u/Just_Plum_3181

Hi everyone, does anyone know when there's extensive tumor spread in the chest wall, can we still massage or do chest training? I heard it would trigger more metabolic activities in that area, hence the tumors can grow more. I have a quite big scar and a flap on that cheast, so i feel pain sometimes. It confuses me whether its due to the muscle got invaded or the surgery. Until now my chest is warmer than other parts of my body.

I received the bad news yesterday. My MRI result is showing extensive tumor recurrence in fetty tissues, pec major muscle, soft tissues alongside breastbone and around ribs, plus suspected multiple cancer deposits on the pleural. So, I guess I am on stage 4 now. I haven't met my oncologist yet, but she has been informed. I dont know what to do. The muscle is constantly hurting, so I took the pain killers. Its been more than 3 years since I have been diagnosed with a rare subtype TNBC. With this upgrade, I think I am doomed.

I am very sad to myself and to my husband, who is so loving and caring since the day one I got cancer. I truly wish to live longer with him.

I have a very extremely rare breast cancer and one of the molecular results are having NF1 mutation. I just realized that the genetic testing I did only covered HBOC panel/breast and ovarian cancer genes, so NF1 is not included. Therefore, I am wondering if it's necessary to get a genetic test for NF1 as well. Does anyone know about it?

My husband's father crossed the line many times. He told me such as:

1. I am not doing enough sports, thats why the tumors keep coming back

2. I only have 2-3 years to live (based on his research with AI)

3. Cancer comes from inside the mind. But, because I am not reflective enough, it comes back

4. Losing a breast is to give me a lesson

5. I tried many things but never deep enough, or never believe in one specific things.

Having cancer already sucks, but these kind of people, who have zero empathy (but still use the word "because I care and support you, thats why i am telling you the truth") and give me a lot of traumas.

Update: thank you very much for all the support on this post. Usually I don't venting on people. But, I needed to let it out. My husband and I will work on our relationship after this incident. In the meantime I am focusing on my health (physical and emotional). I wish you all the best ❣️

The cancer infiltrates the pectoralis major muscle and the recommendation is to remove it. I've been on the surgery twice in two months, thats why i am not keen of having another surgery. Instead I want to start the systemic therapy like Capicitabine and radiotherapy. But, my surgeon told me the surgery will me more complex after radiation.

I thought removing this muscle is rarely to be performed these days and radiation should be enough. Any thoughts or similar experience? What kind of reduction I would have afterwards?

My partner (35M) is an amazing man. He was with me (33F) on the day one of my cancer journey. We have been together for 3 years and I could not more happier than with other men, despite a huge challenge in my life.

But, my cancer progression has been very bad lately. I had relapses twice and it is an extremely rare type. His father followed a holistic approach. Since the beginning he actively gave me many advices holistically. Sometimes his opinion sounded really harsh, but i know its coming from a good place.

Unfortunately, his advices got into my limit. Firstly, I was told that my time could be only 2-3 years. I was sad, but also it can be true, as nobody knows how to cure me. Then the next day he told me the alternative I tried is not gonna work and only sell a hope (I am still in active treatment at the hospital, but I started to find out an alternative due to his advice too).

The worst is when he said he saw me running only 15 mins a while ago, and no wonder the tumor came back. I tried to defend myself that I tried to be active, not just running, but biking, swimming etc. he did not believe it and said that I never done deeper enough, just like the sport. In the end I could not hold my tears and said "it's not my fault". But, his opinion was strong to say its kinda/partly my fault.

Where was my partner? His sitting next to me and hold my hand. When I cried all the day, he was holding me in silent.

So, I decided to leave his father's house. The father told me if I did not stay as he wanted to explain more what he meant, our relationship would be over and he wont come to our wedding. But, I still left, I could not take it anymore...

Whenever I see or engage with my partner now, I remember that moment. I am still in extremely pain. I questioned all what I have done. I dont want to have this cancer and nobody does.

And our wedding is just another week to go. I dont know how to repair this relationship. I loved him, but seeing him said nothing next to me when I was trembling, makes me afraid maybe he would turn to be like his dad. But, maybe I would not live long enough to see him like that.

TL;DR: one week before our wedding, I got an argument with his father that makes me extremely in pain and no longer feel the same towards my partner.

I received bad news (again), but this time I could not stop thinking about it. The timing makes even worse. I will be getting married on the 8th of August.

With regards to my diagnosis, i have a long journey until now. TNBC with the rare subtype (Acinic cell carcinoma). I had new adjuvant therapy followed by lumpectomy and radiotherapy.

I got a local reccurance (multicentric)1.5 years later. Then I had an unilateral mastectomy. Although i was recommended to take Capicitabine/xeloda, I made a pause for about 5 months. Then the tumor came back.

They took out the implant and most the skin. Furthermore, I had a lat flap, which causes a lot of pain until now. That was about 1.5 month ago. About 2 weeks ago i had another surgery to add more margins. There was a tumor found too close on the edge. So they had to do re-resection + shave the pec muscle.

Unfortunately today i received the pathology report+the tumor board. This time the margin on the muscle is positive with the microscopic cancer cells. The worst things are it showed it was inflarated to the nerve and lymph inside the muscle (which is the evidence that the cancer is more aggressive).

recommendations:

\- complete pec muscle removal

\- chemotherapy (paxitel/dexorubi)

\- radiotherapy with hypothermia

\- another molecular testing (RNA). I got DNA test already, no BRACA mutation both in the blood nor in the tumor.

I am completely shattered. Its like i am going back to the circle, but in the worse physical state as i am still recovering from the two last surgeries. If i can bagging to the doctors, please dont take my muscles more...

Any suggestions...?

I received bad news (again), but this time I could not stop thinking about it. The timing makes even worse. I will be getting married on the 8th of August.

With regards to my diagnosis, i have a long journey until now. TNBC with the rare subtype (Acinic cell carcinoma). I had new adjuvant therapy followed by lumpectomy and radiotherapy.

I got a local reccurance (multicentric)1.5 years later. Then I had an unilateral mastectomy. Although i was recommended to take Capicitabine/xeloda, I made a pause for about 5 months. Then the tumor came back.

They took out the implant and most the skin. Furthermore, I had a lat flap, which causes a lot of pain until now. That was about 1.5 month ago. About 2 weeks ago i had another surgery to add more margins. There was a tumor found too close on the edge. So they had to do re-resection + shave the pec muscle.

Unfortunately today i received the pathology report+the tumor board. This time the margin on the muscle is positive with the microscopic cancer cells. The worst things are it showed it was inflarated to the nerve and lymph inside the muscle (which is the evidence that the cancer is more aggressive).

recommendations:

- complete pec muscle removal

- chemotherapy (paxitel/dexorubi)

- radiotherapy with hypothermia

- another molecular testing (RNA). I got DNA test already, no BRACA mutation both in the blood nor in the tumor.

I am completely shattered. Its like i am going back to the circle, but in the worse physical state as i am still recovering from the two last surgeries. If i can bagging to the doctors, please dont take my muscles more...

Any suggestions...?

I know that what has happened can't be undone. I've also tried to rationalize my surgeon's decision to use a portion of my latissimus dorsi muscle and skin to patch the defect after my modified radical mastectomy. I keep reminding myself that the latissimus dorsi flap is a relatively simple procedure with a high success rate, and it allowed my surgeon to remove the multicentric tumors in my breast.

However, I recently came across some opinions online saying that the latissimus dorsi flap is one of the worst options and that it's no longer the gold standard for autologous breast reconstruction. What scares me the most are the potential long-term issues people mention, such as shoulder tightness, reduced mobility, subclinical scoliosis, and the possibility of the muscle pulling back toward its original position.

So, if anyone has had this flap and has had a good long-term experience, I would really appreciate hearing your story. Once I've healed, I'm ready to invest a lot of time in yoga or Pilates to help minimize any side effects. A little reassurance and affirmation would also mean a lot to me.

I finally received the the DNA test results based on whole genome sequence. Sadly no available gene or targeted therapy that suits my molecular profile. The doctor mentioned that if i get relapsed/metastatic, she can try to organize RNA test on the biopsy/surgery. It made me so frustrated when she said like that, as I have had 3 tumor surgeries (2x reccurance). I dont know anymore. Should i go outside of this country (currently based in Germany) and start looking for privately paid treatment?

Hi all! I received the patho report from my second recurrent surgery. The backpain was worth it, that what the surgeon said. I had flat closure (radical mastectomy) and lat dorsi flap due to not enough skin.

So, the report says 10 cm area of tumors, Ki67 25% and TNBC. One tumor found in the implant capsule and one tumor is too close to the edge. They are re-checking and will confirm if its acinic cell carcinoma subtype.

Not the best news for sure. I think they will give me two options, re-excision or radiation. But, i feel reluctant to get radiation on the flap skin. I received adjuvant radiotherapy 3 years ago and the tumor came back less than 2 years..

Let me know if any thoughts and advice. I'd highly appreciate it.

My doctor told me that the recommendation of the surgery (after a lumpectomy and a mastectomy with skin nipple sparing) is a radical mastectomy. But, when i asked does it mean removing the muscles and she said no. So, i guess its a flat closure. Still i am not ready for that.

The tumor recurrence is on the upper part of the breast, even near the surgery scar which is next to the axilla. i wish that lumpectomy is enough...

I was diagnosed with TNBC 3 years ago. I got treated with neo adjuvant, a lumpectomy and radiotherapy. Almost 2 years ago I got a reccurance. Due to having a rare cancer type, I moved to the research hospital. Their opinion or the wording is more convinced that my reccurance was the "residuals" tumors. My after-care oncologist, on the other hand, believes that it was a new tumor.

Moving forward, I had a mastectomy 5 months ago. Unfortunately, my tumor came back. The doctor in the hospital told me that it must be a new tumor than the residuals as she is convinced they did a great job on removing my breast tissues.

I guess, no one wanted to be blamed and perhaps it does not matter much whether its new tumors or residuals, cancer is cancer.

What's your opinion?

Hi all, does anyone have experience on getting a relapse after mastectomy in the same breast? Did you get recommended to have skins and nipple removals?

I am pretty much not ready for this....

My oncologist tried to call me today and I missed only 2-3 mins. She then scheduled me an appointment to discuss the pathology result tomorrow. It cant be good news, I assume. My mastectomy was quite recent, and now the tumors returned on the same breast close to the scars and skins. I will have my 3rd year C anniversary this Sunday, but having cancer diagnosis on the 3rd time is f*cking tiring. What is my pragnosis?