TRIPLE NEGATIVE (Age 74) Lumpectomy (twice) ONE positive sentinel node - REFUSING TREATMENT
Good day,
I'm writing on behalf of my 74 year old mother. She was diagnosed February 2023 with Invasive Ductal Carcinoma and Ductal Carcinoma In Situ (IDC & DCIS). Triple negative was our diagnosis. Ki67 is 20-25%, Grade 2, Apocrine features.
First lumpectomy - (March 2023) clear margins, one out of six sentinel lymph nodes positive for "macrometastasis" (4mm) - TUMOR SIZE 1.5 cm; there was a questionable area near the medial margin so they proceeded with a second lumpectomy - margins all clear (no cancer).
TREATMENT recommendations are 4 rounds of TC (Taxotere & Cyclophosphomide) followed by 30 - 35 rounds of whole breast radiation, lymph nodes under arm radiation and up the side of neck area radiation.
My mother is refusing ALL treatment. I cannot say I blame her. I know that TNBC is very aggressive - however - she is older and I take into account the possible horrific side effects that both chemo and radiation can impose.
I want her to live her remaining years (hopefully a billion more) in happiness and no stress.
Are we wrong in supporting her decision not to treat? I hope not.
It seems there are NO ARTICLES or STORIES you can pull up on Google showing the people that refuse treatment (and of course no studies because Big Pharma wont pay for any of that) - but I have to believe there are people that HAVE REFUSED conventional treatment - and not even done anything too far out with the other holistic treatments etc that have SURVIVED and THRIVED!
Like Titanic - I want my mother to "die an old lady, warm in her bed …." - I don't want her suffering through chemo and radiation and be debilitated for her remaining years.
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No you're not wrong to support her! It's everyone's personal decision in regards to how much treatment they are willing to tolerate and your mother is no exception to the rule. I will say though to make sure you know the possible consequences if you refuse treatment. Triple negative is notorious for spreading through the blood stream and has no treatment beyond chemotherapy and immunotherapy. So if she refuses that, with a positive lymph node, her chances are very high that her cancer will spread and come back. If she is comfortable with that risk, then by all means she should go and live her life.
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My.mother had breast cancer and the full six weeks of radiation at the age of 85. She had NO side effects from radiation except the position aggravated her already-arthritic shoulder. I'm 73 and I certainly don't think someone of 74 is terribly old. I had my radiation at age 68, and, like my mother, had no problem with it. The horror stories are from people who did have problems. Nobody who sailed through treatment usually posts about it, so you can't interpolate any statistics on how many patients have bad reactions. Unless your mother has debilitating medical conditions, I'd urge her to keep an open mind.
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Ultimately, the decision is your mothers. You have chosen to support her which is a wonderful thing as opposing her would only create stress. No one can predict how someone will react to treatment and while you can point this out to your mother it comes down to what she wants.
Yes, there is a lack of info on those who refuse treatment but it’s probably not because big pharma won’t pay for them. Likely it’s because of medical ethics and simply not enough patients who refuse tx to yield significant findings. The reality is that most people don’t go against medical advice . I suppose people who choose this path could be followed but research funding is not likely to go towards watching people deteriorate and die because they chose no treatment. That’s why the ethics of such a thing would be sketchy.
Take good care of yourself and your mom.0 -
TheCruiseMermaid, I'm very sorry about your mom's diagnosis. You might find this tool helpful in determining how much impact chemotherapy might have on your mother's future survival (not knowing anything about any health conditions she might have):
If that link doesn't work, I found the tool by searching Google for "British predictor tool impact of chemotherapy on breast cancer survival." To see some of the info, you may need to search on a computer rather than a phone. Her chemo would be considered 3rd generation.
I was initially diagnosed as ER- PR- and HER2+ based on a core needle biopsy. I was 61 years old and my ki-67 was a whopping 90%. I was Grade 3 or 9/9 on the Nottingham scale that measures how aggressive the tumor is. I went against medical advice, which was to have six months of chemo prior to surgery. Surprise! The pathology report for the solid tumor removed during surgery showed Triple Negative, NOT HER2+. All three nodes removed were clear.
Picture a room of 99 women and 1 man. The tool I shared showed that for my particular risks factors, chemo would statistically save the lives of 7 additional patients. Given my extremely high grade and ki-67, I reluctantly moved forward with chemotherapy.
I don't have all your mom's specifics, but suspect that the Predict tool won't show that her chances of the cancer spreading are "very high." My surgeon made it sound like if you had chemo, you survived and if you didn't, you died. Although the survival odds I shared for my situation show that it's not that simple, KayNotRealName is absolutely correct in acknowledging that Triple Negative cancer can be very aggressive and that chemo provides a statistical survival advantage. Those statistics don't reflect any changes in the quality of life after treatment.
As of this month, I'm 7 years out from diagnosis and, luckily, just had another clear mammogram. Everyone's chemo experience is unique. I strode in to my 1st chemo treatment briskly and ended up having to use a rolling walker within the first month. I still have neuropathy in my lower legs and feet and I have frequent tachycardia (alarmingly fast heart rate) attacks. That is NOT typical and many go through chemo w/o any long-term problems.
I hope that all goes well for your mother, whatever she ultimately decides. How wonderful that she has a supportive adult child to help her at this difficult time.
Lyn
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Decision-making when it comes to the choices one has to make can be so tricky both as the patient and the caregiver. Like @exbrnxgrl shared, it is commendable to support your mother's choice in the process. You might find some literature around this topic if you try using the keywords "right to self-determination." This philosophy is a core value in the field of social work, where an individual's autonomy is regarded as essential when it comes to their treatment. This article from 2019 goes into it:
This article also seems like it would be interesting, but it is blocked by a paywall and is also focused on patients' perspectives whom are metastatic.
If you are able to find qualitative studies, they might provide you a bit more insight into what the patient perspective might be.
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Thank you for choosing to support your mom's decision. The decision to do or not do treatment should be the person with the dx. It is hard to hear others tell you what to do when they have not been in your shoes until you learn to listen without really listening at all.
My closest friend is going through this with a parent. My friend pushes for treatment and the parent argues against it. It has been hard watching them struggle through their frustrations. I let my friend know that at some point they have to try to let their parent be at peace with the decision since it can't be easy for a parent go through it knowing they are disappointing their children by not doing treatment. I don't pretend to know what that must be like for either of them.
I wish you lots of time and happy days with your mom.
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I also thought that my Tnbc cancer treatment is going to be awful, but was really surprised how easy it was. Everybody is different of course, a lot depends on age of the patient, on stage of the cancer and a other things, but for me, the treatment was not hard at all, I worked full time thoughtout. The hardest part was chemo. First 3 days after each chemo session (I had 4 every 3 weaks) I felt like I was really hungover, heavy head, queasy, brain dead and weak. I would just lie in bed ,watched silly shows, ate snacks and felt sorry for myself. All the other times during chemo, I just felt more tired than usual and more sad. Surgery was a breeze. It was almost zero pain, I had lumpectomy. Radiotherapy was also zero pain and didn't effect me at all. I kept waiting for terrible fatigue and potential skin burbs that could happen, but none of it happened. Skin was just a bit itchy at the end. Whole treatment was not worse than having 4 really awful hungovers. I
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HELLO EVERYONE! I typed up quite a bit here and tried to answer each and every one of you kind ladies that responded so here goes:
KAYNOTREALNAME: Thank you for your comments. Yes I’ve spent many opportunities explaining the “potential” – or even as far as “expected” consequences when dealing with triple negative. My mother understands all that – and still stands firm on “no treatment.” (Other than the now two lumpectomies she’s had …).
ALICEBASTABLE: Thank you for your comments. I am so happy to hear both you and your mother had no side effects from radiation – that is astounding to hear! It definitely makes me want to reconsider in pushing a little harder for my mother to receive radiation at least (even with foregoing chemotherapy) – but then where I falter on that is the fact that the radiation oncologist told us that “the benefits of radiation PLUMMET without also including chemotherapy / immunotherapy …” (but mostly omitting chemotherapy) – so there is that which gives me pause in pushing harder for radiation. It also gives me pause since we know it has made it into the sentinel lymph node. That makes me nervous that the metastatic ball has already began rolling – so in essence with radiation being “local control” – it will do ZERO for the whole body control (hence where / why chemo is important …)
EXBRNXGRL: Thank you for your comments. I agree – most people do not go against medical advice – but I would really REALLY like to see some articles or webpages discussing that. I just can’t seem to find hardly any – if at all.
VLH: Thank you for your comments. *YES* - I have long since found “Predict Breast” – and with inputting everything with my mother (age, 74, 1 sentinel lymph node (macrometastasis), third generation chemo, triple negative etc etc – it shows that foregoing chemotherapy (note – Predict Breast DOES NOT include radiation which I think is strange? Why not?) – but my mother’s percentage for the 5 year mark is 66% with NO treatment (surgery only, again does not include radiation) – and WITH the 3rd generation chemo her percentage for 5 years is 71%. For me – I find that very very close in percentages to warrant NOT doing treatment (again based on my mother’s wishes) – however when I proposed the Predict Breast to the Oncologist he was like “Oh that doesn’t take into account for Triple Negative ..” – and I was like, “Well, yes it actually does …” – and then he says, “Oh well that doesn’t take into account the lymph nodes ..” – and again I’m like, “Well, yes it does …” – and so FINALLY he says, “Well, ok then yes – those percentages are right – its about 50/50 ….” So again, found that strange? But without patients and treatments – the oncologist wouldn’t really have a lucrative “professional business” now would he ???
Further, for the Ki67 – the Predict Breast only allows to show “positive” or “negative” (i.e., greater than 10% I believe??) – and we know that there is a difference in being 20% as opposed to 90% and in my mother’s case she is about at 20 – 25 % which I’m confident is at the “low” end of being considered “high …”
OBSOLETE: Thank you for your comments. Yes after my mother’s “first” lumpectomy (which the pathology report claimed that all margins were negative) however there was a suspicious area that they claimed they could not tell if it was cancerous – hence the reason for the 2nd lumpectomy) – but BEFORE the 2nd lumpectomy they wanted to do a PetScan (and in the event there was any other detectable via scan cancer they would NOT have done the 2nd lumpectomy). But her PetScan WAS CLEAR so that was very good to know – (however I do realize that sometimes scans cannot pick up everything so that is cause to worry) but the 2nd lumpectomy indeed showed that area was not cancerous and hence full clean margins. (Although in first lumpectomy there was 1 out of 6 sentinel lymph nodes that were positive so that is disturbing …)
My mother “initially” was offered a mastectomy and therefore could forego radiation – however – the surgeon did not recommend that at her age (74) as it would be a more intensive, hospital required surgery.
We have definitely researched and chatted with ALL the professionals – including a second opinion from my father’s oncologist (my father passed in 2021 from Melanoma skin cancer) and even his recommendation was TC chemo as it would be tolerable and has proven effective. (I realize THEY ALL must go and be bound by the “standard of care” so I really did not expect any different outcome in seeking additional opinions).
I have went over, above, and beyond in my research and I too have been in great fear not only from “initial” core needle biopsy possibly causing “re-seeding” of cancer cells as well as surgery “moving all the tissue around” also causing “re-seeding” of cancer cells and that scares me to death. I would like to “hope” that my mother’s immune system is strong enough to fight those cells but that is where hope and prayer has to conquer. (But at the same time I cannot neglect the biological and science part of how cells behave … but also we all know every cell in every one of our bodies is different so there is that as well – BUT that is also why we have “statistics” and “clinical studies” etc …) It is all so so hard navigating the right path …
I appreciate you providing those links with radiation inducing reprogramming of cells making them resistant to treatment – and thankfully I have found all those articles as well and am horrified by the fact that the options we choose (and are encouraged to choose) can sometimes cause WORSE scenarios. It’s like you are damned if you do – and damned if you don’t …. It is never an easy choice!
MODERATORS: Thank you for your comments and for those links! They are truly helpful!
WONDERING44: Thank you for your comments. I have researched anything and everything for my mother and we have had so so many talks and chats and as I’ve told her many times – I HAVE to give her ALL the options and ALL the “possible” outcomes – I cannot candy coat anything – but if it is indeed her decision to forego treatment I support her 100%. I would never ever push her to do anything that she isn’t 100% committed to because I know mentally you must FIGHT – and if a person does not WANT to engage in that mental fight – all the pushing anyone else does is fruitless. I want my mother to know that no matter what – I support her and will ALWAYS be by her side and take care of her no matter what the outcome.
AZAZELJ.777: Thank you for your comments. I am so happy for you that you got through your treatment and you didn’t have a hard struggle with everything! That is so so wonderful to hear! I hope and pray your cancer stays away and you live a long and happy life! As I’ve mentioned above, I fear that if my mother doesn’t “mentally” accept treatment – she will not do well with it. She has never been one to handle any sickness or surgeries or pain well at all. That is where I’ve stressed to her that if she’s not prepared to accept the fight ahead – it will be hard on her. BUT I also expressed that she can do anything she puts her mind to and I’ve told her that if she is worried about being tired or sleepy or sick – she can just stay in bed! We will hold the fort down and she has nothing to worry about! I even offered to shave my head as she was very adamant about not losing her hair .. but my having a bald head and NOT being sick doesn’t take away from her having a bald head, being sick, feeling awful, and looking in the mirror .. I get that – but the support is there from all of us …. For now, she is foregoing treatment. I hope and pray her body can fight this off – but I am scared.
Thank you ALL for your thoughts and comments. I am hoping my mother will be one of the lucky ones that this cancer is GONE and stays away – we can only hope and pray ….
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thecruisemermaid,
Thanks for updating us. I will repeat that it is likely considered unethical to conduct a formal research based study on patients who refuse treatment. Sitting around and observing the course of untreated disease is highly problematic. You may be able to find anecdotes but consider the ethical problems involved in anything more formal.
Mostly I want to thank you for stating you will honor your mothers wishes. As much as you love her, medical decisions are ultimately hers and hers alone. Take care
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thecruisemermaid,
I went through this with my mom who decided not to prolong the process with treatments. She was dx when she was 70 & passed away in 2017, a month after turning 80. She had a hormone driven bc, had mastectomy & treatment with a hormone blocking pill for 5 yrs. Dr. took her off the pill after 5 yrs. & her bc came back everywhere. These days they recommend staying on the pill for 10 yrs. & I feel like she might still be here if the doc had kept her on it. I respected my mom's wishes to refuse tx even though I wanted her around forever! It should always be a choice for the person going through it. In 2019, my dad made the choice to stop kidney dialysis. He was 84 & I respected his wishes as well. It had been very difficult for him to live without my mom as they had been married for 65 yrs! I was fortunate enough to be with both of my parents until the very end, they were in home hospice & even though I lived around the corner from them, I stayed at their home 24/7. Fast forward to Aug., 2022 & I was diagnosed with TNBC & I am 64. I did one round of chemo out of 4 & 4 radiation tx out of 21. I had a family emergency situation happen right after my first chemo tx & needed to be there for support. That was not the only reason I chose to stop tx, I had told my adult children that I would try one or two tx & then decide. I chose no more tx as I want to spend as much quality time with my 2 grandbabies as I can. My kids weren't thrilled with my decision but respected it. There are no guarantees with TN, with or without tx as it tends to become immune to chemo at some point. Mine was found early with a mammo, no node involvement & fairly small, 1.2 cm so I'm just hoping for the best. I was also diagnosed with non-hodgkin's lymphoma in 2021, fortunately, it's a slow growing cancer. I do worry a lot about back pain but I have arthritis so it's hard to know if it's that or something not so good. My doc said I've had so many scans & since my PET scan was last done last year (clear), he doesn't want to do anymore scans unless necessary. He did say if the pain persists or gets worse to let him know & he will order a scan. Best wishes to your mom & I pray for her to have many more quality years to enjoy her life! You've made the right decision to follow her wishes.
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I am happy you supported your mom in her decision making. How is your mom doing? Our mom had breast cancer, early 50s, treatable was fine. Fast forward to 76 yrs old, she was diagnosed with Triple Negative Breast stage 4 March 2023, started chemo then Keytruda...now met Liver, they now want her to choose between trodelvy or a trial eribulin sdx 7320, by next week. She is older and she suffered through these past few months, we all took turns caring for her and my dad, who has loved her dearly since she's 14. This is so hard
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