u/BeginningtheRace1996

I thought I had an appointment today to get my results but, it's not till the 17th. My pathology results after my double mascectomy have been here since Thursday and I couldn't bring myself to look, I thought I'll just wait till my appt. I finally did and I'm devastated.

My chemo did nothing. The tumor shrank by half during chemo and all imaging up to a week before surgery showed no lymph node involvement. They only took two lymph nodes and both were positive. My tumor was at 100% cancer and back to its original size. Chemo did absolutely nothing and I was non responsive to immunotherapy which everyone was sure would work great since I was diagnosed with Lynch Syndrome with the breast cancer variant. The onc thinks that I got breast cancer in addition to Lynch, not because of Lynch, otherwise, he has no idea why it didn't respond. 4 weeks before I finished chemo I had a pet scan that showed the shrinkage and the uptake decreased by half and clear lymph nodes. It not only learned the chemo but has now become super aggressive. RCB 3.

Everyone keeps telling me to have hope, even the surgeon walked out and told my family the lymph nodes looked normal. Every time I have hope, it's completely dashed. All I can do since my surgery is cry. My oncologist who I got switched to when mine left UTSW doesn't know anything about Trodelvy. I asked my nurse navigator about switching doctors within the system and she said it has to go before the board. I've lost my job since I was diagnosed and my unemployment runs out in a month, the oncologist I chose left midway through treatment, I couldn't use the surgeon I picked because they expedited the surgery and she was out of town, I wasn't able to have a plastic surgeon in surgery because of it being expedited, now any revision won't be before a year because I'll have to have radiation. I won't be able to have the hysterectomy I had planned this year because of radiation and chemo so I'll have to repeat all the painful tests again for monitoring. Everyone was sure it hadn't spread and even that isn't true. It's bad news every time and I'm petrified. I don't know where to go from here.

Should I be asking for specific tests to run on the tumor? I asked my onc and he said they don't do any testing on it unless your stage 4.

I've always had an overwhelming feeling I would die in my 40's. I'm now 48 staring down a super aggressive, super smart, non responsive tumor and all my brain can go to is the dark places. I'm amazed by all of y'all who stay so positive because I'm not feeling any of it. Game changing immunotherapy didn't work. How am I suppose to have hope that the other treatments will?

Synoptic Checklist

Value

INVASIVE CARCINOMA OF THE BREAST: Resection INVASIVE CARCINOMA OF THE BREAST: RESECTION - All Specimens 8th Edition - Protocol posted: 6/19/2024 SPECIMEN Procedure: Total mastectomy Specimen Laterality: Left TUMOR Tumor Site: Upper outer quadrant Histologic Type: Invasive carcinoma of no special type (ductal) Histologic Grade (Nottingham Histologic Score): Glandular (Acinar) / Tubular Differentiation: Score 3 Nuclear Pleomorphism: Score 3 Mitotic Rate: Score 3 Overall Grade: Grade 3 (scores of 8 or 9) Tumor Size: Greatest dimension of largest invasive focus (Millimeters): 20 mm Tumor Focality: Single focus of invasive carcinoma Ductal Carcinoma In Situ (DCIS): Not identified Lobular Carcinoma In Situ (LCIS): Not identified Lymphatic and / or Vascular Invasion: Present : Extensive Dermal Lymphatic and / or Vascular Invasion: Not identified Microcalcifications: Not identified Treatment Effect in the Breast: No definite response to presurgical therapy in the invasive carcinoma Treatment Effect in the Lymph Nodes: No definite response to presurgical therapy in metastatic carcinoma Residual Cancer Burden (RCB) Parameters: Greatest Dimension of Primary Tumor Bed Area (Millimeters): 20 mm Second Greatest Dimension of Primary Tumor Bed Area (Millimeters): 18 mm Percentage of Overall Cancer Cellularity: 100 % Percentage of Cancer that is In Situ Disease: 0 % Number of Positive Lymph Nodes: 2 Diameter of Largest Nodal Metastasis (Millimeters): 5 mm Residual Cancer Burden Class: RCB-III MARGINS Margin Status for Invasive Carcinoma: All margins negative for invasive carcinoma Distance from Invasive Carcinoma to Closest Margin: Greater than: 10 mm REGIONAL LYMPH NODES Regional Lymph Node Status: : Tumor present in regional lymph node(s) Number of Lymph Nodes with Macrometastases: 2 Number of Lymph Nodes with Micrometastases: 0 Size of Largest Nodal Metastatic Deposit: 5 mm Extranodal Extension: Not identified Total Number of Lymph Nodes Examined (sentinel and non-sentinel): 2 Number of Sentinel Nodes Examined: 2 pTNM CLASSIFICATION (AJCC 8th Edition) Reporting of pT, pN, and (when applicable) pM categories is based on information available to the pathologist at the time the report is issued. As per the AJCC (Chapter 1, 8th Ed.) it is the managing physician's responsibility to establish the final pathologic stage based upon all pertinent information, including but potentially not limited to this pathology report. Modified Classification: y pT Category: pT1c pN Category: pN1a N Suffix: (sn)

I thought I had an appointment today to get my results but, it's not till the 17th. My pathology results after my double mascectomy have been here since Thursday and I couldn't bring myself to look, I thought I'll just wait till my appt. I finally did and I'm devastated.

My chemo did nothing. The tumor shrank by half during chemo and all imaging up to a week before surgery showed no lymph node involvement. They only took two lymph nodes and both were positive. My tumor was at 100% cancer and back to its original size. Chemo did absolutely nothing and I was non responsive to immunotherapy which everyone was sure would work great since I was diagnosed with Lynch Syndrome with the breast cancer variant. The onc thinks that I got breast cancer in addition to Lynch, not because of Lynch, otherwise, he has no idea why it didn't respond. 4 weeks before I finished chemo I had a pet scan that showed the shrinkage and the uptake decreased by half and clear lymph nodes. It not only learned the chemo but has now become super aggressive. RCB 3.

Everyone keeps telling me to have hope, even the surgeon walked out and told my family the lymph nodes looked normal. Every time I have hope, it's completely dashed. All I can do since my surgery is cry. My oncologist who I got switched to when mine left UTSW doesn't know anything about Trodelvy. I asked my nurse navigator about switching doctors within the system and she said it has to go before the board. I've lost my job since I was diagnosed and my unemployment runs out in a month, the oncologist I chose left midway through treatment, I couldn't use the surgeon I picked because they expedited the surgery and she was out of town, I wasn't able to have a plastic surgeon in surgery because of it being expedited, now any revision won't be before a year because I'll have to have radiation. I won't be able to have the hysterectomy I had planned this year because of radiation and chemo so I'll have to repeat all the painful tests again for monitoring. Everyone was sure it hadn't spread and even that isn't true. It's bad news every time and I'm petrified. I don't know where to go from here.

Should I be asking for specific tests to run on the tumor? I asked my onc and he said they don't do any testing on it unless your stage 4.

I've always had an overwhelming feeling I would die in my 40's. I'm now 48 staring down a super aggressive, super smart, non responsive tumor and all my brain can go to is the dark places. I'm amazed by all of y'all who stay so positive because I'm not feeling any of it. Game changing immunotherapy didn't work. How am I suppose to have hope that the other treatments will?

Synoptic Checklist

Value

INVASIVE CARCINOMA OF THE BREAST: Resection INVASIVE CARCINOMA OF THE BREAST: RESECTION - All Specimens 8th Edition - Protocol posted: 6/19/2024 SPECIMEN Procedure: Total mastectomy Specimen Laterality: Left TUMOR Tumor Site: Upper outer quadrant Histologic Type: Invasive carcinoma of no special type (ductal) Histologic Grade (Nottingham Histologic Score): Glandular (Acinar) / Tubular Differentiation: Score 3 Nuclear Pleomorphism: Score 3 Mitotic Rate: Score 3 Overall Grade: Grade 3 (scores of 8 or 9) Tumor Size: Greatest dimension of largest invasive focus (Millimeters): 20 mm Tumor Focality: Single focus of invasive carcinoma Ductal Carcinoma In Situ (DCIS): Not identified Lobular Carcinoma In Situ (LCIS): Not identified Lymphatic and / or Vascular Invasion: Present : Extensive Dermal Lymphatic and / or Vascular Invasion: Not identified Microcalcifications: Not identified Treatment Effect in the Breast: No definite response to presurgical therapy in the invasive carcinoma Treatment Effect in the Lymph Nodes: No definite response to presurgical therapy in metastatic carcinoma Residual Cancer Burden (RCB) Parameters: Greatest Dimension of Primary Tumor Bed Area (Millimeters): 20 mm Second Greatest Dimension of Primary Tumor Bed Area (Millimeters): 18 mm Percentage of Overall Cancer Cellularity: 100 % Percentage of Cancer that is In Situ Disease: 0 % Number of Positive Lymph Nodes: 2 Diameter of Largest Nodal Metastasis (Millimeters): 5 mm Residual Cancer Burden Class: RCB-III MARGINS Margin Status for Invasive Carcinoma: All margins negative for invasive carcinoma Distance from Invasive Carcinoma to Closest Margin: Greater than: 10 mm REGIONAL LYMPH NODES Regional Lymph Node Status: : Tumor present in regional lymph node(s) Number of Lymph Nodes with Macrometastases: 2 Number of Lymph Nodes with Micrometastases: 0 Size of Largest Nodal Metastatic Deposit: 5 mm Extranodal Extension: Not identified Total Number of Lymph Nodes Examined (sentinel and non-sentinel): 2 Number of Sentinel Nodes Examined: 2 pTNM CLASSIFICATION (AJCC 8th Edition) Reporting of pT, pN, and (when applicable) pM categories is based on information available to the pathologist at the time the report is issued. As per the AJCC (Chapter 1, 8th Ed.) it is the managing physician's responsibility to establish the final pathologic stage based upon all pertinent information, including but potentially not limited to this pathology report. Modified Classification: y pT Category: pT1c pN Category: pN1a N Suffix: (sn)

I feel so defeated. For anyone who saw my post from yesterday about my Ki number and re-biopsy, I got confirmation this morning that my tumor, which had originally shrunk by half, is back to its original size within 4 weeks after finishing chemo. The oncologist wants surgery asap. Apparently while chemo worked initially, the tumor figured out how to outsmart it. And even though I have Lynch Syndrome which is supposed to be very reactive to immunotherapy, mine isn't which he said was highly unusual and the immunotherapy didn't work either. His only words were... I think we can still salvage this. Which isn't very reassuring.

I switched oncologists and cancer centers specifically after diagnosis so I could get immunotherapy. Then my new oncologist who I adored left a month later and I got assigned this guy. The surgeon I picked, who I love and is the only calming person to me, is out of town till the 18th of August and now I have to meet a random stranger surgeon this morning and I don't think I'll get the plastic surgeon I picked either. Everything has gone to shit. My husband keeps telling me to stay hopeful but everything I've hoped for has been dashed. The only positive right now is so far all the scans are showing my lymph nodes are clear but I know that isn't a guarantee and I don't want to count on that either. I'm so mad, I'm so scared and frankly I'm so jealous. I'm 48. I've lived an ok life, but gave up all my dreams to take care of everyone else. I've literally given up everything, why is the universe taking this from me too?

My surgery was supposed to be in 3 weeks and now I'm looking at possibly a few days. I'm not prepared in any way. I thought I had time. I guess I just need to scream into the void. I'm not feeling any hope right now. This feels like a nightmare.

I'm so scared. I was originally diagnosed with stage 1b triple negative, grade 3, ki 70 in December. I finished chemo on 06/29 and about 4 weeks prior, I had pet scan to check on a different issue. That scan showed it had shrunk by about half and the uptake decreased from 16 to 7. The oncologist was hopeful and said I could still reach pcr.

About a week after I finished chemo, the tumor area started hurting and eventually felt bigger. I went back and had an ultrasound and mammogram that confirmed it had increased in size. The surgeon wanted it re-biosied and a new MRI. I haven't gotten the results of the MRI yet but the biopsy came back as triple negative and the ki actually went up to 80. I'm so screwed. The last 6 months have been for nothing. I know the prognosis won't be good if the aggressiveness has actually increased and it grew after chemo. I'm devastated and so, so scared. And I'm angry. Angry I don't get to be one of the lucky ones. Angry that my tumor is evading treatment. Angry that this may very likely kill me. It's all so unfair.

Is there anyone out there that has had an increase in their ki number and is still alive to tell about it?

I'm so scared. I was originally diagnosed with stage 1b triple negative, grade 3, ki 70 in December. I finished chemo on 06/29 and about 4 weeks prior, I had pet scan to check on a different issue. That scan showed it had shrunk by about half and the uptake decreased from 16 to 7. The oncologist was hopeful and said I could still reach pcr.

About a week after I finished chemo, the tumor area started hurting and eventually felt bigger. I went back and had an ultrasound and mammogram that confirmed it had increased in size. The surgeon wanted it re-biosied and a new MRI. I haven't gotten the results of the MRI yet but the biopsy came back as triple negative and the ki actually went up to 80. I'm so screwed. The last 6 months have been for nothing. I know the prognosis won't be good if the aggressiveness has actually increased and it grew after chemo. I'm devastated and so, so scared. And I'm angry. Angry I don't get to be one of the lucky ones. Angry that my tumor is evading treatment. Angry that this may very likely kill me. It's all so unfair.

Is there anyone out there that has had an increase in their ki number and is still alive to tell about it?

I'm trying desperately not to spiral this morning but it's not working .

I finally finished my chemo on 6/29 with a few delays and I missed the first two infusions of immunotherapy due to switching oncologists and a change in treatment plan. My tumor never went away but it did soften some and became a bit harder to find. The week I finished chemo though, it started to hurt, like zaps and stings. It also became extremely tender, feeling like a really terrible bruise and the tumor has become extremely hard. Before, I could rub my hand over the area and not immediately feel it and now it's very noticeable.

I saw a new physician assistant yesterday, my normal one was out due to a family emergency, and she said she wasn't overly concerned but was ordering an ultrasound to double check. I went down a rabbit hole last night on this thread and everyone I could find with similar symptoms said their chemo didn't work and when I looked, most became stage 4. I'm freaking out. I had a pet scan to monitor a different issue with 4 chemos left and the tumor had shrunk but still had an uptake of just over 7. The uptake was originally 16. They said that was good even though it was still very much active.

I know I won't know anything until the ultrasound and ultimately surgery but my surgery isn't for another month, almost 8 weeks after I finished chemo. Is there anyone whose tumor got harder after chemo from necrosis or encapsulation, etc. who still achieved pcr or had a good response? The fact that it has gotten so hard and painful and that I can now feel it so much easier is freaking me out. I feel so let down and like such a failure that mine hasn't disappeared like so many others on here.