TNBC recurrence in my clavical lymph node
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Santa and Lucy,
I agree. I think Wendy was in denial and her doctors did the absolute wrong thing in not forcing the chemo issue. Perhaps they did, and Wendy didn't understand, thinking 2cm tumor is 'small' which it's NOT with TNBC. Perhaps they had sign waiver after waiver and she blocked it all out. It's all so sad that a TNBC patient did not have chemo by choice or ignorance from lack of doctors explaining the urgency and she left her two girls behind. I'm sad for their family and this just reinforces how we have GOT to research ourselves and be our own advocates... no one else cares like we do about our lives.
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Very sad, but she did admit that the drs. told her that she needed chemo, but she refused and decided to focus on reconstruction instead. She had tumors in both breasts and I believe she thought mastectomy would take care of it. She was surprised when it came back 2 years later. She also mentioned that she did not want to lose her hair. I hate how these decisions are life and death and can affect many people besides ourselves.0
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I am so mad for Weim reading this! I just happened on this thread looking for some info. Her drs totally failed her and then blamed her! She did not need to suffer like she did. Man this makes me mad! RIP Weim!
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cattledoglv - I agree 100%. Wendy took the blame, but I think her doctors failed her. There seemed to be no sense of urgency for them. We all know what it’s like - a complete whirlwind of emotion. Honestly, if I didn’t have my husband with me I wouldn’t have understood most of what was said at most appointments - I was in shock .
And breast cancer turned out to be so much more complex than I ever imagined. I’m also fortunate to live in an area close to many great cancer hospitals.
I just weep for her family.
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This is so sad.
I've thought of Wendy often since she posted about her recurrence last summer, since her initial diagnosis was similar to mine, hoping for an update, hoping it wasn't as bad as it seemed, just hoping for her.Love to her family, especially her girls.
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so sad to hear this. how can I find her husbands post?
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Look up Wendy Hancock on FB.0
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I have searched and searched... I cannot find a Wendy Hancock from Corinth... Can someone pm me and direct me? I did find a link to an obituary but sadly the link was broken.
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Also, rereading her posts... Look at this one specifically... if this is correct, this would be massive negligence by the docs:
If your suggestion that I should have had chemo because my tumors were bigger than 5mm, and they were, then I would agree now I suppose. At the time I was told there was no evidence that chemo could help nor harm or that any cancer was in my body so did I want to take it anyway 4 months (past the window of best help) anyway?
Now what that MO recorded on her chart was that I refused because I didn’t want to lose my hair. She didn’t include that she couldn’t get the final approval from tumor board and that she waited until 4 months after surgery and diagnosis. Also both surgeons suggested there was no reason to do chemo.
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My heart breaks for Wendy's family. I remember reading her posts noting the similarities in our pathology findings. Here's a link to her obituary:
https://www.magnoliafuneralhome.net/obituaries/Wen...!/Obituary
We weren't there to know if the oncologist could have been more forceful in encouraging chemotherapy. Still, making some assumptions about her pathology, the UK Predict tool suggests that chemotherapy would only provide a 5% benefit in terms of 5 year survival and 7% longer term. Let's assume the tool is rather inaccurate and there was instead a 10% benefit, that's far from a guarantee that pursuing the most aggressive chemo protocol available would have changed the tragic outcome. We need more effective treatments for triple negative cancer so more children won't lose their mommies as Wendy's have. Her family and friends must be devastated.
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Thanks VLH, The viewing is today... it really touched me, this whole thing... and how quickly things can change. I never thought care would be different anywhere in the US, but this has shaken me.. it's like Corinth MS is a third world county in telling her Chemo wouldn't help her TN.
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Very, very upsetting indeed. Thank you for sharing, Lisey.
None of us were there for the conversations, so we should not speculate and blame Wendy or her doctors. The fact is that some women do surgery only and are fine, for others, that is not the case. Sometimes doctors explain things, and we only hear half of what they're saying because it's all such a shock, and a lot to take in. The fact is that this despicable disease took another life way, way to soon, and we all need to do our best to advocate for better treatments and more research so that a cure can be found. Praying for her friends and family.
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With substantial-sized TNBC tumor, however, is never a good idea skip chemo. Not all doctors are good doctors. Not all regions offer good care. I think those of us who live in more urban places with more options and specialists are in a lot better position. (For example, a specialist reading our imaging, not a general doctor). I know for sure my MO would have told me skipping chemo would be likely to kill me. He would have been that blunt and cut through my denial. It is up to the doctor to convey important info with appropriate urgency and fervor. Especially when, as you point out, the patient may be in shock.
I pursued Proton rads out of my home state. So I had to set things up myself. Meanwhile my MO stayed on my case to make sure I got started in a timely fashion. he even gave the local RO my referral, so I had them bugging me too, making sure I did not delay beginning or somehow or fall through the cracks. I appreciate having a doctor like that!!
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I wouldn't want to speculate on how things went with Wendy's doctors when she was diagnosed, and I know that chemo is the gold standard for TNBC, but she did mention that she'd expressed concern about her hair with her doctors, and that's what ended up in the notes - that she refused chemo because of the hair loss. Again, I wouldn't dream of speaking for her, but my diagnosis was also TNBC, and when I met with my MO the first time and he told me about his chemo plan for me (no discussion, no questions asked, just "You're going to do this"), and I expressed concern for my hair and my desire to try cool caps, his attitude changed immediately, and his response was, "Fine, then go ahead and cancel the chemo." He wasn't interested in discussing my concerns or addressing them, he wasn't interested in talking about the pros and cons of chemo and the side effects, he became very cold and harsh when I said I was concerned and behaved like he didn't give a damn what happened to me. He was rude, he became angry and mean, and told me several times to go ahead and cancel the treatment if I was so concerned about my hair. His attitude indicated to me that he didn't want to be questioned, and that if I didn't just go along with everything he said, then I could just go ahead and die, for all he cared. It was awful, he repeated several times during that appointment that I should just cancel my treatment, even till the very end, just before he left the room, reminding me to call the chemo unit right away to cancel so that they could give my space to someone else.
Not every doctor is caring, not every doctor is compassionate, not every doctor is concerned with whether you live or die, some doctors have huge egos and don't want to deal with "difficult" patients who voice their own thoughts and opinions.
I've been thinking about her a lot and wondering if maybe she experienced the same sort of thing with her medical team, if her doctor wasn't receptive to her concerns and willing to discuss them with her, if they just brushed her off as some silly woman more concerned with her looks than her life, if they were offended by the thought of a patient questioning them and their treatment plans, if they just turned their back on her when she expressed her concern about her hair. I'm not saying that that's what happened, but it happened to me, and I truly hope it didn't happen to her.
(I did the chemo, I lost my hair because scalp cooling is banned by the "progressive" cancer agency here, and it had a huge impact on my mental health, my self-esteem, my identity, but none of that mattered to the MO and I suffered with minimal support. MOs need to understand that hair loss is a huge concern, it's not "just hair" to everyone, it matters, and that should be considered when planning treatments and talking with patients.)
(And yes, I did ditch that MO after two nightmarish appointments with him, cancer is traumatic enough without dealing with that sort of nastiness from the doctor tasked with keeping you healthy.)
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Anxiety Girl, that doctor sounds atrocious. Vehemence is one thing, but "well, go F yourself then" is quite different. He sounds awful and I am happy you got someone else!
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I had a doctor like that. It took a long time before I had the courage to dump him, but when he told me to ignore lumps because I was not at risk for recurrence, I finally did. Indeed there are bad doctors out there. Since I was not at her appointment to speak for her, I would not want to speculate. Either way, it is a very sad, sad situation. The best we can do is if we see someone who's triple negative who's doctor tells someone like that on here, or at home, to have the courage to speak up and encourage more opinions. Everyone will ultimately make their own decisions, but encouraging multiple opinions will help ensure that the accurate message is conveyed and understood. And then...whether we agree with people's treatment decisions or not, respect them, nad know that they made the best decision they could for them at the time.
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KBee,
I think we need to be very vocal when someone comes on here thinking surgery alone would fix a 2cm TNBC tumor. And Frankly, unless they flatly acknowledge the risks of what they are doing, I'm not going to respect a decision that may be being made out of ignorance. I'm going to push and push until at least, they understand what the medical standard is and why the choice they are making is dangerous / life threatening.... (such as this was). If you notice, when I posted about chemo, Wendy pushed backed, truly believing her 2cm tumor was 'small' and chemo wasn't needed. That's not being aware of the facts to make an educated decision, that's being completely misled by doctors / or ignorant of the true condition she was working in.
So... while yes I would respect someone's decision, so long as they are educated on that decision, I will not just stand down if they are making their decision based on completely false facts.0 -
Lisey, I agree. It stuns me sometimes how ill informed/ in the dark people on this site can be. A lot of them sayi "Don't Google!" I say "Google like a MF! Like your life might depend on it"
Not knowing their own odds, so they CAN'T make informed decisions like adults. There are a lot of people who just want to follow instructions and not know details. In a case where you have a bad doctor or a sloppy read of your imaging, or any other F up, this can be lethal. In the case where you have a GOOD doctor, you may also get the shock of your life when following instructions hasn't helped you. Or when you have SEs that make a saved life a misery. It is so important to know what one is dealing with and to make informed decisions, so regardless of what the outcome is, you can live with the decision and the outcome.
I have a great doc and it was still me, Googling, that led me to Metformin, which he then prescribed...
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Santa, Totally agree... you and I are clearly the same spirit animal. I get spicy with people who tell others to not do their own research and 'trust their doctors'... um.. no... do you own Fing research. In fact, I was turned away after my mammogram saying I was fine and that lump I felt was nothing... Nope. I basically had a world class meltdown in radiology until someone, anyone felt the damn lump and I pushed and pushed to be heard. I was also turned away when I pointed out a black freckle I had, they all said 'No, it's not melanoma, it's a cute little perfect freckle"... Nope.... I had to DEMAND they cut it out.
Let's not even go to the plastic surgeon who pictured me with fake C boobs, when I demanded he take the tissue expanders out of my body. I had to tell him I'd be in the parking with a knife and my attorney on the phone if he refused to remove them immediately.
Point here is if I listened to the doctors, i'd be dead several times over. You absolutely need to be the educated adult in the room over your own body.0 -
Santabarbarian, he WAS atrocious. I was appalled by how he behaved in my appointments with him, as were the other medical professionals to spoke to about him. When I expressed concern about my hair, he said, "Well, do you want to keep your hair or treat your cancer??" and then proceeded to tell me to just cancel my chemo treatment plan after refusing to acknowledge or discuss my concerns, and he also never really impressed on me the importance of chemo for triple-negative and the risks of declining it - most of the information I had on it was what I'd researched myself before the appointment with him. He told me that I should do chemo, but when I expressed my concerns (at no point did I say that I wouldn't do it, by the way), he was very flippant about it. And afterwards, when I was days away from losing my hair and in a very bad place, mentally, and asked him for help, he told me to just get over it (because "everyone feels that way") and refused to offer assistance or even a good suggestion for where to go for help (it was only when I begged that he finally told me to take it up with my family doctor because he doesn't deal with anxiety). He was a condescending, self-righteous jerk who made me feel like I was the worst inconvenience in his life and I had the distinct feeling that he was used to dealing with patients who never asked questions, never did their research, never pushed back and just did what he said, for better or for worse. Seriously, there wasn't enough space in the exam room for me and his ego.
When I asked for a different doctor because I was so unhappy with how he treated me, I was told that I just had to keep seeing him, and I told them that I'd walk out of my next appointment if he walked in, simple as that, because it wasn't worth the stress of dealing with that awful human, and that, along with a nurse advocating for me, is what it took to get rid of him. My other experiences with oncologists haven't been much better, but he was, by far, the very worst, and I would not be surprised if other patients out there are dealing with similar situations. Stand up for yourself, everyone, don't be afraid, it's your life, your body, your health, and not all doctors are created equal!
(I can't say enough good things about the nurses, though, they were supportive and understanding and attentive and helpful and just really, really lovely, I wouldn't have gotten through this without them, the doctors would do well to take a page out of their books for a change.)
I just hope that Wendy was well-informed about her decisions - like Lisey said, we don't have to agree with someone's treatment decisions, we just have to respect them, but that's only if they were well-informed and properly educated on the repercussions of those decisions. I hope that Wendy's doctors were clear with her about the impact of the choices she made, and that they weren't just careless like my MO was. If Wendy was willing to forego chemo fully knowing the risks, then that's one thing, but if she made that decision, and had to sign off on it (presumably to cover the doctors' a$$es), without fully understanding the risks involved because she wasn't properly informed by her doctors, that's something else entirely, and that is completely unacceptable. This is already so very sad, and my heart aches for her, this has weighed heavily on me this week, but it would be even more heartbreaking if she wasn't properly informed of what she was facing, and that would be a failure on the part of her doctors. Again, I don't know how it went, I wasn't there and I wouldn't want to speculate, but I really really hope that wasn't the case.
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This thread caught my eye. I know many women dealing with TNBC, several of them post on the IBC Lounge. Like others here, I'd be horrified if anyone was told chemo was optional for this bc type. I have to say, also, that if you aren't advocating for yourself throughout the whole treatment process and afterwards, you run the risk of getting second-rate treatment. Doctors and other medical professionals are busy people and before you have finished your appointment they are thinking about the next person
And, as santabarbarian says: A lot of them say "Don't Google!" I say "Google like a MF! Like your life might depend on it"Ive had to Google from day one (the lump) because I couldn't get my PCP to send me for an ultrasound. In the end (three months later) I demanded, but it was at the stage where IBC had set in and the nipple inverted. Not once did she examine the breast. All through treatment I needed to reassure myself that I was on the right path.
So, Wendy's story is heartbreaking, but at the same time an example to all of us to keep an eye on things. After all, nobody cares as much about yourself as you.
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I am so sorry about the loss of Weimlover--my heart goes out to her family.
AnxietyGirl: re your description of your previous onc as "a condescending, self-righteous jerk who made me feel like I was the worst inconvenience in his life and I had the distinct feeling that he was used to dealing with patients who never asked questions, never did their research, never pushed back and just did what he said, for better or for worse. Seriously, there wasn't enough space in the exam room for me and his ego."----unfortunately that describes many an oncologist. And I see you are in Canada.
I believe the situation is even worse in Canada because it is socialized medicine and at least in Ontario if you are not happy with the service you are receiving at your cancer center you cannot switch, they are geographically determined. You would literally have to move to get to a cancer center you preferred.
I ask a lot of questions at my appointments, and have already switched oncologists once. I don't like my new oncologist much better. I too have a BC recurrence with two large tumors in the lymph nodes below my collarbone, and reading about Weimlover terrifies me. Mine are inoperable and cannot be radiated because of previous radiation. Luckily I have the Ibrance/Letrozole regime available to me because I am ER positive. I'm sure I am not at all a popular patient, because I do think most of the doctors prefer the compliant patients who don't ask a lot of questions or challenge them, and especially who don't take a minute more of their time than their allotted fifteen minutes. But it is VERY easy to fall through the cracks if one doesn't vigorously self-advocate. For example, I was never put on a medication to help preserve my bone density until I brought it up. Only then was I put on Prolia and my previous onc flippantly said, "oh yes, most of my patients are on that." Well, what about me? Thus I asked to switch oncologists.
This condition is tough enough to deal with, and I think there are many oncologist who offer care that is not good enough.
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