Genetic testing...does anyone have the CHEK2 gene mutation?

Hi @deborahmontana
I had bilateral total mastectomies (not radical thankfully, not skin or nipple sparing as I did not opt for reconstruction). After my mastectomies, I only had breast MRIs and chest ultrasounds. If I said mastectomy somewhere, that was in error. I was trying to say your MRI could see things your mammogram didn't and that may explain why your mammo was normal and the MRI was not.

I didn't have oncotype testing either time because I can't have chemo with my pre-x neuropathy and my oncologist doesn't think it would work for my recurrent cancer anyway. I can tell you I'm ER+ PR+ Her2- and have a Ki-67 of 50% this time (anything 20+ is aggressive) so it’s very aggressive now. The first time it was about 17%.

Hope you don't think I was indicating you are litigious. I was just saying because I'm not, I don't spend too much time pursuing the mistakes although I have had plenty of medical mistakes happen to me and my family has had them too. I agree they are very upsetting, but I only have enough energy to focus on where I’m at now. Not only do I wonder if there was a mistake during my mastectomy that spread the cancer, but on my recurrent chest tumor there was a positive margin after surgery. The surgeon only needed to take another mm or 2 so why cut it so close?

There was also a mistake during my radiation treatment and the first 4 boost treatments (28 regular and 9 boost treatments altogether) were not where the tumor was and I had to battle to get it corrected. The mistake happened because my surgeon opened up my old incision and reached to the new tumor rather than creating a new scar so the radiologist assumed the tumor bed was along the incision line as it normally is. I wonder if reaching to the new tumor also contributed to leaving a positive margin?

The cosmetic surgeon also made a mistake by removing my surgical tape too soon and declined to give me the special tape to prevent keloid scarring even though I had a history of keloids. Sure enough, I got excruciatingly painful keloid scars and had 125 kenalog injections in them over 2.5 years to flatten them out and stop the hourly stabbing/slicing pains that also woke me up every night. Keloids are not common and you would know by now if you get them. I’ve only ever met one other person with them. I have a history with them starting at 3 years old when I had the smallpox vaccine and got a large raised red keloid scar instead of the usual little indentation most people got.

The radiologist that did my initial breast biopsy and diagnosed my cancer was wonderful. The nurse told me to wait for her while she was on vacation because my tumor was small and deep and this radiologist doesn't miss. So I waited and she didn't miss. The radiologist later told me that something like only 4 out of 1,000 mammograms are cancer or something crazy like that so she was saying it's like finding a needle in a haystack and radiologists can easily breeze through each image assuming each one is going to be no cancer. Luckily for me, she wasn't one of them. Radiology is one area I think AI might come in really handy in addition to a radiologist reviewing the scan.

Your original tumor was larger than mine. My small 7 mm tumor was caught in an annual routine 3D mammogram. I also had dense breasts. I knew I was in trouble when they told me I had three types of tumors. I figured surely one type would be cancer and it was. Yes, I think my recurrent cancer likely popped up in the year between ultrasounds so I don't think there was a mistake there, but do think it may have recurred due to a mistake during the mastectomy. I'll never know for sure.

When I was first talking to my oncologist about the recurrent cancer in my chest wall and muscle, I asked, "Just for the sake of argument, what would happen if I did nothing right now?" He said the cancer is so aggressive this time that it will be everywhere within months. Eeek. After removing the tumor, we can no longer see a BC tumor anywhere on the scans, but he does believe due to the aggressive nature that cells likely got away to other areas before we removed the tumor. And then there's the positive margin and mishap during radiation. It takes millions of cells to form a visible tumor so it’s just a wait and see with my scanxiety increasing as more time passes. At this point, my advanced cancer is considered incurable, but treatable so I will always be on some form of treatment now and continue to hope for the best. So far, the meds are holding it at bay. I have a lot of medication side effects, some serious, but I can still enjoy life.

I also have 50+ lung tumors (discovered in 2008) from neuroendocrine lung cancer that are very slow growing (Ki-67 2%), but I wonder if my breast cancer were to spread to the lungs would they even notice a BC tumor among all the lung NETs? I hope so, but it would be like where's Waldo? Again, AI might be handy to identify any changes.

Ask your surgeon what kind of margins will be taken to be safe. If you have a mastectomy and don’t opt for resconstruction then be sure to ask about extra non-breast tissue that if left behind falls to your sides even when you're upright. It's uncomfortable and unsightly. The BC world calls it "dog ears" which I find to be a horrible nickname. My former oncologist told me that and laughed. I was told by the cosmetic surgeon in advance that "dog ears" or what he called "side boobs" are the main complaint by women who have a mastectomy. Apparently, during reconstruction that excess tissue is pulled back around to the front. I think my BC surgeon thought I would change my mind and want reconstruction later so I think she left more tissue behind than she should have for someone going flat. Not happy with that at al, but not willing to have more surgery to correct it and can't have keloids on my sides where my arms would rub on them. Egads. You’re doing the right thing by asking lots of questions.

Ohhh...Zebra,

I am near speechless... Ughhhh, my heart is very much crushed for you.

You understand my fear and concern of disturbing/spreading cancer cells (a form of cross contamination) via blood and tissue! How can oncologists and the scientific community say there is no proof? NIH research commonly includes inducing cancer, bacteria, virus and a whole array of diseases in mice (other animals also), for experiments/study's.

Tuesday I see an oncologist I have met once (March 2023). I would like to request a mastectomy which removes all tissue, without disrupting or cutting anything near where the MRI shows suspicious cells near the nipple and no lymph node removal. It's my opinion that IF there were cancer cells in a lymph node (or nodes), there is a very good chance of being Stage IV and it would do no good and leave me with additional lymphedema. I have chemotherapy induced neuropathy in my right arm. To me, it was better than frying my heart with Cytoxan and Taxotere. Considering what it did to my arm/veins, I believe I made the right decision.

I was entirely sucker punched by the MRI and really know little about breast removal. I want the right breast gone and am ready to have the other removed also. Nine years ago I was desperate and so fortunate to have had reconstruction which was over the top, considering the mess the reconstruction surgeon had to work with. Swedish breast surgeon spent 7 hours trying to undo a twisted and contorted mess. All skin and nipple were there, just tied up like twisted bun, with the nipple facing 3:00 PM. - towards the armpit.

In the end, I'm tired of holding my breath every time I have a mammogram or MRI.

This is new territory for me and I would be grateful for someone with more knowledge and better words to make suggestions. I hadn't heard about the "dog ears," but can visualize this and would like to avoid it. I'm thinking "muffin top," except up where the bra sets, below the armpit. And to think there are "Breast Surgeons" leaving women even more disfigured than they have to be...

I'd like to know if you have researched Antabuse or Fenbendazole? There are very promising studies by the National Institute of Health on both drugs.

Thank you for sharing.

@deborahmontana
You know I always wondered if cancer was spread by the scalpel during surgery, but I was only thinking about my chest. Until I just read your message, I didn't even think about the lymph nodes. I had 6 removed for biopsy and now I'm wondering if she used the same scalpel for the mastectomies and the lymph nodes. If she didn't think cancer cells were on the scalpel then why wouldn't she use the same scalpel? Hmmm.

I think cancer in local lymph nodes is considered stage II, but others may have more to add about that. Ask your surgeon a lot more questions about that. I for one want as much cancer surgically removed from my body as can be. To me, it seems the more cancer cells there are, the more that can divide and spread. They also don't know how to treat your cancer unless they know the stage.

It sounds like you were really lucky with the reconstruction. That was a very visual description with the twisted bun. Eeek.

Dog ears, yes exactly, muffin top underneath where the bra would be on your sides under your arm pits. They weren't there before the mastectomy. It causes an extra 4" girth around my chest. I could wear a size smaller blouse without those. If I wear my prostheses then it's not so noticeable, but if I go flat, you can notice the bulges on my sides. For awhile I even got too thin, but those were still there. Troopers! Looks weird so I tend to wear loose blouses when going flat which is most of the time because the prostheses are hot, heavy and uncomfortable. Like wearing a backpack, but a front pack. I'm at least lucky that the skin doesn't fold over on the sides. It does for some women and causes a yeast infection in the fold and then surgery to remove the excess tissue is no longer optional.

Speaking of being disfigured, I also don't understand my incisions/scars. My surgeon did an inverted T cut on each side leaving me with about 22" of keloid scars total. I have never seen that cut in a photo. Photos I've seen online show maybe a 5-6" horizontal incision where each breast was and that's it. The next surgeon for my recurrence didn't seem impressed with the lack of flatness on the front of my chest either and flattened that one side more when the chest wall tumor was removed, but it still doesn't look good. Still too bumpy. My chest looks nothing like I imagined it would. I would ask a lot of questions about what it will look like afterwards. Ask to see photos of what it will look like. I was shown photos of what reconstruction would look like, but not what flat would look like. People with normal scarring probably have the scars nearly disappear with time. They kept telling me the lumps I felt underneath the skin, below the incision, post-mastectomy may be scar tissue so maybe my scarring disorder is to blame for some of that too.

No, I hadn't researched or even heard of Antabuse or Fenbendazole. I just looked them up for a brief overview. I do know that @leeann66 is in a stage III clinical trial for a new breast cancer drug Tropion for women with stage IV cancer who have tried other treatments and they stopped working. It seems to be working great for her last I read, but who knows when it will be approved. You might want to search her screen name for threads about it.

I hope you'll be on the other side of all this soon so you can get back to enjoying life.

Hello Zebra,

"I'm wondering if she used the same scalpel for the mastectomies and the lymph nodes."

I never thought or considered that, but am a believer.

IF I cut up a chicken on a cutting board, I doubt you want me to use that same board and knife to then prepare a fresh salad. Right? You would want the board, knife and my hands absolutely sanitized - for GOOD REASON which does not require a degree in biology or pathology. Let's explore that more: The gloves and anything else which came in contact with tumor cells? Ughhhh...

IF a cancer patient were to ask one of these loud doubters if they would like an injection of cancer cells from someone else put in their body, I am pretty darn sure they would respond with an immediate "No."

Though 99.9% of all scientists and health care workers will flat out deny that cancer cells can spread via biopsy (digging around in a tumor), low and behold, I found a buried study by the NIH (National Institute of Health). The holy grail...of spreading cancer cells. There's no way these doc's and pathologist's haven't considered this. I TRIED to include the link, but this site won't allow. g o o g l e - N I H T u M or Cell Seeding

As a result of my own online research, it appears 80% of all biopsies are negative. I recognize that surgeons have few choices. This is the difficult part. Without biopsy, it would be unreasonable to offer mastectomies, especially women and men who have a small, but suspicious findings. So, what choices do surgeons and oncologists have? Few, if any. But, I also wonder if radiologists and oncologists do more biopsies than they should. My 84 year old aunt has had like 7 biopsies and none were found to be cancer.

Partial Success! My new oncologist is a human being first and a doctor second. He listened! Yesterday, he agreed to a mastectomy of my right breast with no biopsy. BUT today I learned that my insurance, which 9 years ago would have paid for a mastectomy on both sides, refuses to pay unless I undergo biopsy first.

It is my understanding that as I write this, the oncologist is attempting to set up a pathologist who would be immediately available to examine the tissue removed. IF the tissue sample/biopsy were to be cancer, then I would be taken immediately to OR and have breast removed/mastectomy. This oncologist is probably a 1% er'... who cares.

There is almost no explanation for anyone having a very small cancer biopsied (LCIS - DCIS - under 10mm), then removed with lumpectomy (later) - and years later after being told they were "cured" and "beat it," diagnosed with Stage IV. Biopsies must be responsible for spreading the cancer or cells naturally break off from the main tumor and move via lymph and blood (I believe that is Angiogenesis). Not sure if I spelled that right!

After my original diagnosis, I spent the next 2-3 years living in continual fear of cancer. It occupied my mind on and off, all day long every day. Very unhealthy, mentally and physically. I managed to put it aside for the most part and rarely talk about it. I would become stressed mostly in the month or two prior to scans/mammograms, etc. Then find calm again, until this recent suspicious finding, something I never imagined (other breast).

At best, this is a conundrum...

I believe it is wrong (per the study) for anyone in the healthcare field to claim cancer cells cannot be spread during biopsy. The cells are microscopic and even the needle or scalpel would have some attached, which would obviously migrate to other areas.

@deborahmontana
We're on the same page with the possibility of spreading cancer with biopsies. It only makes sense when you think about it. It's a catch 22 though since you need the biopsy to know if it's cancer and what kind. My brother thought he injured his back at the gym due to paralyzing pain. They found tumors and suspected they were bone cancer, but the biopsy revealed it was stage IV lung cancer that had already spread to his spine and pelvis. He never smoked a day in his life so it was a shock and the two primary tumors they then found in his lungs never caused any symptoms throughout his battle. They never would haven't know what kind of cancer or how to treat it without the biopsy.

Good luck on your mastectomy. I hope you have a quick recovery and that will put your mind at ease so you can enjoy life without thinking about it all constantly. I really didn't think about my cancer for years after my mastectomy until it recurred. All my followup appointments and new physique just felt like the new normal and I really didn't expect to hear bad results from scans. I have more scanxiety with my current situation, but I still enjoy life and try not worry about it in between scans.

Hi Zebra,

Forgive, I have not read back through your posts.

Have you had genetic testing?

I wish you would find a homeopathic type MD and go on Antabuse or Ivermectin or that other one. Why not? If you're Stage IV, how could it hurt? Over and over oncologists have proven that the toys/chemicals/drugs in their bag, do not work.

I know they want their patients to do exactly what they say, typical obedient cancer patient. Yet, the outcome will be the same as everyone else with Stage IV. We are all going to go, but why not TRY something different, when we know their regiment is not going to work?

Go o g le N I H Breast Cancer Turkey Tail Mushroom