Refusing Chemo or hormonal treatments

sickandtired · May 2013

Hi Everyone,

Well I haven't been out here in a while. Here is my story. Back in late 1989 I was diagnosed with Stage IIA Hodgkin's Disease now called Lymphoma. I began chemo and radiation early 1990 at the age of 32 and for years have had constant chest infections such as acute bronchitis, pneumonia, shortness of breath if I exert myself too much and profuse sweating if out in the heat. I have suffered long term memory loss as well as extreme fatigue for the past 23 years.

In early February I discovered a lump on my left breast, approximately 2 inches away from the radiation tattoo from the previous radiation. I went for an ultrasound, mammogram and then had a core biopsy done. The results showed Invasive Ductal Carcinoma and I was bluntly told by the surgeon that this happens years after the treatment that I endured which to say the least was brutal. Went through an early menopause at 33 and the entire thing just ruined my life as I was not able to have kids. Should have had them in my 20's but that didn't happen.

To make a long story shorter, the surgeon said I am not a good candidate for radiation as I've had way to much so she insisted on a mastectomy which I refused and had a lumpectomy instead just to get that "thing" out of me. I also refused the Sentinal Node Biopsy as she told me if she could not find it, she'd have to remove several lymph nodes from my armpit! A fried of mine had this done and the arm and hand on the side done are permanently swelled up like a balloon and this is a chronic condition.

Has anyone out there had Stage 2 (the surgeon is guessing on that) and had a lumpectomy with a long term remission??

I really would rather die than to go through Chemo and toxic drugs again. Please let me know as I am ready to end this on my own. Thank you for listening!

sickandtired · May 2013

One more thing I forgot to add - Has anyone out there used alternative treatments such as Frankinscense oils etc.

Thank you

M360 · May 2013

sickandtired, I so understand. I was looking for other women who decided enough is enough. I too have been sick for over 25 years with Lupus, Arthritis, Unknown connective tissue disease this is just the tip of the iceberg. I have had over 32 surgeries. In 2009 I had Stage II, I had the mastectomy, and the lymph gland removal and I like your friend suffer with a balloon arm and fingers and pain and daily lymph massage needed and wearing of Jobe arm and glove. I didn't want to treat then and was kept on chemo and hormone therapy for the next three years and then started to have lung pain and the cancer had moved to my lungs and then my spinal cord and my right hip and femur. They changed me to Faslodex and had major side effects and so they added Cytoxan it took over six months now to just get my tumor markers stable. However I have loss control of my bowels and vomit daily even with Zofran and Compazines. They told me that I'll never be cancer free and because of health problems I too cannot take radiation, so it's only surgery and chemo. They did surgery on my left lung in January which was seven hours long. Then five new tumors in my lungs after surgery. Pain daily in spine and I cannot exercise on my large exercise balls, ride a bicycle, or horseback riding, no more golf, amusement parks etc., they tell me one wrong move and my spine could fracture. I kept treatment up for my children but now I feel it's even too much for them. I want to go out with dignity. I can't see myself in treatment for the next ten years of more, wearing diapers, limited to doing so little. Is this life. That is the question I'm asking myself too.

I see the doctors in two weeks, by the way my Oncologist is leaving so it's starting all over again with someone new. I just don't have the energy anymore. I'm told if I stop everything I'll have a year or maybe more because I eat well and take care of myself. I feel it's time to stop all and let life take it's course and I'm at peace with my decision. I've spoken with Symptom Management Doctors, Decision Doctors, and a Oncology Therapist and Spiritual Counseling. They all agree that they don't know if they could have gone through all the surgeries and things I have and still be fighting. It's that inside voice that tells you in the middle of the night while you're over the toilet that I ask myself this is enough already. I don't do pain meds but biofeedback and sound therapy with Dr. Andrew Weil's tape Sound Body Sound Mind. It is okay to say enough. That is each individuals personal choice and I don't think you or I or anyone else should be judged for such. Every person has their own purpose and season of change and choice. I choose today that I no longer want to do hormone therapy and chemo. I can't be cured only life extended for awhile. I want to go out my way. And you too have the choice to choose your way to treat or not treat. You must do what's best for you and your way of life. I wish you the best and be strong and good luck with whatever you decide.

M360 · May 2013

Yes I have used such. It didn't help my cancer but it was so relaxing and comforting. I also did other oils and herbs. I kind of look at what Steve Jobs said to his best friend who had cancer. Do all that you can do in the beginning and if they don't work try alternatives. If I had done so I would not be where I am today, which was the last months of his life. His friend listened to Steve's advice and did chemo, radiation and surgery and is cancer free today living life to the fullest. Who knows if that would have worked for him? I find that all of us are different and we need to take the path that's best for us, and listen to our own voice.

sickandtired · May 2013

I am so sorry to hear of how much you have been through over the last several years. Your story is heartbreaking and you are a very brave woman to have put up with all the surgeries, pain, etc. etc.

If this was my first time being diagnosed, I might have considered going through more treatment but enough is enough. I will be 56 in July, single, never married was made redundant in a good job in July 2010. Since then I have had 4 crappy, temporary jobs and then laid off again in January 2013. My employment insurance has exhausted, I have no drug plan and have been living off my measly savings which are dwindling. I also am the primary caregiver for my 89 year old mother who has dementia.

Yet the surgeon insists that I see oncology just to hear them out. Like I stated, there is no way that I am going through chemo again but will attend the appointment to please the surgeon and to keep on good terms with her as who knows, I may need her again in the future and she's the best surgeon in this area.

You have been through so much as well and I thank you for your comments about an individual's decision. My so called family, brother and sister-in-law are so furious with me right now. They told other people about me who told other people and I wanted to keep this private and am just furious right now as we had a major blowout about me not accepting treatment.

I will keep you in my thoughts and prayers and wish you all the very best.

Sorry for venting but this forum is my only outlet.

Sincerely,

Sickandtired,

St. Catharines, Ontario

sickandtired · May 2013

Thank you for your advise, very much appreciated.

Anonymous · May 2013

I am in no position to address your situation, and really hope that I never will be, but I want to say to you:

For most, life is precious. It is a gift from God that we are grateful for. However, for you, it sounds like there is little in life that is precious anymore. Only you know when it is time to stop treatments. Remind your family that stopping treatment isn't the same as giving up. Listen to your doctors, listen to your heart, and make up your own mind. Sickandtired: I agree with your surgeon that you should see the oncologist. Consider it a second opinion. Maybe the new doctor will have a different take on treatment. Maybe he/she will have good advice on how to improve your quality of life. You never really know what they might suggest, and it won't hurt to just listen and try to have an open mind. Keep in mind that your family is angry because they love you and don't want to lose you. Again, remind them that you are not giving up: you are trying to improve your quality of life for the time you have left here on earth, whether it be days, months, or years.

Finally, listen to what you say to them, and DON'T GIVE UP! Have faith that God is watching over you and tht what is meant to be, will be. If your heart says no more treatment, that's OK. But try to live life to the fullest. (Maybe no chemo/surgery/rads is the way to do that!!)?

Take care, and know that I am thinking about both of you. Be strong and do what's best for you.

bluepearl · May 2013

My girlfriend had stage 2 and lumpectomy and NO further treatment, no chemo, rads or hormones. She is doing well in her 6th year, no cancer. She also had one node +!!!! So, it is possible. The chemo for lymphoma is more brutal than that for breast cancer...at least this is what people I know who have gone thru both. You may not have to end your life by ending the treatment. Many people survive without adjuvant treatment if it hasn't gone beyond the breast. I agree with M360. Sometimes, most times, people get to a place where enough IS enough. Dying is a journey we all must take and when life no longer has meaning other than trying to survive another day, then I think it is ok to let go. Letting go doesn't mean giving up in my book. It means accepting the reality that you are not going to get better and that being in denial about that can extend suffering and there is nothing redeeming about suffering, especially when there is no hope of going into death without it. And what is death, anyway? A door we walk through into something else unknown and people who have NDE's say it is a refief and peaceful and loving.

Traii · May 2013

Sickandtired,

I know EXACTLY how you are feeling.

I was dx in 1995, on my 18th Birthday with Hodgkins Disease. I am here too because of mantle radiation!!

I had chemo, relapsed, chemo, stem cell transplant then more chemo and rads. It gave me a good 17 years cancer free, got married, had my son whom is now 3.

Aug last year I found a lump....and when I was told it was BC well as all of us can imagine I was in complete devastation.

But I just had to fight....I bet hodgkins...the poisons from back then got me this far and I wasnt going to be beaten by this..so I put on my big girlie pants and told the onc lets do this!!!

I had 3 treatments of Taxotere which did knock me about physically and mentally then there was CMF..that was a walk in the park for me I still worked, raised a 3 year old active little boy and maintained a house hold for my son and husband.

I know the words chemo for you is scary because you've been there, done that...but look, you're still here today because you fought hard and won. I can see it again you winning this BC battle...you're mum, family and friends need you here for a long time. You are still young. Yes you've had your fair share the horrid c, your job scenario is crap but i can tell in your tone you are a fighter!!

I hope you have met with your oncologist and listened to what he/she had to say to help confirm your decision.

Good Luck hun and keep us posted.

Sending you hugs from Australia :-)

HLB · May 2013

Hi sickandtired. You have been through a lot of hell and I can see why you don't want to do chemo! If you are stage 2 chances are that the treatment you already had could be all you need. I had stage 2 in 2004 and then chemo, which I kind of screwed up by quitting after 3 treatments and the got scared and did finish but there were 5 weeks in between the 3 and 4 treatment. I refused hormonal therapy. Yesn the hormones and chemo can help to delay and maybe prevent a recurrence, but you are certainly not destined to get a recurrence for sure if you don't take them. I can tell you that chemo is probably a lot easier than what you had for HD. You might want to check the alternatives for DIM. A lot of lower stage ladies are taking it instead of hormonal treatment due to the side effects and it might even improve the way you feel. Some people have no side effects on the hormonaal treatments and some have really bad ones, so you won't know unless you try one. I al taking letrozole and have no SEs at all. Good luck and do whatever feels right to you.

NormaJean65 · June 2013

Hi sickandtired. You certainly have been on a very long journey and see that you have been faithful & strong. I won't even bore you with my journey w/ BC except I made the decision after going through chemo, Herception, and trying Als but now on Tamo that I no longer wanted tumor markers run on me b/c I was NOT going back through anymore "torture". The doctors did all they could, I did my part including additional surgeries I chose to do, and the rest is in God's hands. I only have my DH, daughter and most of all my grandson who is now old enough to remember me & the love we have share. Just remember this...........God doesn't let us die one minute sooner nor one minute later than He has planned.

It is your body and your life.......don't let anyone make you feel guilty for choices you make. Hang in there & know prayers are being said for you.

edwards750 · June 2013

OMG sickandtired I am so sorry you suffered and are still suffering so much. I dont know how you have managed it this long. All of us are praying and pulling for you no matter what you decide to do and of course it is your life and your decision. I know your family understands you are in agony but I know they also want you around for a long, long time. This is such a cruel disease and one we have practically zero control over. Obviously none of us asked for this but we are stuck with it nonetheless. You deserve a quality of life and only you can decide what that needs to be. I told my husband if my health came down to a nursing home and just keeping me comfortable than its time for me. Ditto for me with the diapers. It was so humiliating for my father. The least we should be able to do is die with dignity. If you are at peace with your decision than I hope that decision gives you some peace, finally. diane

msphil · June 2013

hi sweetie, I was stage2, and opted for chemo and rads and L mast instead of lumpectomy I was thinking bout lumpectomy for I was in the process of getting married and didn,t want to go into marriage with one breast, But my husband and I decided I should go for what would give me the longest survival rate, and Praise GOD I am now 19 yr SURVIVAL.msphil(idc,stage2, 3 nodes, L mast, chemo:cytoxin, adriamycin,5fu, rads and 5 yrs on Tamoxifen.

Denise-G · June 2013

Sickandtired...I am so very sorry that you have had to go through so much. It is not fair, but life isn't.

One thing no one has mentioned is that pre-chemo drugs are better these days than they were in 1990.

My brother-in-law went through treatment for Hodgkins Lymphoma in 1980 at age 17. He got drugs that were used to poison the enemy in WWII. All he got for anti-nausea drugs was a Jolly Rancher's hard candy. To this day if he sees a Jolly Rancher candy, he will start gagging. He went through hell and back. I cry thinking about it because I never GOT IT until I went through cancer treatment.

So I know this is some of what you had to endure. That being said, when he and I were sharing war stories, my 5 months of chemo was so much easier than his because of the newer meds.

I pray you make the right decision for you ..sending you a hug. By the way, I just turned 57, have no kids and take care of my elderly mom. I write a breast cancer blog to help other women going through all of this horror. It has brought new meaning to my life.

DocBabs · June 2013

Sickandtired. I have several friends that have had Hodgkins in the past and yes, now they have breast cancer.Each one is alive and well and yes, they all had mastectomies.some had some form of chemo and all had their nodes biopsied. NONE of them have lymphedema. I know chemo is no party but why in the world would you not do everything possible to live a full life.I don't know your exact age but I imagine you to be somewhere in your late forties or early 50's.You have a lot of life in front of you.Chemo today is a lot different from years ago.Still not a party, but more maneagable. How do you know that you even need it if you won't let them test your nodes??? Sometimes in life you just gotta put on your big girl panties and do what you gotta do.Don't shortchange yourself.

Refusing Chemo or hormonal treatments

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