TRIPLE NEGATIVE (Age 74) Lumpectomy (twice) ONE positive sentinel node - REFUSING TREATMENT
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.
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.1
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.0
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.
Dear daughter, there are no right or wrong positions. It's admirable you are supporting your mom's wishes. Frankly, your Mother is as "old" as she feels.
Has your Mom had any PET/CT scans yet? Was your Mom not offered a bilateral mastectomy? (I had found BMX without reconstruction much easier & less painful than partial lumpectomy.) Everyone is different.
As others posted, please educate & thoroughly prepare your mother on the likely detailed expectations in NOT accepting treatments. There will be clinical consequences to your Mom's decisions & actions; hence your mother NEEDS to fully understand the details upfront. Schedule sit-down time with pathologist, BS, rad onc, MO, chemo nurse, nurse navigator and hospital patient advocate.
For example, both you & your Mom could review the BS surgical notes to gain a thorough understanding of what steps had been performed during her lumpectomies & the consequences if she does not accept radiation. (Breast tissue was likely moved around inside breast, possibly reseeding more breast with malignant cells, for example. Same thing in lymph node chain. Rads are absolutely needed for clean-up, etc )
Perhaps your Mom is keeping extra private her own serious co-morbidities so as not to worry her family? There may possibly be more to her medical history than you already know.
Medicine is imperfect, so please review the good and the bad with your Mom. There are risks in all choices (see links below).
RADIATION-INDUCED REPROGRAMMING OF BREAST CANCER CELLS
RADIATION TREATMENT GENERATES CANCER STEM CELLS FROM LESS AGGRESSIVE BREAST CANCER CELLS, STUDY SUGGESTS
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.0
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.0
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. I0