 2cm, Stage IIIB, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Dx 9/5/2019, ILC, Both breasts, 6cm+, Stage IV, metastasized to lungs, Grade 1, ER+/PR+, HER2-
Log in to post a reply

Sep 6, 2019 11:36AM Spookiesmom wrote:

I finished my first year of treatment 7 years ago. Scans were never brought up. I still have port, so regular flushes and MO visits.

Until January of this year, no scans. Then I mentioned to MO something weird was going on the other side. Yep, it’s back. Would regular scans caught it any earlier? Probably not.

Reoccurrence 3-19. Dx IDC, Stage IIIA, Grade 3
Log in to post a reply

Sep 6, 2019 11:54AM ElaineTherese wrote:

Hi!

I was Stage IIIA and HER2+, and I had a PET scan before chemo, a PET scan after chemo, and a PET scan to look at a spot on my left femoral neck after radiation. But, that was with MO #1, who was a scanner.

MO #2 is not a scanner. I get regular mammograms and dexa scans, but that's it.

I think it's MO-specific. Some scan; some don't. I'll bet you could find an MO who is a scanner if your really want to.

DX IDC June 28, 2014, 5 cm., 1 node tested positive (fine needle biopsy); 0/20 after neoadjuvant chemo + ALND; Grade 3; ER+ PR+ HER2+ Neoadjuvant chemotherapy starting 7/23/14 ACX 4, Taxol X 12, Perjeta X 4; Herceptin: one year Chemotherapy 7/23/2014 AC Targeted Therapy 9/17/2014 Perjeta (pertuzumab) Targeted Therapy 9/17/2014 Herceptin (trastuzumab) Chemotherapy 9/17/2014 Taxol (paclitaxel) Surgery 1/12/2015 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Hormonal Therapy 2/25/2015 Aromasin (exemestane), Zoladex (goserelin) Radiation Therapy 3/9/2015 Breast, Lymph nodes
Log in to post a reply

Sep 6, 2019 12:07PM IAmACat wrote:

Speak of the devil. My MO just scheduled a bone scan and a CT. 

Life is a comedian and I am the bad joke. I was diagnosed at 35, when my husband and I were preparing to have our first child. I found a tiny bump sticking out of my breast, and...surprise! Dx 3/2019, IDC, Left, 3cm, Stage IIIB, Grade 3, 15/16 nodes, ER+/PR+, HER2+ Surgery 4/16/2019 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left Hormonal Therapy 6/11/2019 Zoladex (goserelin) Targeted Therapy 6/11/2019 Perjeta (pertuzumab) Targeted Therapy 6/11/2019 Herceptin (trastuzumab) Chemotherapy 6/11/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 11/11/2019 Whole-breast: Breast, Lymph nodes, Chest wall
Log in to post a reply

Sep 10, 2019 06:55AM KBeee wrote:

Hoping they are clear.

Karen. Dx 8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/25/2013 Mastectomy: Left, Right Chemotherapy 9/19/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/11/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/22/2014 Reconstruction (left); Reconstruction (right) Surgery 1/28/2015 Lumpectomy: Right Dx 2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- (FISH) Surgery 2/24/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Prophylactic ovary removal Dx 2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- (IHC) Chemotherapy 3/30/2015 AC + T (Taxol) Radiation Therapy 8/24/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)
Log in to post a reply

Sep 11, 2019 11:33AM IAmACat wrote:

Thanks! They are scheduled for a month and a half from now.

Life is a comedian and I am the bad joke. I was diagnosed at 35, when my husband and I were preparing to have our first child. I found a tiny bump sticking out of my breast, and...surprise! Dx 3/2019, IDC, Left, 3cm, Stage IIIB, Grade 3, 15/16 nodes, ER+/PR+, HER2+ Surgery 4/16/2019 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left Hormonal Therapy 6/11/2019 Zoladex (goserelin) Targeted Therapy 6/11/2019 Perjeta (pertuzumab) Targeted Therapy 6/11/2019 Herceptin (trastuzumab) Chemotherapy 6/11/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 11/11/2019 Whole-breast: Breast, Lymph nodes, Chest wall
Log in to post a reply

Sep 11, 2019 11:49AM Xxxxxxxxxxxxxxx wrote:

I had a bone scan and a CT scan before I started chemotherapy. My MO said that if they had not been clear, "the whole game would have changed" Now I'm having rads and tamox and I don't know when I'll have scans again, but I think it's necessary to have a baseline. I hope your scans are clear. Good luck!

Log in to post a reply

Oct 27, 2019 09:40PM IAmACat wrote:

Thanks. Here are the results: some random spots that are not correlated with lesions, except for medullary sclerosis on the ninth rib that is too small to decide what it is, with close follow up suggested. I looked up medullary sclerosis, and it means a hard spot on the marrow side of the bone.

Life is a comedian and I am the bad joke. I was diagnosed at 35, when my husband and I were preparing to have our first child. I found a tiny bump sticking out of my breast, and...surprise! Dx 3/2019, IDC, Left, 3cm, Stage IIIB, Grade 3, 15/16 nodes, ER+/PR+, HER2+ Surgery 4/16/2019 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left Hormonal Therapy 6/11/2019 Zoladex (goserelin) Targeted Therapy 6/11/2019 Perjeta (pertuzumab) Targeted Therapy 6/11/2019 Herceptin (trastuzumab) Chemotherapy 6/11/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 11/11/2019 Whole-breast: Breast, Lymph nodes, Chest wall
Log in to post a reply

Oct 29, 2019 03:13PM vlnrph wrote:

So you’ll have another bone scan in a couple months?

I’m also ‘curious’ about your screen name especially since your avatar shows colorful flowers - I’ll venture to guess that perhaps you’re figuring on having the proverbial nine lives!

IDC too! 🎻💊👪🐩 🇫🇮 🌹🦋 Rt MX+DIEP 4-2011; ALND 5-2011 d/t micromets; TC X 4; tamoxifen; lymphedema 9-2011; switch to letrozole 3-2014 for 1 yr; bone mets 8-2018: Zometa, rads to spine, Faslodex/Versenio Dx 3/7/2011, ILC, 2cm, Stage IIA, Grade 2, 1/25 nodes, ER+/PR+, HER2-
Log in to post a reply

Oct 30, 2019 08:59PM IAmACat wrote:

Hi there! I don't know what is going to happen next. I like cats and I like that flower picture, but those two aren't connected.

Life is a comedian and I am the bad joke. I was diagnosed at 35, when my husband and I were preparing to have our first child. I found a tiny bump sticking out of my breast, and...surprise! Dx 3/2019, IDC, Left, 3cm, Stage IIIB, Grade 3, 15/16 nodes, ER+/PR+, HER2+ Surgery 4/16/2019 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left Hormonal Therapy 6/11/2019 Zoladex (goserelin) Targeted Therapy 6/11/2019 Perjeta (pertuzumab) Targeted Therapy 6/11/2019 Herceptin (trastuzumab) Chemotherapy 6/11/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 11/11/2019 Whole-breast: Breast, Lymph nodes, Chest wall
Log in to post a reply

Oct 30, 2019 10:38PM star2017 wrote:

I was told no scans too, unless there was cause for concern, like persistent pain or bloodwork issues.


I’ve had scans ordered twice and so far all good.


Dx@37, pregnant, BRCA2+ Dx 9/2017, DCIS/IDC, Right, 6cm+, Stage IIIA, Grade 3, 4/8 nodes, ER+/PR+, HER2- Surgery 10/16/2017 Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 11/28/2017 AC + T (Taxol) Surgery 4/17/2018 Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Silicone implant Radiation Therapy 5/21/2018 Whole-breast: Breast, Lymph nodes Surgery 10/24/2018 Prophylactic ovary removal; Reconstruction (left): Silicone implant Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Oct 31, 2019 01:59AM mccathyg wrote:

Strange. Proviso that I have had several recurrences and I live in Hungary. But I have CT, Bone scan, chest X-ray and ultrasound of my abdominal area annually together with blood tests. Basically I am on some sort of three monthly checks....

Dx 8/2000, Left, <1cm, Stage IA, Grade 1, ER+, HER2- Dx 8/2005, Left, <1cm, Stage IA, Grade 1, ER+, HER2- Dx 12/2010, Left, <1cm, Stage IIA, Grade 2, ER+, HER2- Dx 11/2015, Left, 2cm, Stage IIIB, Grade 3, ER+/PR+, HER2- Chemotherapy 2/22/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 6/1/2016 Femara (letrozole) Dx 7/2019, IDC, Left, <1cm, ER+/PR-, HER2- Hormonal Therapy Aromasin (exemestane) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast Surgery Mastectomy: Left Surgery Mastectomy: Left; Reconstruction (left): Latissimus dorsi flap Chemotherapy Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Surgery Lumpectomy: Left Surgery

Page 1 of 1 (15 results)