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Topic: Barely finished treatment and my cancer has spread

Forum: Stage IV/Metastatic Breast Cancer ONLY —

A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.

Posted on: Jan 12, 2019 01:26AM - edited Jan 29, 2019 03:52AM by ladinred26

ladinred26 wrote:

I finished up my year of treatment in July. I was diagnosed with invasive lobular breast cancer. I had a double mastectomy along with chemo and radiation.

This past week or so, I have had pain in my back around the kidneys. I figured it was kidney stones. The pain became unbearable and I went to a prompt care. They did not find any infection or stones, but they did see several spots on my liver.

I was set to see my oncologist on Jan 28th, so I had recently done a blood work panel. Unfortunately the breast cancer market CA 27.29 is at 773 when normal is below 38.

Saw my oncologist yesterday and he indicates that yes the cancer has spread but we won't know the extent until I can get a PET scan and a liver biopsy. Of course, the insurance approval process drags and I probably won't get approval until mid next week.

I'm terrified as I can just feel the cancer spreading in my body. If it moved that fast within months a week delay or more seems way too long.


mindi Dx 5/31/2017, ILC, Right, 6cm+, Stage IIIC, ER+/PR+, HER2- Chemotherapy 7/12/2017 AC + T (Taxol) Dx 1/2019, ILC, Both breasts, Stage IV, metastasized to bone/liver Radiation Therapy Whole-breast: Breast, Lymph nodes Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Tissue expander placement
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Jan 12, 2019 02:02PM Grannax2 wrote:

ladyinred. I'm sure you are scared. It's a frightening disease. Do you know what type of BC you have? Mine is ERPR + and HER 2 -. Depending on your receptor studies you might be able to take Ibrance and letrozole both are pills. What chemo did you have? I/L worked well for me for almost two years. Especially on my lung and chest mets. For my liver mets I had a local procedures called radioembolization. This is done by an interventional radiologist. It worked great for me for 18 months. I've just started on Aromasin and Afinitor, a targeted therapy. Both are pills. My scans showed I have progression in my lung, chest and liver.

I'm sure you had a BX at the beginning, your new BX might show some differences from your first one. If so that would give you some different treatment options. Sounds like your MO is doing all the right things. You can read a lot of good information on the liver mets thread. Yes, the PET will tell you more info that your MO needs to make sure of what TX to put you on. Let us know what you find out.💞

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Jan 13, 2019 02:13PM vlnrph wrote:

Wow red that is a dramatic story. Perhaps you can add some of your specific history to your signature so we can better understand what you have been through. Since you mention having had ILC, it was probably ER/PR+ so maybe you're taking tamoxifen or an aromatase inhibitor?

Meanwhile, you did it before and, once a treatment plan is in place, you can do it again!

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-
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Jan 15, 2019 04:40AM ladinred26 wrote:

I've been taking tamoxifen since I finished radiation. I was estrogen positive and HER2 negative in my original diagnosis. Though my doc says it could be different now. We won't know until I get approved liver biopsy.

It feels like a terribly long wait to get insurance approval. They have 72 hours to give approval on an urgent case. So I have to wait until at least tomorrow.

At least once I get the tests I will know what I'm up against. I just don't really want to hear that I have just weeks left to live. I am just so scared to death. My cancer spread so quickly after treatment ended that I can't help thinking the worst.

I am a mess, but hopefully it won't be much longer before I get some answers.

mindi Dx 5/31/2017, ILC, Right, 6cm+, Stage IIIC, ER+/PR+, HER2- Chemotherapy 7/12/2017 AC + T (Taxol) Dx 1/2019, ILC, Both breasts, Stage IV, metastasized to bone/liver Radiation Therapy Whole-breast: Breast, Lymph nodes Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Tissue expander placement
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Jan 15, 2019 06:07AM - edited Jan 15, 2019 06:07AM by MameMe

Just sending hugs and some understanding. What you feel was what I felt on first getting a stage 4 diagnosis. Hang in there, and keep in touch with your oncology team, someone there might be able to be a point person for you during the next couple of months. Its very scary to imagine what could be happening, but often once a treatment is chosen, things settle down. I hope you get the information you need soon! There is lots of support for you in the forum for stage 4, so do check that out even though you won't believe you are doing that! So far, I have had almost 5 years but thought at first I only had a few months.

Take the best care of yourself that you can, and ask for help. Warmly, Mame

Widespread, low volume mets to eye, lungs, chest wall and bones, dx 4/14/14. "There's gotta be a pony in this s--t somewhere..." Dx 2/2003, IDC, Right, 2cm, Stage IIA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Dx 12/2012, IDC, Left, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR-, HER2- Dx 4/4/2014, IDC, Left, 2cm, Stage IV, metastasized to bone/lungs/other, Grade 2, 0/1 nodes, ER+/PR-, HER2- (IHC) Chemotherapy 4/30/2017 Doxil (doxorubicin) Chemotherapy 2/28/2018 Halaven (eribulin) Chemotherapy Xeloda (capecitabine) Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib) Chemotherapy Gemzar (gemcitabine) Targeted Therapy Afinitor (everolimus) Hormonal Therapy Aromasin (exemestane) Chemotherapy Taxol (paclitaxel)
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Jan 15, 2019 09:29AM jensgotthis wrote:

These early days are so incredibly scary. Once you have a plan, I promise, it will get a little easier. There are amazing new medications available that are effective and allow a good quality of life. Do you have people you can talk with, take on appointments with you, sit with, cry with, etc...?

I remember when I was where you are now. I was recently separated from my husband with a 6 year old at home. I sobbed for him. I also got pissed off as I had just bought new furniture and here I was with this terminal diagnosis. My rages went from the sobbering to the unfair. I'm three years in now, with no evidence of active cancer, and I still have highs and lows, but I'm living life. You will too. We're here for you.

Dx 12/3/2015, IDC: Tubular, Left, 2cm, Stage IV, metastasized to bone, Grade 1, 0/12 nodes, ER+/PR+, HER2- Chemotherapy 1/5/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 5/2/2016 External: Bone Hormonal Therapy 5/24/2016 Surgery 5/25/2016 Lymph node removal: Left; Mastectomy: Left Targeted Therapy 9/14/2016 Ibrance (palbociclib) Hormonal Therapy 9/14/2016 Femara (letrozole) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Targeted Therapy
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Jan 15, 2019 09:31AM jensgotthis wrote:

Stay off Dr. Google - the stats you are going to find are outdated and the science of collecting those is not good.

Also, let's find the link to Bestbirds guide. It is a tremendous resource on our disease and our treatment options. I'll poke around for the link but welcome any friends here to post if if you find it faster.

Dx 12/3/2015, IDC: Tubular, Left, 2cm, Stage IV, metastasized to bone, Grade 1, 0/12 nodes, ER+/PR+, HER2- Chemotherapy 1/5/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 5/2/2016 External: Bone Hormonal Therapy 5/24/2016 Surgery 5/25/2016 Lymph node removal: Left; Mastectomy: Left Targeted Therapy 9/14/2016 Ibrance (palbociclib) Hormonal Therapy 9/14/2016 Femara (letrozole) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Targeted Therapy
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Jan 15, 2019 11:10AM ladinred26 wrote:

I am truly trying to stay off Dr Google as I know it won't give me any answers....I just have to wait for the tests.

My sister, thankfully, let me parents know this afternoon. I just couldn't bear to tell them myself as my parents have experienced so much grief the past few years. First my 13-year-old nephew was killed, then my grandmother passed away, then my old sister had a very rare, aggressive breast cancer and passed away two years ago, my aunt Sharon passed and then my uncle Dick. Let alone the loss of their friends.

It just all seems so unfair to them.

mindi Dx 5/31/2017, ILC, Right, 6cm+, Stage IIIC, ER+/PR+, HER2- Chemotherapy 7/12/2017 AC + T (Taxol) Dx 1/2019, ILC, Both breasts, Stage IV, metastasized to bone/liver Radiation Therapy Whole-breast: Breast, Lymph nodes Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Tissue expander placement
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Jan 15, 2019 02:28PM vlnrph wrote:

Bestbird’s guide is pinned at the top of this forum. It is an amazing piece of work.

With your sister having had BC, has anyone suggested genetic counseling? Perhaps there is a known mutation in the family that helped you decide on having the double mastectomy. Or, you elected that procedure because ILC can be difficult to detect. Whatever the case, you made good decisions previously and will do so again

Your parents have been through quite a bit but I’ve always thought we develop resiliency when beset by loss which is inevitable as we age. I’m sure you were a support to them during all those situations so now you can let them return the favor!

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-
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Jan 16, 2019 12:04AM NoteRed wrote:

you dont write what was your diagnosis at first, only that you had ILC. Before or after you surgery did your doctor sent you for CT or MRI? What therapy did you finished? you see every cancer, so far that I know, its different and its better to know where you stand

Dx 2/2/2018, ILC, Left, 1cm, Stage IIA, Grade 3, 7/17 nodes, ER+/PR+, HER2- (SPOT) Surgery 2/21/2018 Lymph node removal: Underarm/Axillary; Mastectomy: Left Chemotherapy 3/25/2018 Taxol (paclitaxel) Chemotherapy 6/27/2018 CEF
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Jan 16, 2019 11:38AM EV11 wrote:

ladinred-- I am sorry you are dealing with this, so soon after you treatment ended last summer...oftentimes lobular has spread but it's not been detected at the time of primary diagnosis.

Be sure that your PET scan has a CT component, and let the radiologist reading the scans know that you have lobular MBC and to please look for thickening and stranding, especially in the ovaries/Fallopian tubes/peritoneal regions. Lobular has a much greater propensity than ductal to metastasize early to those areas (and especially to bone--have you had a bone scan???) and when lobular metastasizes it frequently forms thin net/sheets/webs of cells more than the typical lump or mass that ductal cancer forms.

I'm glad to hear that you are having liver biopsy-- it's unusual that lobular spreads early to the liver-- not unheard of, but it's not the common metastatic pattern for lobular. It will be good to know if you have a mixed ductal/lobular cancer, or if your lobular has mutated to ER- or HER2+...(ER- and HER2+ lobular are both more likely to spread to liver and lungs than ER+/HER2- lobular...) The biopsy will be very helpful in determining characteristics. Are you also sending it for genomic sequencing (Foundation One) as well as the more usual histologic analysis that the local pathology department will do?


Please let us know what you find out, and what you decide to dog or your treatment. Weare here to provide support and help answer questions...

Breathe. Try to stay focused on what you know and not let your mind go to crazy places.... It will feel more manageable once you have a treatment plan in place.

Elizabeth

De novo stage 4 May 2015 ILC, pleomorphic, Luminal B. Mets to bone/marrow, ovaries, peritoneum, omentum, colon. Bladder mets 4/2019. Primary: ER+/PR+/HER2-; mets: ER+/PR-/HER2 equivocal; mutations: CDH1, ESR1, TBX3, NTRK3, ALK Dx 5/2015, ILC, Left, <1cm, Stage IV, metastasized to bone/other, Grade 2, ER+/PR+, HER2- (FISH) Targeted Therapy 5/31/2015 Hormonal Therapy 5/31/2015 Femara (letrozole) Targeted Therapy 6/1/2015 Ibrance (palbociclib) Chemotherapy 9/7/2018 Xeloda (capecitabine)
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Jan 24, 2019 12:02PM - edited Jan 24, 2019 12:04PM by ladinred26

I finally received the results of my PET scan today. I have several spots on my liver, both lobes, and quite a bit of spread into bones in my lower back, spine and pelvis. This helps explains some of the crazy back pain I have had that was difficult to treat

I am having a liver biopsy on Friday to determine the pathology of the cancer. My onc told me that metastatic breast cancer can morph.

I had hormone + and HER2 - as part of my original diagnosis. They originally thought the tumor in my right breast was 7 cm. I finished chemo on oct 26 2017. Had a PET shortly after that. It came back clean. However when I had surgery in February my tumor was actually 10 cm but they were able to get clean margins. It had spread to two lymph nodes. But others were clear.

Due to surgery complications I didn't start radiation until May 2018 and finished up July 6 2018

I had an appt with my onc in oct 2018 and forgot to get the blood work he didn't think it was a problem so I could just do it for my appt in Jan 2019

I have been beating myself up about not getting the blood test in October why oh why didn't I do it I could be three months ahead of the game!

I look back now and wonder if we shouldn't have redone the PET scan after my surgery or done the cancer marker blood tests sooner there is nothing I can do now but I am going thru a bit of beating myself up

I see my onc again on feb 4 to get my treatment plan.

mindi Dx 5/31/2017, ILC, Right, 6cm+, Stage IIIC, ER+/PR+, HER2- Chemotherapy 7/12/2017 AC + T (Taxol) Dx 1/2019, ILC, Both breasts, Stage IV, metastasized to bone/liver Radiation Therapy Whole-breast: Breast, Lymph nodes Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Tissue expander placement
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Jan 24, 2019 12:28PM vlnrph wrote:

Stop with the self-flagellation! Many doctors do not perform routine blood tests, and won't even consider tumor markers until metastatic disease is diagnosed.

Use your energy to read a little on this site. It may help to educate yourself. There is much that can be done, especially with bone problems. You might benefit from radiation to relieve pain, vertebroplasty and/or IV bisphosphonate therapy to strengthen the spine, estrogen inhibition (depending on the biopsy result), etc.

Since your insurance is so fussy, they could have denied an earlier PET scan which means you can quit thinking that you somehow missed the boat. Instead, call on everyone who asked how they can help and give them jobs. Request some casseroles for your freezer, provide a shopping list to be filled - you don't need to go into crowded stores during the height of the cold and flu season. Then, as suggested above, breathe.

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-
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Jan 24, 2019 12:58PM ladinred26 wrote:

thx so much for the kind words vlnrph.

mindi Dx 5/31/2017, ILC, Right, 6cm+, Stage IIIC, ER+/PR+, HER2- Chemotherapy 7/12/2017 AC + T (Taxol) Dx 1/2019, ILC, Both breasts, Stage IV, metastasized to bone/liver Radiation Therapy Whole-breast: Breast, Lymph nodes Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Tissue expander placement
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Jan 25, 2019 08:45AM ladinred26 wrote:

Feeling a bit better as I realized that I did have an x-ray of my lower back in September and a bone density test in October and neither of these caught signs of the cancer. I know they are not the best tests for detecting cancer, but since it is quite widespread in the bones of my lower back it was definitely a possibility. Stopping the self-flaggelations.

mindi Dx 5/31/2017, ILC, Right, 6cm+, Stage IIIC, ER+/PR+, HER2- Chemotherapy 7/12/2017 AC + T (Taxol) Dx 1/2019, ILC, Both breasts, Stage IV, metastasized to bone/liver Radiation Therapy Whole-breast: Breast, Lymph nodes Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Tissue expander placement
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Feb 5, 2019 06:16AM ladinred26 wrote:

Well not so great news at the doc today. The cancer has spread to my brain. Six different spots. Five are fairly small but one is 3.6 cm and is on the cerebellum. I went out for lunch with family and had three tall vodkas and cranberry. Feeling roost at the moment and ready to take a nap. Meeting with the radiation doc tomorrow morning to look at radiation on my brain. I’m not ready to die

mindi Dx 5/31/2017, ILC, Right, 6cm+, Stage IIIC, ER+/PR+, HER2- Chemotherapy 7/12/2017 AC + T (Taxol) Dx 1/2019, ILC, Both breasts, Stage IV, metastasized to bone/liver Radiation Therapy Whole-breast: Breast, Lymph nodes Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Tissue expander placement
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Feb 5, 2019 11:02AM Chicagoan wrote:

Ladyinred-That totally sucks but many women on this forum have tackled brain mets with either the gamma knife or Whole Brain Radiation. Keep an open mind-brain mets are not necessarily a death sentence. Glad you went out for lunch and drinks-keep on living!

Dx 9/21/2016, IDC, Left, Stage IV, metastasized to bone, Grade 1, ER+/PR+, HER2- Radiation Therapy 9/26/2016 Hormonal Therapy 10/5/2016 Femara (letrozole) Targeted Therapy 10/26/2016 Ibrance (palbociclib)

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