Join Us

We are 219,564 members in 84 forums discussing 161,573 topics.

Help with Abbreviations

Topic: Approaching 5 years out, anxious about new breast changes

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

Meet others concerned about developing a recurrence or metastases.

Posted on: Jul 13, 2020 09:07AM

Jinx27 wrote:

Hello All,

Im a 31 year old patient who is currently doing Arimidex and Ovarian Suppression. 09/8/2020 will be my 5th year out and yesterday I noticed some changes in both breasts last week.

I did just have my Lupron injection last week and with that comes some changes, I do experience tenderness, fullness but two specific areas are painful to touch and achy. This has started before the Lupron, for about a month. Ive been staring at them both in the mirror for hours trying to notice anything different in appearance Im a darker complexion so I don't see any redness but I do notice a small color change in the areas where there is pain.

I have a routine follow up with my MO next week via tele-doc but it feels like time is moving slower than I want. I sent her a message informing her of what I noticed. Im thinking of tracing the areas out for her and showing her during my visit.

How do I let her know this is bothering me and I really would like imaging etc?


Dx 9/8/2015, DCIS/IDC, Both breasts, 4cm, Stage IIB, Grade 3, 3/36 nodes, ER+/PR+, HER2- Surgery 11/17/2015 Reconstruction (left): Free TRAM flap; Reconstruction (right): Free TRAM flap Chemotherapy 1/1/2016 AC + T (Taxol) Hormonal Therapy 8/29/2016 Arimidex (anastrozole)
Log in to post a reply

Page 1 of 1 (9 results)

Posts 1 - 9 (9 total)

Log in to post a reply

Jul 13, 2020 09:56PM MinusTwo wrote:

Yes, I would send the doc a "my chart" or email message about your concern. Maybe she'll just agree to an in person visit instead of tele doc. Sometimes with their experience a look & a feel will make it clear.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
Log in to post a reply

Jul 14, 2020 12:08AM Jinx27 wrote:

Thank you, I was able to book an appointment for tomorrow morning with her NP.

Dx 9/8/2015, DCIS/IDC, Both breasts, 4cm, Stage IIB, Grade 3, 3/36 nodes, ER+/PR+, HER2- Surgery 11/17/2015 Reconstruction (left): Free TRAM flap; Reconstruction (right): Free TRAM flap Chemotherapy 1/1/2016 AC + T (Taxol) Hormonal Therapy 8/29/2016 Arimidex (anastrozole)
Log in to post a reply

Jul 14, 2020 02:37PM MinusTwo wrote:

JInx - good. Please let us know.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
Log in to post a reply

Jul 14, 2020 03:13PM Jinx27 wrote:

Just got back! Saw the NP she also had a nursing student with her, we agreed on doing a manual breast check, so they both checked me while sitting up and laying down. No lumps felt, but loads of tenderness.

We were discussing how my double mx and reconstruction can cause "phantom pain" she also suggested that my Lupron injection (which was administered last week) may be the culprit for the pain and tenderness. I think that I need to start recording my SE's down to remind myself what to expect.

I get a quarterly shot of Lupron and tend to forget my SE's after the 3rd week, literally its out of sight out of mind. I work and go to school and ignore the pain sometimes. The pain and tenderness remind me soo much of when I was initially diagnosed I went into panic mode, not to mention the mood changes and fatigue coupled with worry took me over the hill. Its time I develop a game plan on how to handle the SE's.

Lastly we did agree to an ultrasound and 3D mammography (even though I dont have any breast tissue) it eases my mind. That will be on the 23rd and I will follow up with you all to let you know what happens. Im hoping its just pesky SE's from the Lupron. Im prepared either way!

I really appreciate this site, from my initial diagnosis 5 years ago, Ive been able to chat with soo many sweet souls. Bless you and thank you.

HugHeart

Dx 9/8/2015, DCIS/IDC, Both breasts, 4cm, Stage IIB, Grade 3, 3/36 nodes, ER+/PR+, HER2- Surgery 11/17/2015 Reconstruction (left): Free TRAM flap; Reconstruction (right): Free TRAM flap Chemotherapy 1/1/2016 AC + T (Taxol) Hormonal Therapy 8/29/2016 Arimidex (anastrozole)
Log in to post a reply

Jul 14, 2020 06:12PM MinusTwo wrote:

Jinx - thank for the update. Hope it's the Lupron. A log sounds like a good idea. Since I too have had a BMX, I don't have mammograms - but I am checked with ultrasounds. They were recommended every two years. Probably good to have the follow up to relieve your mind.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
Log in to post a reply

Jul 22, 2020 11:05PM KBeee wrote:

I am glad that they are doing imaging. It is so scary to have new symptoms. I record all of my symptoms in a thread on my "notes" app on my phone. I list the date, symptom, and if/when it resolves, I simply mark an "X" next to it. This allows me to see trends with time and also symptoms that are recurring. Hoping your mammogram and ultrasound have good news

Karen. Dx 8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/26/2013 Mastectomy: Left, Right Chemotherapy 9/20/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/12/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/23/2014 Reconstruction (left); Reconstruction (right) Surgery 1/29/2015 Lumpectomy: Right Dx 2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- (FISH) Dx 2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- (IHC) Surgery 2/25/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Prophylactic ovary removal Chemotherapy 3/31/2015 AC + T (Taxol) Radiation Therapy 8/25/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)
Log in to post a reply

Jul 23, 2020 06:21PM Jinx27 wrote:

Hello!!

My appointment for imaging was today, the radiologist decided to just do an ultrasound of each breast and they all were CLEAR!! Hug I purposefully scheduled a followup with my oncologist today too, so we discussed the side effects and why it may important for me to start recording them down. I have had various side effects that usually peak the week after my injection. MinusTwo thank you for listening to me Heart

As I stated before I usually am soo busy with work/school/life that I dont record them down. Kbeee I have a small journal that I will start recording them in. I definitely think it was the Lupron, my MO said that fatigue, breast tenderness, mood changes, bone pain are common. I also experienced a tightness of my chest, I had to sit down in order to relax. Anxiety perhaps?

My MO wants to see me again in Sept to check to see if these things persist, if they go away then we know its the Lupron and Arimidex.

Meanwhile I will continue to work on being active everyday and my better eating habits to control my elevated cholesterol and A1C levels.

Lastly we also discussed me coming off of Lupron and Arimidex once I hit my 5th year in 2021, many studies have shown the benefit of 10 years of hormone therapy and she stated taking Tamoxifen for the last 5 as an option. I plan on visiting a fertility specialist regarding my options as well and will do that in 2021 if all goes well.

I appreciate this site soo much!!

Dx 9/8/2015, DCIS/IDC, Both breasts, 4cm, Stage IIB, Grade 3, 3/36 nodes, ER+/PR+, HER2- Surgery 11/17/2015 Reconstruction (left): Free TRAM flap; Reconstruction (right): Free TRAM flap Chemotherapy 1/1/2016 AC + T (Taxol) Hormonal Therapy 8/29/2016 Arimidex (anastrozole)
Log in to post a reply

Jul 23, 2020 10:37PM MinusTwo wrote:

GREAT news Jinx.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
Log in to post a reply

Aug 18, 2020 10:27AM KBeee wrote:

Great news!


Karen. Dx 8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/26/2013 Mastectomy: Left, Right Chemotherapy 9/20/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/12/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/23/2014 Reconstruction (left); Reconstruction (right) Surgery 1/29/2015 Lumpectomy: Right Dx 2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- (FISH) Dx 2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- (IHC) Surgery 2/25/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Prophylactic ovary removal Chemotherapy 3/31/2015 AC + T (Taxol) Radiation Therapy 8/25/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)

Page 1 of 1 (9 results)