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Topic: recurrence after stage III TNBC?

Forum: Just Diagnosed With a Recurrence or Metastasis —

Meet others who are just facing the diagnosis of a recurrence of breast cancer or metastatic (advanced) disease. You are NOT alone.

Posted on: Jan 23, 2019 11:44AM

pesky904 wrote:

Not sure if this is the right place for this. I was dx stage III TNBC June 2017 with a 6cm tumor. Had neoadjuvant Taxol, tumor grew to 10cm, was switched to AC in September 2017. Tumor shrunk to about 3cm and I had a double mastectomy end of November 2017. Then had 6 weeks radiation at the beginning of 2018 (was supposed to have 4 cycles of Cisplatin but only had 2 and was taken off due to side effects). Then had 6 months of Xeloda. So a ton of treatment. Finished Xeloda in October 2018 and had exchange surgery end of November 2018.

On New Year's Eve, I felt a small lump almost exactly where my initial biopsy was. The problem is, I have no idea what my "new" breast is supposed to feel like. I've never really gotten feeling back in the entire area since my mastectomy in 2017. Even my underarm is still somewhat numb and so it all feels a bit thicker. The left breast (prophylactic mastectomy) feels great. There's not a single lump or bump. It's nice and smooth and "loose" - it's like a half inch lower than the right breast.

The right reconstructed breast is firmer, which I was told to expect due to radiation. But on the outer lower quadrant, there is a lump and the rib feels way thicker than the left side. The lump feels exactly like the lump that I found 2 years ago that grew and turned out to be cancer.

My oncologist felt the lump. She said it felt like a pea. She sent me for an MRI and to see my breast surgeon. He's out on medical leave so I saw his PA. She sent me for an ultrasound. In the end, the MRI showed BIRADS 2 but the radiologist who did the ultrasound told me there was "absolutely nothing" seen on the MRI or the ultrasound, not even scar tissue or fat necrosis. So I asked what is the lump I'm feeling then? No one gave me an answer. I would've been fine hearing, "Oh, it's just scar tissue" or "It's just fat" but to say there's nothing there when I feel it is not comforting.

It's almost 2 weeks later and the lump feels more palpable to me and the whole area feels thicker. But now I'm afraid to say anything. I feel like I'll look crazy and paranoid of recurrence.

My oncologist said recurrence around the area of the initial core biopsy a common site of recurrence. That's why she was initially concerned. For anyone who had a recurrence after mastectomy and reconstruction with silicone implant, what did it feel like - the lump and the whole area? How did you distinguish the lump from scar tissue or fat necrosis?

​dx 6/17 stage III TNBC 6cm tumor Taxol 7-8/17 tumor grew to 10cm AC 9-10/17 tumor shrunk to 3cm DMX 11/17 expanders placed Rads 33 doses + cisplatin 1/18 Cisplatin discontinued due to SEs Xeloda 4-10/2018 Exch surgery 11/18
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Jan 25, 2019 06:41PM pesky904 wrote:

Thanks, buttonsmachine. I am going to the plastic surgeon on February 5 - although he's always stressing how horrible radiation is and how hard it is to do reconstruction on a radiated breast, so he blames everything on the fact that I had radiation. Plus, a plastic surgeon is not a cancer doctor and doesn't take into account that I'm high risk for recurrence. I have no doubt he's likely going to just feel it, decide it's probably fat or scar tissue and normal and not to worry. I'll end up having to push my MO to see me again.

​dx 6/17 stage III TNBC 6cm tumor Taxol 7-8/17 tumor grew to 10cm AC 9-10/17 tumor shrunk to 3cm DMX 11/17 expanders placed Rads 33 doses + cisplatin 1/18 Cisplatin discontinued due to SEs Xeloda 4-10/2018 Exch surgery 11/18
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Jan 26, 2019 07:09AM pesky904 wrote:

Who knows, maybe this is all nothing. Now the entire rim of the implant along the outer side of it feels lumpy. Maybe I’m getting that capsular contracture of issue or something. The breast feels really firm and tight.

There is the very clear palpable lump at 10 o’clock. The one I’ve been talking about, same place as my original biopsy. Now I feel a lump starting in the upper quadrant right in the lower part of my armpit.

It’s probably scar tissue. Confusing because I was under the impression that there was very very little tissue at all left in the breast. This feels like a lot of lumpiness for a breast that only has an implant and barely any tissue. I’ve never felt anything in the armpit before, not even originally when I had a 2 cm lymph node there (no cancer in the node then, it was just enlarged for some reason.)

It’s been almost 2 months since the exchange surgery so maybe as the implant is settling, more scar tissue is clumping up that I can feel.

​dx 6/17 stage III TNBC 6cm tumor Taxol 7-8/17 tumor grew to 10cm AC 9-10/17 tumor shrunk to 3cm DMX 11/17 expanders placed Rads 33 doses + cisplatin 1/18 Cisplatin discontinued due to SEs Xeloda 4-10/2018 Exch surgery 11/18
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Jan 26, 2019 01:23PM pesky904 wrote:

has anyone ever experienced that necrosis or scar tissue in armpitafter reconstruction with silicone implants?

I am seriously considering having the implants removed and not getting reconstruction done again until I pass the five-year mark. Now I’ve got this prominent lump in the area where my biopsy was and two small lumps in my armpit at the very edge of the implant. These implants don’t even look good, and now they are causing these lumps. I’m not going to spend the next few years wondering if every lump is cancer or something caused by the implant. It seems like more trouble than it’s worth.

​dx 6/17 stage III TNBC 6cm tumor Taxol 7-8/17 tumor grew to 10cm AC 9-10/17 tumor shrunk to 3cm DMX 11/17 expanders placed Rads 33 doses + cisplatin 1/18 Cisplatin discontinued due to SEs Xeloda 4-10/2018 Exch surgery 11/18
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Jan 26, 2019 09:16PM pesky904 wrote:

and now I have a very tiny lump on the bone in between my breasts, right next to the edge of the implant on the non cancer side. This is getting ridiculous. They need to do a pet scan or something.


​dx 6/17 stage III TNBC 6cm tumor Taxol 7-8/17 tumor grew to 10cm AC 9-10/17 tumor shrunk to 3cm DMX 11/17 expanders placed Rads 33 doses + cisplatin 1/18 Cisplatin discontinued due to SEs Xeloda 4-10/2018 Exch surgery 11/18
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Jan 26, 2019 11:41PM Parrynd1 wrote:

Document all this with your MO so you can get this figured out. Cancer is so stressful, but it’s not always cancer even if it’s something else. Give yourself the peace of mind...it’s worth so much! I hope they can get you in and figure this out soon soon soon

Dx 9/4/2016, IDC, Right, 4cm, Stage IIIA, Grade 3, ER-/PR-, HER2- Chemotherapy 11/29/2016 Other Chemotherapy 2/21/2017 AC Surgery 5/17/2017 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 6/14/2017 Carboplatin (Paraplatin), Taxol (paclitaxel) Radiation Therapy 10/4/2017 Whole-breast: Breast, Lymph nodes Dx 3/2018, IDC, Right, 5cm, Stage IV, metastasized to brain/bone/lungs/other, Grade 3, 1/1 nodes, ER-/PR-, HER2- Radiation Therapy 5/23/2018 External: Brain Chemotherapy 6/27/2018 Other Targeted Therapy 10/1/2018 Avastin (bevacizumab) Radiation Therapy 12/28/2018 Whole-breast: Breast Chemotherapy 12/30/2018 Halaven (eribulin) Dx 1/29/2019, IDC, <1cm, Stage IV, metastasized to other, Grade 3, 1/1 nodes, ER-/PR-, HER2- (FISH) Dx 2/5/2019, 3cm, Stage IV, metastasized to brain, Grade 3, ER-/PR-, HER2- (FISH) Surgery Chemotherapy Other
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Jan 27, 2019 06:05AM pesky904 wrote:

There is definitely something very wrong with the right breast which was the cancer side. I just woke up from a night sleep and I have “pillow creases” on the breast. You know the way you get pillow creases on your face if you are retaining fluid? Clearly I’m retaining fluid in this breast now too.

The little tiny lump on my sternum feels like a little spike jutting out of the bone. And it’s very very itchy.

​dx 6/17 stage III TNBC 6cm tumor Taxol 7-8/17 tumor grew to 10cm AC 9-10/17 tumor shrunk to 3cm DMX 11/17 expanders placed Rads 33 doses + cisplatin 1/18 Cisplatin discontinued due to SEs Xeloda 4-10/2018 Exch surgery 11/18
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Jan 27, 2019 10:23PM Flynn wrote:

I haven’t done reconstruction yet but I was wondering if you posted in the reconstruction area of the forum? They may have some good insights on implant/radiated tissue issues. I’m glad that you will be getting it checked out.

Dx 2/2017, IDC, 6cm+, Stage IIB, Grade 3, ER-/PR-, HER2- Chemotherapy 2/28/2017 AC Chemotherapy 9/1/2017 Carboplatin (Paraplatin), Taxol (paclitaxel) Surgery 11/29/2017 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 2/1/2018 Whole-breast: Breast, Chest wall Chemotherapy 8/1/2018 Xeloda (capecitabine)
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Jan 28, 2019 07:45AM pesky904 wrote:

Know what, that form probably would’ve made the most sense to post in. The fact that my mind went straight to “recurrence” goe to show you how high alert you are after cancer, LOL.

​dx 6/17 stage III TNBC 6cm tumor Taxol 7-8/17 tumor grew to 10cm AC 9-10/17 tumor shrunk to 3cm DMX 11/17 expanders placed Rads 33 doses + cisplatin 1/18 Cisplatin discontinued due to SEs Xeloda 4-10/2018 Exch surgery 11/18
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Jan 28, 2019 09:39AM KBeee wrote:

My PS was the one who actually removed my lump. My BS was "sure" it was related to reconstruction, and even though PS was 99% sure it was benign, he agreed to biopsy when I said I was sure it was a recurrence and needed to be able to sleep at night. He literally squeezed me in the next day. He was shocked when it came back as cancer, as was BS. Always trust your gut. If you are having further changes, call and be seen again.

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)
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Jan 28, 2019 09:48AM pesky904 wrote:

Thanks, KBee. I just wonder how many people experience new lumps cropping up a few months after implant placement. I'm reading in the "Reconstruction" forum and people talk about lots of complications, but lumps are not mentioned as much as I thought they would be.

And like I said, I had a huge tumor and a mastectomy, so I assumed there was a negligible amount of breast tissue left to begin with, so how is there this much "lumpiness"? What are these lumps even made out of if all that's supposedly in there is muscle, a teeny tiny bit of breast tissue and a big ole silicone implant?

Even if it's scar tissue, why is there so much tissue still in there after mastectomy and then exchange surgery a year later? If the PS went to put the implants in and saw a whole bunch of scar tissue, wouldn't he have removed it when he placed the implant?

​dx 6/17 stage III TNBC 6cm tumor Taxol 7-8/17 tumor grew to 10cm AC 9-10/17 tumor shrunk to 3cm DMX 11/17 expanders placed Rads 33 doses + cisplatin 1/18 Cisplatin discontinued due to SEs Xeloda 4-10/2018 Exch surgery 11/18
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Jan 28, 2019 10:57AM - edited Jan 28, 2019 11:00AM by siddhivinayak

Hi Pesky.I read your earlier posts.My mom also diagnosed with stage 3 tnbc with lots of possitive nodes.Her onco opted for lumpectomy+chemo +radiation.Right after next day of surgery her breast were hard and a huge lump at the site of lump.This place got harder after radiation and has changed to a shape of lump which was not visible on mammo but on usg.At the hospital they dont found anything at her first mammo after radiation.But we did an ultrasound from outside and the doctor confirmed reccurence on the basis of whatever he had seen on ultrasound which stated that two ill defined hypoechoic masses have been seen.We went back to the hospital and they refused to see that ultrasound report.But they agreed to redo mammo+ultrasound.They found something this time and they biopsied it but it was benign.

Then again on mammo after 6 months they found something and gave it a score of BIRADS-4.This time again biopsy benign.

Then on the PET scan of jan 2018 they found multiple lung nodules and two masses in breast that are fdg avid.This time again biopsy and all benign.

Now again my mom is feeling heaviness and the same lump which she said is bigger now we will visit her onco on coming friday.

Dx 5/15/2015, IDC, Left, 2cm, Stage IIIA, Grade 3, 8/22 nodes, ER-/PR-, HER2- Chemotherapy Surgery
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Feb 5, 2019 01:41PM - edited Feb 5, 2019 02:32PM by pesky904

Well, as expected, the surgeon today said that these lumps are to be expected at just over two months out from surgery. He said he feels they are normal surgical occurrences, despite the fact that the one lump is exactly where my original cancer was and has gotten bigger. He said they are bits of tissue that got separated and are now coming back together. He understands that I am high risk for recurrence but said that he just operated on me two months ago and if I had cancer in me, he would have seen it. Thoughts??

​dx 6/17 stage III TNBC 6cm tumor Taxol 7-8/17 tumor grew to 10cm AC 9-10/17 tumor shrunk to 3cm DMX 11/17 expanders placed Rads 33 doses + cisplatin 1/18 Cisplatin discontinued due to SEs Xeloda 4-10/2018 Exch surgery 11/18
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Feb 5, 2019 07:31PM Parrynd1 wrote:

My thoughts are my MO said the same thing to me during radiation for 2 lumps I felt, then my RO said the same thing, then my MO’s PA said the same thing...turns out those 3 breast cancer doctors were wrong and I didn’t find out till a brain tumor was discovered. I’m hoping this isn’t the norm and I accept my own responsibility. I just worry when I hear stories like this because I feel like I went through the same thing and am now in a spot that might have been prevented if I was more diligent and pushed for a biopsy of both lumps.

Dx 9/4/2016, IDC, Right, 4cm, Stage IIIA, Grade 3, ER-/PR-, HER2- Chemotherapy 11/29/2016 Other Chemotherapy 2/21/2017 AC Surgery 5/17/2017 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 6/14/2017 Carboplatin (Paraplatin), Taxol (paclitaxel) Radiation Therapy 10/4/2017 Whole-breast: Breast, Lymph nodes Dx 3/2018, IDC, Right, 5cm, Stage IV, metastasized to brain/bone/lungs/other, Grade 3, 1/1 nodes, ER-/PR-, HER2- Radiation Therapy 5/23/2018 External: Brain Chemotherapy 6/27/2018 Other Targeted Therapy 10/1/2018 Avastin (bevacizumab) Radiation Therapy 12/28/2018 Whole-breast: Breast Chemotherapy 12/30/2018 Halaven (eribulin) Dx 1/29/2019, IDC, <1cm, Stage IV, metastasized to other, Grade 3, 1/1 nodes, ER-/PR-, HER2- (FISH) Dx 2/5/2019, 3cm, Stage IV, metastasized to brain, Grade 3, ER-/PR-, HER2- (FISH) Surgery Chemotherapy Other
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Feb 5, 2019 07:58PM pesky904 wrote:

Whst most concerns me isthere's a lump exactly where the original tumor was. If it's what he said, "tissue that came apart during surgery and is now coming back together" why is it coming back together in the exact same place the cancer was

​dx 6/17 stage III TNBC 6cm tumor Taxol 7-8/17 tumor grew to 10cm AC 9-10/17 tumor shrunk to 3cm DMX 11/17 expanders placed Rads 33 doses + cisplatin 1/18 Cisplatin discontinued due to SEs Xeloda 4-10/2018 Exch surgery 11/18
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Feb 5, 2019 10:25PM Parrynd1 wrote:

Bodies are weird and amazing all at the same time. It could be that they messed with that area more because it had a tumor there. One of my recurrence tumors came back very close to the original site, but the other one was in a very different spot.

Dx 9/4/2016, IDC, Right, 4cm, Stage IIIA, Grade 3, ER-/PR-, HER2- Chemotherapy 11/29/2016 Other Chemotherapy 2/21/2017 AC Surgery 5/17/2017 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 6/14/2017 Carboplatin (Paraplatin), Taxol (paclitaxel) Radiation Therapy 10/4/2017 Whole-breast: Breast, Lymph nodes Dx 3/2018, IDC, Right, 5cm, Stage IV, metastasized to brain/bone/lungs/other, Grade 3, 1/1 nodes, ER-/PR-, HER2- Radiation Therapy 5/23/2018 External: Brain Chemotherapy 6/27/2018 Other Targeted Therapy 10/1/2018 Avastin (bevacizumab) Radiation Therapy 12/28/2018 Whole-breast: Breast Chemotherapy 12/30/2018 Halaven (eribulin) Dx 1/29/2019, IDC, <1cm, Stage IV, metastasized to other, Grade 3, 1/1 nodes, ER-/PR-, HER2- (FISH) Dx 2/5/2019, 3cm, Stage IV, metastasized to brain, Grade 3, ER-/PR-, HER2- (FISH) Surgery Chemotherapy Other
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Feb 5, 2019 11:08PM buttonsmachine wrote:

pesky, my recurrence tumors showed up 4-8 weeks after surgery - twice. Both times I was told it was fat necrosis, etc., but both times it was my cancer. The second time the cancer actually spread out around the tissue expander, and it was like many lentils under the skin, but softer. The cancer spanned about 7cm, it had formed tendrils and satellite lumps all around the tissue expander.

I too had a very aggressive and fast growing cancer, and my gut told me something was wrong, even when my doctor said otherwise. I actually went to a totally new surgeon for a punch biopsy after my original surgeon declined to do one. I got three punch biopsies, and they were all cancer.

Anyway, that was just my experience, and I hope yours is better. But I urge you to get a biopsy. I'm hoping the best for you.

Initial diagnosis at 32 years old. Chest wall resection 18 months later due to skin metastasis, probably from needle seeding during initial biopsy. Skin graft from right thigh! Dx 8/2016, IDC, Right, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 9/30/2016 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 10/31/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/31/2017 Whole-breast Hormonal Therapy 4/30/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 9/2017, IDC, Right, Grade 3, 2/5 nodes, ER+/PR+, HER2- Surgery 10/31/2017 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 12/26/2017 AC Dx 1/2018, IDC, Right, Grade 3, 0/5 nodes, ER+/PR+, HER2- Surgery 4/30/2018 Lymph node removal: Right; Mastectomy Radiation Therapy 5/9/2018 External: Lymph nodes, Chest wall Hormonal Therapy 6/30/2018 Zoladex (goserelin) Chemotherapy 6/30/2018 Xeloda (capecitabine) Hormonal Therapy 1/14/2019 Aromasin (exemestane)
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Feb 6, 2019 09:58AM pesky904 wrote:

Ugh. This is so frustrating, the NOT knowing. My PS said radiation causes so many issues and he feels this is due to the fact that the breast had radiation last year. (My radiation treatment ended March 1, 2018. I had tissue expanders in during radiation and did feel some large firm lumps then, but it felt different and I never even questioned that it was scar tissue.)

Immediately after my exchange surgery at the very end of November 2018, I felt no lumps whatsoever. The area was softer and my surgeon said to expect the right side to become firmer because it had radiation. And the right side has become firmer.

But the lump I found around New Years was tiny, a few millimeters, and couldn't even be felt unless I pressed on the breast. Now it's larger and can be felt just by lightly touching the area. And it's in the same spot as my original tumor. Again, my surgeon feels it's just "bits of tissue that became separated during surgery and are now coming back together." I can't help thinking, really? These bits of tissue are coming back together in exactly the same place my original cancerous tumor was? And why is it getting bigger?

And then like a week after I had an ultrasound and MRI that showed nothing, I get the lump in my lower armpit.

I asked the surgeon if it's possible there was some breast tissue left in the axilla because I have read that it's very difficult to remove all the tissue from that area during a mastectomy. The surgeon said that's not true, my BS is extremely good and likely got all of the tissue.

I said if there's no breast tissue left, then what are these lumps made out of. He said there's still cells. I mean, what's the difference?

There is also now swelling over the ribs next to the lump where my original tumor was.

My tumor markers 3 weeks ago were normal, but that was expected because they weren't elevated even in the beginning when I had a 6cm tumor. My alkaline phosphatase is elevated and has been steadily rising. It wasn't elevated before diagnosis or all during chemo (it was around 60). Now that treatment is over, it keeps going up a little bit every time we test it.

Oh, and the real kicker: the left (prophylactic mastectomy) side has dropped and now even though I had a double mastectomy and was told over and over how I'd have firm, perky "breasts" from now on, I have to wear a bra every day now to support the drooping, misshapen left breast.

​dx 6/17 stage III TNBC 6cm tumor Taxol 7-8/17 tumor grew to 10cm AC 9-10/17 tumor shrunk to 3cm DMX 11/17 expanders placed Rads 33 doses + cisplatin 1/18 Cisplatin discontinued due to SEs Xeloda 4-10/2018 Exch surgery 11/18
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Feb 8, 2019 02:50PM pesky904 wrote:

Update: Saw the oncologist today - well, I saw her nurse. She agreed the lump in the spot where my original cancer was is rock solid and definitely has grown since I was originally seen on January 9. She wasn't concerned at all about softer the armpit lump. She thought the lump in the original spot actually felt like it was on the rib.

She sent me for Xrays today and scheduled a bone scan and ultrasound for next Weds. I just got a message that "no fractures or bony abnormalities were seen" on the Xray of my ribs.

So I don't know how sensitive Xrays are and if this would have been picked up since it's sitting basically right between my rib and rim of the implant in the lower outer quadrant of the breast. If there was nothing seen on the Xray, does anyone think the bone scan will detect anything either?

​dx 6/17 stage III TNBC 6cm tumor Taxol 7-8/17 tumor grew to 10cm AC 9-10/17 tumor shrunk to 3cm DMX 11/17 expanders placed Rads 33 doses + cisplatin 1/18 Cisplatin discontinued due to SEs Xeloda 4-10/2018 Exch surgery 11/18
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Feb 8, 2019 05:16PM Parrynd1 wrote:

Glad someone is finally seeing that yeah your not crazy and maybe it should be investigated more. Props to you for also continuing to push this issue. I was curious about the Xray and bone scan question so from what I read a bone scan will pick up on more than an X-ray (stress fracture or infection) so I can imagine it’s better at detecting cancer in the bones. I’m still surprised no biopsy of the lumps yet...that will do more than imaging. Imaging just says yep something is there and even then it’s not always reliable at detection. I guess it’s another hoop to jump through to get to a real diagnosis of those mystery lumps

Dx 9/4/2016, IDC, Right, 4cm, Stage IIIA, Grade 3, ER-/PR-, HER2- Chemotherapy 11/29/2016 Other Chemotherapy 2/21/2017 AC Surgery 5/17/2017 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 6/14/2017 Carboplatin (Paraplatin), Taxol (paclitaxel) Radiation Therapy 10/4/2017 Whole-breast: Breast, Lymph nodes Dx 3/2018, IDC, Right, 5cm, Stage IV, metastasized to brain/bone/lungs/other, Grade 3, 1/1 nodes, ER-/PR-, HER2- Radiation Therapy 5/23/2018 External: Brain Chemotherapy 6/27/2018 Other Targeted Therapy 10/1/2018 Avastin (bevacizumab) Radiation Therapy 12/28/2018 Whole-breast: Breast Chemotherapy 12/30/2018 Halaven (eribulin) Dx 1/29/2019, IDC, <1cm, Stage IV, metastasized to other, Grade 3, 1/1 nodes, ER-/PR-, HER2- (FISH) Dx 2/5/2019, 3cm, Stage IV, metastasized to brain, Grade 3, ER-/PR-, HER2- (FISH) Surgery Chemotherapy Other
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Feb 8, 2019 05:43PM pesky904 wrote:

well I’m back to feeling crazy now. :( :( :(

I’m glad they ordered more imaging but I just read the plastic surgeon’s note from my visit on Tuesday. He wrote that he felt nothing except “mild irregularities” and some “indistinct fullness” in the area where I feel a very palpable lump. I’m SO irritated. These doctors keep telling me they feel the lump that I’m feeling but then their notes say they don’t.

The nurse today not only said she felt it, but she said it felt like it was on the rib. So now if her visit summary note says she didn’t feel a lump, I’m going to feel really insane. I even said to her today “am I crazy or is there a lump there” and she said I’m not crazy and she felt something there.

This is so frustrating. I guess that’s why no biopsy, because nobody really feels I have an actual lump.

My rib is really really sore right now. But X-ray saw nothing. If next week’s bone scan and ultrasound do t see anything either, I’m going to be extremely hesitatant to investigate any future changes.

​dx 6/17 stage III TNBC 6cm tumor Taxol 7-8/17 tumor grew to 10cm AC 9-10/17 tumor shrunk to 3cm DMX 11/17 expanders placed Rads 33 doses + cisplatin 1/18 Cisplatin discontinued due to SEs Xeloda 4-10/2018 Exch surgery 11/18
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Feb 8, 2019 07:05PM pesky904 wrote:

okay, well the nurse’s note says “small palpable lesion on right breast between rib and implant.”

So at least she is saying there is *something* there. Although she also noted that the BS and PS feel it is post surgical changes.

​dx 6/17 stage III TNBC 6cm tumor Taxol 7-8/17 tumor grew to 10cm AC 9-10/17 tumor shrunk to 3cm DMX 11/17 expanders placed Rads 33 doses + cisplatin 1/18 Cisplatin discontinued due to SEs Xeloda 4-10/2018 Exch surgery 11/18
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Feb 9, 2019 05:16PM KBeee wrote:

I would not quit pursuing it until they have a biopsy. They know as well as you and I do that the only 100% way to know is a biopsy, and you can ask them if they're 100% sure, and I'm sure no doctor would say that without a biopsy.

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)
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Feb 9, 2019 06:10PM - edited Feb 9, 2019 06:18PM by buttonsmachine

Pesky, an MRI with contrast is also a good way of looking at the chest wall. That was the only thing that detected the extent of my recurrence, and that can be useful information. However, as KBeee said, a biopsy is the only way to be 100% certain of anything.

Also, you're not crazy. I got the same run around you did. Unfortunately, I think some Drs don't want it to be cancer just because they feel ill-equipped to deal with more complex cases. My original Drs were in over their heads and I think that's partly why they dragged their feet. I found new doctors. Unfortunately, at the end of the day WE are the ones who have to live with consequences of whatever happens. Don't ever feel bad about about demanding answers.

Hugs. I hope you get some answers soon.

Initial diagnosis at 32 years old. Chest wall resection 18 months later due to skin metastasis, probably from needle seeding during initial biopsy. Skin graft from right thigh! Dx 8/2016, IDC, Right, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 9/30/2016 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 10/31/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/31/2017 Whole-breast Hormonal Therapy 4/30/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 9/2017, IDC, Right, Grade 3, 2/5 nodes, ER+/PR+, HER2- Surgery 10/31/2017 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 12/26/2017 AC Dx 1/2018, IDC, Right, Grade 3, 0/5 nodes, ER+/PR+, HER2- Surgery 4/30/2018 Lymph node removal: Right; Mastectomy Radiation Therapy 5/9/2018 External: Lymph nodes, Chest wall Hormonal Therapy 6/30/2018 Zoladex (goserelin) Chemotherapy 6/30/2018 Xeloda (capecitabine) Hormonal Therapy 1/14/2019 Aromasin (exemestane)
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Feb 10, 2019 08:54AM pesky904 wrote:

Thanks for your replies! What concerns me is that I feel the lump and they keep telling me to my face that they feel it, but then their notes say otherwise. Why can’t anyone just tell me exactly what it is that I’m feeling? I suspect it’s because they don’t exactly know. And yet they seem to be okay with me having some “irregularity” at the site of my original cancer and not being able to see it on imaging or know what it is.

I’m so nervous that even though it feels bigger, they still won’t see it on the ultrasound this coming Wednesday. And then if the bone scan is also negative, I’ll literally just be waiting until my next follow up in April.

What kinds of things can be seen on a bone scan other than metastasis? I have several areas that hurt at night for some reason: a tiny spot on my left rib under the implant on my non-cancer side, my right ulna and my left tibia. They ache really bad at night (or maybe I just notice it more at night). Will other causes of bone pain/bone weakness show up on a bone scan?

​dx 6/17 stage III TNBC 6cm tumor Taxol 7-8/17 tumor grew to 10cm AC 9-10/17 tumor shrunk to 3cm DMX 11/17 expanders placed Rads 33 doses + cisplatin 1/18 Cisplatin discontinued due to SEs Xeloda 4-10/2018 Exch surgery 11/18
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Feb 10, 2019 02:01PM Parrynd1 wrote:

Can you get a second opinion on the lump or just go for a biopsy at an imaging place? Have you straight up asked your MO why they won’t do a biopsy if everyone feels it!?

Dx 9/4/2016, IDC, Right, 4cm, Stage IIIA, Grade 3, ER-/PR-, HER2- Chemotherapy 11/29/2016 Other Chemotherapy 2/21/2017 AC Surgery 5/17/2017 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 6/14/2017 Carboplatin (Paraplatin), Taxol (paclitaxel) Radiation Therapy 10/4/2017 Whole-breast: Breast, Lymph nodes Dx 3/2018, IDC, Right, 5cm, Stage IV, metastasized to brain/bone/lungs/other, Grade 3, 1/1 nodes, ER-/PR-, HER2- Radiation Therapy 5/23/2018 External: Brain Chemotherapy 6/27/2018 Other Targeted Therapy 10/1/2018 Avastin (bevacizumab) Radiation Therapy 12/28/2018 Whole-breast: Breast Chemotherapy 12/30/2018 Halaven (eribulin) Dx 1/29/2019, IDC, <1cm, Stage IV, metastasized to other, Grade 3, 1/1 nodes, ER-/PR-, HER2- (FISH) Dx 2/5/2019, 3cm, Stage IV, metastasized to brain, Grade 3, ER-/PR-, HER2- (FISH) Surgery Chemotherapy Other
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Feb 10, 2019 03:58PM pesky904 wrote:

I think the concern was that they can’t see the lump on imaging and it is small and so close to the implant.

What I don’t get is why they keep reassuring me that they feel this lump and then the surgeon’s notes said “mild irregularities” and didn’t even call it a lump.

Fat necrosis, scar tissue, all that should be seen on imaging. I don’t understand why nothing was seen. If they don’t see anything on the new ultrasound on Wednesday I’m going to really feel insane

​dx 6/17 stage III TNBC 6cm tumor Taxol 7-8/17 tumor grew to 10cm AC 9-10/17 tumor shrunk to 3cm DMX 11/17 expanders placed Rads 33 doses + cisplatin 1/18 Cisplatin discontinued due to SEs Xeloda 4-10/2018 Exch surgery 11/18
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Feb 10, 2019 05:40PM pesky904 wrote:

Another thing I’m curious about, I suddenly have an enormous amount of small bruises on my body. I’m not on any meds of supplements whatsoever right now. I’ve been done with treatment since early November. I know my body is working to get back to “normal.” Is a lot of bruising something anyone else dealt with

​dx 6/17 stage III TNBC 6cm tumor Taxol 7-8/17 tumor grew to 10cm AC 9-10/17 tumor shrunk to 3cm DMX 11/17 expanders placed Rads 33 doses + cisplatin 1/18 Cisplatin discontinued due to SEs Xeloda 4-10/2018 Exch surgery 11/18
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Feb 10, 2019 05:42PM santabarbarian wrote:

No, don't feel insane; feel pissed.... and get proactive. Ask why they have not ordered a biopsy. Ask if they can be certain this is NOT cancer. Ask if they can put into writing why they are not biopsy-ing the lump. Be a total PITA.

Though I could write a 10 page rant on how frustrating and exhausting it is to be your own advocate through chemo, surgery, etc, you the onlyYOU. Yours is the life everyone is trying to save.... they have 35 cases, you have ONE case. YOU.

When I was on the cusp of lumpectomy the surgeon casually says, "you are right at the line for me taking all the level one and level two axillary nodes." I say, "but my imaging is consistent with pCR. Is that absolutely necessary? Can someone who presented w 3 nodes and with no pCR possibly be in a better position thn someone who presented w 4 nodes and does have a pCR? Can you take fewer nodes and go back in for the cleanup IF there is cancer?" She said, "Yes, sure-- if you consent to a second surgery if we find live cancer, then I'll take 4-5 nodes and go back for more if need be."

I have to believe 9/10 women who saw this surgeon and presented like me would have lost all their nodes. I only forfeited 4 nodes -- and I had a pCR.

My point is, BE VIGILANT and be the squeaky wheel and get what you need and want!

I saw on another threat that Planned Parenthood can arrange imaging and biopsies. That might be a resource, or any other second opinion, if your team refuses to biopsy you. Maybe from a TNBC specialist or teaching hospital??

pCR after neoadjuvant chemo w/ integrative practices Dx 7/13/2018, IDC, Left, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (FISH) Chemotherapy 8/12/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy: Left Radiation Therapy 2/10/2019 Whole-breast: Breast, Lymph nodes
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Feb 10, 2019 05:49PM pesky904 wrote:

That’s the reallyfrustrating part. I actually AM at a teaching hospital. And one of the premier cancer centers in the country.

​dx 6/17 stage III TNBC 6cm tumor Taxol 7-8/17 tumor grew to 10cm AC 9-10/17 tumor shrunk to 3cm DMX 11/17 expanders placed Rads 33 doses + cisplatin 1/18 Cisplatin discontinued due to SEs Xeloda 4-10/2018 Exch surgery 11/18
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Feb 10, 2019 11:36PM Parrynd1 wrote:

Pesky, so am I and mine were still missed. I know it’s frustrating. Hang in there and don’t stop. Till you know it’s nothing, it’s something

Dx 9/4/2016, IDC, Right, 4cm, Stage IIIA, Grade 3, ER-/PR-, HER2- Chemotherapy 11/29/2016 Other Chemotherapy 2/21/2017 AC Surgery 5/17/2017 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 6/14/2017 Carboplatin (Paraplatin), Taxol (paclitaxel) Radiation Therapy 10/4/2017 Whole-breast: Breast, Lymph nodes Dx 3/2018, IDC, Right, 5cm, Stage IV, metastasized to brain/bone/lungs/other, Grade 3, 1/1 nodes, ER-/PR-, HER2- Radiation Therapy 5/23/2018 External: Brain Chemotherapy 6/27/2018 Other Targeted Therapy 10/1/2018 Avastin (bevacizumab) Radiation Therapy 12/28/2018 Whole-breast: Breast Chemotherapy 12/30/2018 Halaven (eribulin) Dx 1/29/2019, IDC, <1cm, Stage IV, metastasized to other, Grade 3, 1/1 nodes, ER-/PR-, HER2- (FISH) Dx 2/5/2019, 3cm, Stage IV, metastasized to brain, Grade 3, ER-/PR-, HER2- (FISH) Surgery Chemotherapy Other

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