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Refusing treatment

People take treatment decisions on the basis of their personal perspectives as much as the medical pros and cons. Doctors need to be able to deal with this.

by Moshe Frenkel

This article was first published in The Oncologist vol. 18 no.5, and is republished with permission. © 2013 AlphaMed Press. doi:10.1634/theoncologist.2012-0436

In the late 1990s, I was working as a family physician. During that time, I was integrating complementary therapies into routine practice in family medicine, as well as being involved in academic work and teaching family physicians and residents. Even with a very open mind toward complementary therapies, when it came to patients affected by cancer, I strongly advocated that these therapies should not be used as an alternative to conventional treatment, but rather as complementary approaches with a single goal of improving patients’ well-being and quality of life.

During my years of consulting cancer patients and families, I noticed an increasing number of patients who declined conventional cancer treatment, a phenomenon that piqued my curiosity but somehow was not acknowledged by my colleagues, other than to mention that they had another “difficult patient”. One of these patients was Suzanna.

Suzanna, who was born in England and emigrated to Israel in her late teens, was an attractive divorcee in her mid-40s. She had been working as a complementary practitioner for many years. When she entered the room, you could not ignore her presence: she is tall with dark long hair, piercing green eyes, and a smile that warms your heart. But one day in 1997, she found a 3-cm lump in her left breast that extended to the skin. From that moment, her life turned upside down. A quick process of evaluation including mammography, ultrasonography and biopsy confirmed the diagnosis to be infiltrating ductal carcinoma. At that time, assessments of hormone receptor status or other prognostic factors were not available.

At first, like most people, Suzanna was shocked and devastated by the diagnosis. She underwent surgical excision, which confirmed advanced disease (stage IIIB) with six of eight affected axillary glands, and she was advised to begin chemotherapy as soon as possible. She came to me distressed and ambivalent about undergoing chemotherapy. During our prolonged and charged discussion, she suddenly asked me a question I had never heard from any of my patients. She asked me to look through the medical literature and determine her chances for recovery if she received chemotherapy. With my limited knowledge of oncology at the time, I assumed that the survival rate would be around 80%.

After consulting the literature, however, I was surprised to find that, given her advanced disease stage and the chemotherapeutic agents available at that time, her chances for survival would be only 32%.

When I shared this bad news with her, she didn’t seem too upset. In fact, she asked me to do her another favour: to search the medical literature again and see what her chances for survival would be without chemotherapy. With both sadness and conviction, I told her, “You will die.” Still, she urged me not to jump to conclusions, but to take a second look.

So, I dove into the research once more. To my surprise, during that time, when the Internet and PubMed were relatively new, finding the answer to her question in the current medical literature was not easy.

Finally, after spending a few hours in the local medical library, I unearthed a relevant article that estimated the survival rate of women with diseases at the same stage who did not receive chemotherapy. It was 26%.

At that point, Suzanna firmly said: “Look, chemotherapy would add only 6% to my survival rate. But I would lose my hair, which is so precious to me, it would affect my social interactions, and I would suffer nausea and vomiting. In fact, the oncologist gave me a list of side-effects two pages long! I’ve decided that I am willing to risk losing the theoretical 6% advantage chemotherapy would give me. Chemo would destroy my quality of life. I am not doing it.”

I was taken aback by her cold calculations. I told her she was making a great mistake, and I tried to change her mind. Not even the persistence of her oncologist and repeated calls from various clinic staff convinced Suzanna that she should change her mind. Her oncologist, an experienced physician, was puzzled by her decision and informed her that she had six months to live if she did not follow his treatment recommendations, and if that was her decision, there was no reason for her to continue to see him. Nonetheless, she decided against chemotherapy and began trying a wide variety of alternative and complementary therapies that she heard about from other cancer patients.

Close to 15 years have passed, and this issue of patients refusing conventional therapy still concerns me deeply. What is the actual extent and incidence of this experience? What is the best approach to address this issue? How should we confront the issue of a patient who makes an informed decision to decline therapy that we feel might be beneficial? Should we close the door on the continued care and follow-up of these patients?

Although the refusal of cancer treatment is a serious concern and has been shown to reduce the effectiveness of treatment and decrease survival duration after diagnosis[1,2], the phenomenon itself has been scarcely studied. The number of patients who make this decision is not very well known, but the number appears substantial enough to warrant close attention[3]. Studies have reported rates of less than 1% for patients who refused all conventional treatment[4] and 3–19% for patients who refused chemotherapy partially or completely[5–9].

We tend to think that refusing therapy leads to a poorer quality of life as the disease progresses without treatment. Interestingly, that might not be the case.

A study that evaluated the quality of life of 140 cancer patients who had refused, discontinued, or completed chemotherapy revealed that the quality of life of patients who refused or discontinued chemotherapy was no different than that of patients who completed treatment[10].

In my interactions with patients who seek advice about complementary therapy options, I occasionally meet patients who have actually decided to decline treatment. Some have shared their decision process to refuse treatment, partially or completely, but most have not shared this decision with their treating physician. More commonly, during their search for second or third opinions, patients do not return to any of their original physicians for treatment and are lost to follow-up. Patients are looking for a physician to share their decision with a trusted professional who is willing to listen to their account of their painful journey. When they share their rationale for refusing conventional treatment, they mention multiple reasons, such as fear of adverse side-effects of cancer treatment (particularly chemotherapy), uncertainty about treatment effectiveness, hopelessness, helplessness, loss of control, denial (about their illness), psychiatric disorders, dysfunction in the health care system, and, above all, issues surrounding communication and the patient–physician relationship[4,11–18].

Patients are often aware of the serious side-effects and complications that are likely to accompany conventional therapies, and some have witnessed the ultimate futility of such interventions. They weigh the evidence and often make choices that reflect their underlying values and beliefs rather than rely on medical evidence or advice as the determining factor. Nonetheless, these patients keep their medical appointments and seek reassurance that they will not be abandoned, that when needed, palliative care services would be available to them, and that they would not die in pain, but with dignity and have some control over the end of their life. In the meantime, they focus on living in the present, keeping to their usual schedules and routines, working, presiding over family gatherings, and seeking support and affirmation from close family and friends[16].

The unique patients who refuse conventional treatment are at times self-directed, confident, and active, and have thought deeply about the meaning of life and cancer and about their cancer treatment options.

It may not always be easy for clinicians to deal with these types of patients as they deviate from the norm and challenge current evidence[3]. Physician response is not always supportive of these decisions that patients make. Although physicians understand that patients have the right to decide about their treatment and recognise the possibility of an in-between phase when treatment effects and outcomes are far less predictable, physicians nevertheless tend to categorise their patients dichotomously: those who can be cured and those for whom a cure is no longer possible18. Patients who fall into the former category and refuse conventional treatment are considered “difficult patients” or “noncompliant.”

Current evidence suggests that healthcare professionals often feel uncomfortable, troubled, and even distressed when dealing with patients who make decisions that go against medical advice. In such situations, communication between patients and the healthcare team can become strained, impacting on future contact and quality of therapeutic interaction[16]. In a recent qualitative study on women who refuse conventional treatment, and reflect back to their experience, they mention that a better first experience with their physicians might have made a difference in the treatment path they ultimately chose. They said that they would have been more likely to accept conventional treatment earlier had they felt that they had caring physicians who acknowledged their fears, communicated hope, educated them about treatment possibilities, and allowed them time to adjust to their diagnosis and assimilate information before starting treatment[17].

This experience with Suzanna made me aware that the communication between the patient and the physician must integrate the medical balancing of pros and cons of treatment effectiveness with the patient’s personal perspective. It seems with the current trend of ‘patient-centred care’ that there is a need to get a better insight into the role that the patient’s view of life, their values, and personal judgements play in the decision-making process. In addition, an approach that uses effective communication with these patients and integrates their values with current medical evidence is needed.

Communication is crucial in establishing trust with patients, gathering information, addressing patient emotions, and assisting patients in decisions about care[19–21]. The quality of communication in cancer care has been shown to affect patient satisfaction, decision making, patient distress and well-being, compliance, and even malpractice litigation[2
2,23]. Treatment decision making is an ongoing process; thus, patients who initially refuse treatment may later choose to undergo conventional cancer treatment if given the adequate support, information and time necessary to make the decision. Even if patients have declined oncologic care, they may continue to see their primary care providers and family physicians. Patients need to feel that they have not been permanently excluded from the healthcare system even if they make choices that are contrary to the recommendations of their medical team[24].

As to Suzanna, to my initial astonishment, she thrived. In 2007, she published a book with an inspiring title: Six Months to Live, Ten Years Later[25]. She became a daily reminder for me that there are exceptional patients, and refusing treatment is only the tip of the iceberg and presents a major challenge that needs to be addressed.

Acknowledgements
The author thanks Suzanna Marcus for sharing her unusual story so that physicians and patients can benefit from her experience.

Author affiliation
Moshe Frenkel is affiliated to the Department of Family Medicine, at the University of Texas Medical Branch at Galveston, the Integrative Medicine Program at the University of Texas MD Anderson Cancer Center, Houston, and the Integrative Oncology Service at the Institute of Oncology, Meir Medical Center, Kfar Saba, Israel

References
1. Han E, Johnson N, Delamelena T et al. Alternative therapy used as primary treatment for breast cancer negatively impacts outcomes. Ann Surg Oncol 2011;18:912–916.

2. Li BD, Brown WA, Ampil FL et al. Patient compliance is critical for equivalent clinical outcomes for breast cancer treated by breast-conservation therapy. Ann Surg 2000;231:883–889.

3. Verhoef MJ, Rose MS, White M et al. Declining conventional cancer treatment and using complementary and alternative medicine: A problem or a challenge? Curr Oncol 2008;15(suppl2):s101–s106.

4. Huchcroft SA, Snodgrass T. Cancer patients who refuse treatment. Cancer Causes Control 1993;4: 179–185.

5. Puts MT, Monette J, Girre V et al. Characteristics of older newly diagnosed cancer patients refusing cancer treatments. Support Care Cancer 2010;18: 969–974.

6. Levin M, Mermelstein H, Rigberg C. Factors associated with acceptance or rejection of recommendation for chemotherapy in a community cancer center. Cancer Nurs1999;22:246–250.

7. Cassileth BR, Lusk EJ, Strouse TB et al. Contemporary unorthodox treatments in cancer medicine. Ann Intern Med1984;101:105–112.

8. Simmons K, Lindsay S. Psychological influences on acceptance of postsurgical treatment in cancer patients. J Psychosom Res 2001;51:355–360.

9. Velanovich V, Gabel M, Walker E Metal. Causes for the undertreatment of elderly breast cancer patients: Tailoring treatments to individual patients. J Am Coll Surg 2002;194:8–13.

10. Gilbar O. The quality of life of cancer patients who refuse chemotherapy. Soc Sci Med 1991;32: 1337–1340.

11. Levin M,Mermelstein H, Rigberg C.Factors associated with acceptance or rejection of recommendation for chemotherapy in a community cancer center. Cancer Nurs1999;22:246–250.

12. Richardson JL, Sanchez K. Compliance with cancer treatment. In: Holland JC, ed. Psycho oncology. New York, NY: Oxford University Press. 1998: 67–77.

13. Kunkel E J, Woods C M, Rodgers C et al. Consultations for “maladaptive denial of illness” in patients with cancer: Psychiatric disorders that result in non compliance. Psycho oncology 1997;6:139– 149.

14. Goldberg R J. Systematic understanding of cancer patients who refuse treatment. Psychother Psychosom 1983;39:180–189.

15. Appelbaum PS, Roth LH. Patients who refuse treatment in medical hospitals. JAMA 1983;250: 1296–1301.

16. Kacen L, Madjar I, Denham J et al. Patients deciding to forgo or stop active treatment for cancer. Eur J Palliat Care 2005;12:113–116.

17. Citrin DL, Bloom DL, Grutsch JF et al. Beliefs and perceptions of women with newly diagnosed breast cancer who refused conventional treatment in favor of alternative therapies. The Oncologist 2012;17:607–612.

18 Madjar I, Kacen L, Ariad S et al. Telling their stories, telling our stories: Physicians’ experiences with patients who decide to forgo or stop treatment for cancer. Qual Health Res 2007;17: 428–441.

19. Epstein RM, Street RL Jr. Patient-centered communication in cancer care: Promoting healing and reducing suffering. NIH Publication No. 07– 6225, Bethesda, MD: National Cancer Institute, 2007.

20. Institute of Medicine. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs.Washington, DC:National Academies Press, 2007.

21. Pincus HA, Patel SR. Barriers to the delivery of psychosocial care for cancer patients: Bridging mind and body. J Clin Oncol 2009;27:661–662.

22. Frenkel M, Ben-Arye E, Cohen L. Communication in cancer care: Discussing complementary and alternative medicine. Integr Cancer Ther 2010;9: 177–185.

23. Frenkel M. Components of a successful integrative medicine clinical consultation. J Soc Integr Oncol 2008;6:129–133.

24. Shumay DM, Maskarinec G, Kakai H et al. Cancer Research Center of Hawaii. Why some cancer patients choose complementary and alternative medicine instead of conventional treatment. J Fam Pract 2001;50:1067.

25. Marcus S. Six Months to Live, Ten Years Later. Israel: Open Doorway Press, 2007.
complete article
COMMENTS (23)
66 year old with simple atypical hyperplasia says: 12 February 2014 17:12:04
Finally, someone has wirtten and realizes the emotions patients with Cancer, or suspected Cancer can experience! Being given no information from my UK GP, Hospital Gynaecologist and Gynaecological Oncologist I have had to resort to reading recognised Cancer sites on the Internet in order to gain some understanding. My age is 66, I have CAD, Pulmonary & Systemic Hyperplasia & BMI is 45, as such hospital have treated me Conservatively. In 2013 had 3 Hysteroscopys, during 2nd (August 2013) large uterine polyp removed, Endometrium Sample showed: SIMPLE ATYPICAL HYPRERPLASIA. At 3rd Hysteroscopy curettage showed no evidence of any Atypia, but slight thickening at 7 o'clock (which had not shown up on Ultrasound in November). This small projection of benign looking tissue was generally avulsed, and at Histology stated - "multiple endometrial fragments, one of which has attached Myometrial Tissue". The endometrial glands are relatively sparse and inactive looking while the stroma is markedly pseudodecidualised. These features would be in keeping with progestational effects on the Endometrium and consistent with the Mirena in situ and exogenous hormonal therapy. No evidence of Endometrial Hyperplasia, Atypia or Malignancy is seen". There are also no obvious histological features suggestive of chronic endometritis". No verbal explanation, or alternatives have been discussed with me by the hospital since my 1st Hysteroscopy. They inserted Myrena Coil at 2nd Hysteroscopy, then 2 months later prescribed 1x/day 100mg Provera after which I experienced abdominal pain, racing heart, breathlessness,dizzyness, etc. Own GP, and no one at the hospital took any notice of my stating the severe side-effects, so after 2 months I quit taking the Provera. 2nd Myrena Coil inserted at 3rd Hysteroscopy December 2013, since then had spotting, and daily abdominal pain. I am insisting Myrena be removed 24-2-14 as Health Professionals have not answered questions when I've asked, and never talked to me as to what options etc were available. I have now decided to refuse any further tests, or treatments regardless of the consequences, as I feel this is the only control of my life that I will have. I'm totally disgusted with the apparent total lack of understanding by so-called professionals re the emotions worried patients go through. Will now take my chance and only ask for pain relief as I'm sure full Womb Cancer will probably develop.
Candace Sturtevant says: 25 March 2014 05:35:22
" Microcalcifications These are tiny calcium deposits that show up as fine white specks on a mammogram. They are usually found in an area of the breast where cells are being replaced more quickly than normal. Microcalcifications are not usually due to cancer. But sometimes a group of microcalcifications seen together in one area (a cluster) may be a sign of pre-cancerous changes or early breast cancer. " I have been told I have these on my right breast, and need a further mammogram to rule out cancer. In my opinion, no one is going to "cut my breast off". My breasts are a part of me, and I should have the right to die of breast cancer, if I so chose to. I know you may think I am stupid; especially since, I have been a nurse for 27 years. However, it is my body, and the thought of losing one of my breasts is just too much to handle, I feel.
says: 30 March 2014 16:16:14
Very nice! bkkebgeccd
says: 31 March 2014 11:02:44
Very nice site!
Paul Picard says: 04 April 2014 16:46:56
Hello, I really had very minimal trouble with learning that I had aggressive prostate cancer with extensive bone metastasis all over my body. I had just survived a cold winter night with wet clothing and lost in the mountains where I was not sure that I would make it. I have to admit that I even enjoyed reading a few good books on the topic and doing extensive researches to educate myself on the this topic. It is weird how I feel at peace with myself. The only time that I can feel some tension and some uneasiness building inside me is when I try to go through the administrative hurdles towards eventually getting some kind of therapy. These administrative hurdles have a life of their own that defies any logic. I can't see living my last few months giving most of energy at dealing with that monster (not the cancer). After a month of knowing that I have an aggressive cancer with extensive metastatis, I still have not seen an oncologist. When I see that doctor I will listen and see how he explains the situation, what are the various options with well explained pros and cons, what additional information would he like before proceeding further. However as it stands now, I am planning to refuse any treatment. I can't stand fighting bureaucracy every time that I might need to fine tune my treatment. Regards, Paul Picard
sana T.Ahmad says: 29 April 2014 20:46:37
really it is very important web.sit for our professional/health
Rayne says: 09 May 2014 04:53:32
I was diagnosed with breast cancer 14 years ago and have been working with alternative therapies refusing all conventional treatment. I am alive and well and do not believe it when they tell you that conventional treatments extend your life. They will more than likely kill you very quickly. Educate yourselves and don't fall prey to the cancer industry. It's big business and they will try and suppress and discredit all the competition. i am living proof that alternatives do work!
Cancer World Editorial Team says: 09 May 2014 16:14:57
Good to hear Rayne is still well. However this article doesn't question evidence-based medicine, it is about the choices people make
Paul Picard says: 09 May 2014 18:25:37
I downloaded the pdf file for this excellent article. However some crucial information is not included in that pdf file: all the supporting references. PPicard
Caroline H. says: 24 June 2014 11:44:45
I googled "people who refuse treatment for breast cancer" to get here. Glad I did. I also refuse to tell anybody who has no immediate need to know. That will come when I'm sure the end is near. I decided long ago that I wouldn't have any part of conventional cancer treatment. I went for a diagnostic mammogram and biopsy because I wanted to cover myself by appearing cooperative, in case I change my mind someday. Forget the scan. I'm not curious and I doubt I'll miss the end by not having it forecast for me. I can't see wasting money, even if it is the insurance company's money. I have some thoughts for physicians and technicians who deal with cancer patients. Cancer treatment is lucrative, so I think it draws inappropriate people - people who buy into the cancer terror syndrome* themselves and feel sick at the thought of conventional treatment. They should be advised to grow up or shoot Botox for a living. They should understand what mature professional detachment really means: they're paid for informed opinions, not for decisions. *That's propoganda for collecting donations.
Mary says: 18 July 2014 04:18:25
It's been 4 years since having a mastectomy, but I refused the chemo and drugs. I've been having a lot of trouble trying to find any research or statistics on people have refused chemo and survival rates. I've managed to meet people who have made the same choice as I have, but can't find any official research. Does anyone know if any studies have been done?
Rayne says: 18 July 2014 04:42:17
Glad to hear from other independent logical thinking people about their choices. I doubt there is any research done on survivors who chose alternative treatment or at least refused conventional. The medical establishment and the AMA would discredit any studies like that if they existed. You are right, it is too lucrative to continue on with things the way they are. Lots of people to bring in to the system to keep the wheels grinding on. THey tried to scare me to death but instead I gathered my wits together and survived without them, without surgery, without any conventional interference. 14 years later I am out gardening, swimming, working, playing and living at 53.
June says: 24 August 2014 19:34:43
"Should we close the door on the continued care and follow-up of these patients?" Seems you did. Did you ask Suzanne to keep in touch. What happened to her? A general surgeon wanted to do a surgical biopsy on my breast after the sterotactic (sp?) biopsy came back negative on a few dots of calcifications that showed in the mammogram. Her reason? So I would not come back later and complain that I wasn't given proper care. So she was trying to protect her own record. She didn't care anything about me as a person with real emotions. We are OVER-screened here. I'm 53 and I'm undergoing mammograms every few months. I have had enough! A second sterobiopsy will be scheduled, but then I am THROUGH with all these screenings. I am healthy. I will soon stop trying to prove this to the medical community, as soon as the results of the second biopsy come back.
Rayne says: 24 August 2014 21:08:45
June, I understand your frustration. I am not into being tested or prodded or poked or having my breast smashed. I vowed never to have another mammogram after my first one due to the callous way it was performed by the practitioner. I believe it is what caused my encapsulated tumor to break open and spread because I had the lump for a year before I got a mammogram and it never grew. After the mammogram which they did twice in one visit because the first one didn't show anything it began to grow pretty rapidly. The technician told me that the first mammogram was inconclusive and said they had to do another one and very coldly she looked me in the eye and said,"This time it's going to hurt!" It did. I screamed. I was already tender and they could have just felt it to see that there was something there. They told me I had cancer and were ready to schedule me for a biopsy and surgery based only on the second mammogram. I believe that biopsies spread cancer so I never agreed to one. It seems that the more insurance you have the more they want to test. Medical care seems mostly about testing and prescribing drugs. I am not against doctors and I know they save lives but the system as it is set up is barbaric and mostly about profit, just like everything else in this. We have to take our lives into our own hands and do independent research into alternatives because the medical establishment only knows what they are taught and they are not taught to look into other methods of healing.
Farhat says: 02 October 2014 10:24:09
Please write your comment here Rayne should mention the methods and herbs or what ever she took to cure her for the benefit of other patients. she survived so many years, it may be a lesson for many others. i request her to educate people on her experiences about different therapies.
Caroline says: 07 October 2014 05:24:01
My tumor was tiny for the year and a half between the time I discovered it and the time I had the biopsy. I also know that piercing a tumor and then removing the needle spreads cells from the tumor. I mentioned it to the woman who did the biopsy and somehow presumed she understood that I wanted her to be careful. Fat chance! She jabbed me so hard that all the lydocaine she'd injected seemed to have no effect at all. Then she aspirated a node in my armpit violently. I've never felt such searing pain or such brute anger. She'll never know how close she came to being slapped. In retrospect, I think she was probably a per diem and I might have been the first biopsy she'd done in a while. I have contempt for her and the radiology practice who turned her loose on me. Four months later, I can feel the thickening in the side of my breast and today I noticed a tiny prick, like a sliver feels, when I stretch. I think the tumor has been growing and finally pushed the titanium chip marker out of place. It's still installed because I refused the scan that is the next step in their procedure.If it creates an infection, I'll probably have to get the scan anyway, to find the marker so it can be removed. Farhat, Suzanna, the woman Dr. Frenkel mentioned, has an interesting website with ideas about diet.
Sam says: 03 December 2014 10:09:17
Very interesting article. I am currently conduction qualitative research on individuals who decline some form of conventional cancer treatment. The research is for my thesis as part of my Masters in Psychology at the University of East London in the UK. The purpose of the research is to not judge, but simply better understand individuals experiences when they do decline some form of treatment as some stage on their journey. Interviews are conducted over skype and I have a few more places available so if anyone is interested in this topic and would like to share their story, it would be great to hear from you and I can provide you with more detailed information. My university email is u1253567@uel.ac.uk or sam_eddy@hotmail.com. Thanks Sam
Marie Brunner says: 22 March 2016 06:29:49
Please write your comment here's Thank you so much for this site!!! When I first found put I had breast cancer in my left breast, which was discovered during a routine mammogram, I instantly new that I wanted a double masectomy and breast reconstruction.I needed to get rid of this cancer and knew I did not want to possibly have a recurrence years later in the right breast. I was told by my surgeon, I had stage 2 (early stage) breast cancer and no lymph nodes were involved. I am taking Tamoxofin and scheduled to start 4 treatments of chemotherapy. The more I think about i. I think am not going through with chemo, it frightens me that chemo will make me very depressed, sick and basically lose my positive personality, I have already had some episodes of anxiety and sadness, I do not want to go there. I feel I have done the most extreme type of surgery and willing to take Tamoxifin (hormone suppressor) I think that is enough !!!!
Les Mitchell says: 09 April 2016 13:39:38
I am so grateful that I found this page. I am in 100% agreement with what is being stated here. My mother was diagnosed with small cell lung cancer in 1993, underwent chemotherapy and then radiation, and all it did was give her another eighteen months, five of which found her shut up in the house with complete hair loss, unwillingness to eat, depression, frustration, etc. When the time came, I told the oncologist that I didn't want her to suffer. Fortunately she did not and she passed away peacefully on May 17, 1995. In October, 2008, my younger brother was diagnosed with squamish cell carcinoma. He underwent radiation and chemotherapy concurrently. He couldn't swallow, was experiencing side effects, and was basically miserable. After five months of this torture, he stopped treatment, and was OK ----------- for about five months. And then the cancer returned with cold revenge. Kidneys weren't functioning, his legs couldn't support him. The cancer was now in his spine. He entered the hospital in December, 2009, and suffered until February 27, 2010, when, after several treatments, all of which failed to work, he mercifully passed away. He went through hell. And more recently, I've had friends suffering from gio blastoma multiform, the most dreaded brain tumor of all. They all passed away after useless treatments. Point is this: Stand by your principles, and don't let any physician tell you what to do. Elect for palliative care and hospice. Be kept as comfortable and anxiety-free as your condition demands, and make sure you have a wonderful hospice doctor who will know what's in your heart rather than in your body. The goal is to leave this world on a luxury liner. This is my goal and I pray every day that when my time comes, this is how it will be.
Twinki33 says: 08 June 2016 22:36:39
Having just had lumpectomy and node removal (1 found cancerous) I am meeting with surgeon Friday to determine treatment. I am going to refuse chemo treatment. I know I will be unable to cope with nausea, hair loss and chemo brain. I'd rather have a short quality of life period than a longer miserable one. I pray for the strength to stand up for my rights. Thank you for this site.
Kimberle Alvarez says: 25 July 2016 00:39:06
My Mom had a tumor removed from the colon when she was 64. The hospital Dr. came in and told her and Dad it was benighn, no treatment needed. A year later at Thanksgiving her colon ruptured.Emergency surgery removed part of the colon and diagnosis was malignant. Searching back a year to her first. Benign tumor removal. The Dr. was astounded...it said malignent. ..thospital Dr. had looked at the 1st report wrong...immediate challenge mo and radiation, 2 more ruptures and surgeries...she was finally sent home with hospice home care. She died a few months later, under increasing morphine administration. I, the daughter who lost my mom,her mom,her sister and my great aunt to 4 different kinds of canver woykd oot out if treatment if I ever get cancer. The tortuous regimen and side effects for a few extra months alive are not worth it.
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