No treatments for me.
Comments
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Thank you Nicci for that lovely account of Cin's last few weeks which you posted on her blog.
I will always remember Cindy and her inspiration to all of us here. I wish you, Elaine, Rick and all her family great courage to continue on without her. It will be difficult but I know you are all a strong and close family - how often did Cindy tell us that here!. Remember always how much she was loved on these blogs and how much she will be missed.
Lots of love to you and to all the other sisters on this thread.0 -
I have lost Cindy's blog - can anyone post it or pm me? It is no longer part of her signature line, which is where I always went to in order to find it. Would love to read Nicci's post. Thinking of the whole family, hoping time is giving you all some space and healing.0 -
Linda - I'm a lurker on here. If you go to Cindy's profile you will find her blog. I'm thinking it might be there for privacy.0 -
Luvmygoats, thanks! I now have it bookmarked. I had asked Cindy a long time ago if it would be OK with her if I shared her blog with my own family as she and I had some common issues, and she said it was fine with her. I haven't done that yet, but may do so when it is my turn to follow her example. She has written so much, so eloquently, so concretely, and so much of what she wrote has reflected my own experience and thoughts, and I don't have the energy to actually figure out how to do my own blog. I am spending my energy on doing art projects, not so much writing, and so it is sort of like she has written this for several of us.
In gratitude for CindyRose.0 -
Dropping by to say Hi =0)0 -
Hello, Elaine! Nice to see you dropping by. How are you doing? I can't remember if you are still in school or if you are now working as a MT. I just got back from my MT session with a wonderful practitioner who also is a certfied LE therapist, so it was great getting the body work done, tires rotated, oil changed ... she did some marvelous work with the lymphatics, and I feel like almost human today! Have been thinking of all of you, hoping each day is less painful and more filled with the spirit of Cindy, as well as the love from all of us here.
I especially appreciated Nicci's posting on Cindy's blog.0 -
oh goodness, I realized I had not been on BCO in a while, and I just now learned Cindy is gone.
Cindy was such a sweetheart, more than that she was one of those special people that brought people on BCO together regardless of stage. She's in the "hall of fame" with Konacat and others.
Her story was remarkable and instructive.0 -
Hi Elaine and everyone else, from sunny, still hot Middle East! Was thinking about Cin yesterday when I saw bags of different colored M&Ms at the store - yes, they love them here, too! When she was first going to the doctors I met here on a thread I started for us every 6 month check up gals, the waiting and watching group. I just fell in love with her, like we all did! She was really low during the diagnosis stage and I was trying to figure out how to cheer here up. Found that on the M&M website you could create a personalized bag so I picked a few colors and mixed up M&Ms that said "Cindy" "Rose" and "Rocks!" Well, she thought that was the greatest thing in the world and I was happy that I could help somehow, even if just a tiny little bit. I know all of you have also sent cards, flowers, money, and other things but with Cin, just our mere "presence" as a group in her corner during the fight seemed to be the best gift, don't ya think?!!
Nicci's post is just fabulous. What a lovely essay.
Anyhow, I wanted to say hi while I had the chance. Ali, glad all is well there with your health and family. Linda, I still haven't started my garden, they say December is the best time to put it in, so I am procrastinating (secretly hope someone says January is better! ;-) Cookie, thanks for stopping through, you're a beam of light on these boards! Luvmygoat, Goodprognosis and everyone else, hugs and stay healthy! xo0 -
Hey Carpediem1965, my son's father is from Yemen (just south of Saudi Arabia). He lived in the mountains where it was and still is in many places remote and a little primitive. My son went there with his father when he was 12 and he said they still use a donkey to haul water to their house and the toilet is a hole in the ground. The cities are different of course. No A/C either...so yes it is very hot. I tried calling there when he was there for a month, the only phone was in the center of the village and it is only manned a few hours a day. So with the time difference, it was almost impossible to get hold of anyone. Also, most of the time the person running the phone couldn't speak English and I don't speak Arabic. May I ask where you are located? My son told me I might do okay in the city but I'd never last a day in the village. I don't like heat so I don't think I'd last a day anywhere.0 -
Hi Everyone
I have just registered and I'm really not sure how to go about this, but if I offend anyone or write the wrong thing, please let me know.
I saw my doctor on Monday, had an ultrasound on Tuesday and received my needle biopsy lab report on Wednesday (yesterday) saying "Malignant" with the differential diagnosis including sarcomatoid carcinoma, sarcomatous phyllodes tumour or pure high grade sarcoma. My doctor is a lovely lady who said she will support me with any decisions I make but has begged me to see a surgeon. I told her even before the lab results that I will refuse surgery, chemo or radiation as I have read extensively and the side effects sound worse than any benefits. (I started reading up on cancer as soon as my lump started growing as my grandmother passed away from cancer at the age of 49 and I had a strong suspicion that this was cancer.) I started reading about these weird blood test results (apparently these types of cancer make up less than 1% of all breast tumours) and found a lot of the journal articles say "poor prognosis" and "high rate of recurrence" even with surgery/chemo/radio. I just can't do it. I'm a realist and I decided when my lump first started growing that I would live the rest of whatever time I have left to the full without invasive surgery or debilitating therapies. My only problem is that I'm only 47 and my parents are in their 70s and have their own medical problems. I have NOT told them yet and don't know how to. I am terrified of causing either or both of them to have a heart attack or stroke. Please, can anyone give me any advice on how to break this to them gently? I am single without children so my parents are my only concern. My friends know my attitude to aggressive medical treatment and will accept my decision.
Best wishes to you all. Thanks.0 -
Hi, I've decided to fight with everything I have because I have a son and he needs me. However, I can't tell you to do the same thing because I'm not in your shoes. I have a recurrence, I'm not sure what I would be doing or how far I'd go if I didn't have a child. As for telling your parents, I'd probably wait until I had to tell them. I don't know how fast your tumor would grow or spread to other parts of your body. It could be quick or gradual. If it's gradual, you might not show obvious signs for quite a while. If you wait to tell them, it could mean fewer years of worrying about something they have no control over anyway. Also, by telling them they might try to pressure you to have treatments you don't want to have. Although, if you want their input, then you should tell them. Others may disagree but I personally wouldn't want to worry my 77 year old mother with thoughts of me dying any longer than I needed to. I'd spend whatever time both of us had left with love and joy not heartache. Yes, someday they might have to feel that pain but why make it longer than necessary. Of course, in the end, each of us have to make these types of decisions ourselves. I hope you find peace in whatever direction you go.0 -
Thank you so much, aaoaao. I really appreciate the reply. As you say, it may be so gradual that I don't have to tell them for years so no point in worrying them now. I wish you and your son all the very best.0 -
Dear Refusing, I understand your reluctance to undergo treatment. However, I encourage you to reconsider surgery. There is debate about the benefits of radiation and chemo, but I think all the experts agree that surgery is beneficial. I found surgery to be easier than chemo.0 -
Dear Mary
Thanks for that. I'm so glad I found this site. As you can see, I've only just been diagnosed and am totally confused. I guess going to see a surgeon is a good idea and then I'll have a better understanding of what's involved instead of just reading on the Internet. May I ask how long you were in hospital for and how long until you were back on your feet and managing just simple everyday things like cooking? (Please don't feel obliged to give any personal details you don't want to.) I live alone and worry how I will cope after surgery.0 -
hi Refusing Treatment,
First, I'm so sorry you find yourself here. Cancer sucks, plain and simple! That being said, I'm not about to tell you what's right for you. However, just something to think about..... I, too, was given a VERY poor prognosis when first diagnosed, told to get my affairs in order, it would probably be my last Christmas..... My DD (darling daughter) wasn't even 3, I was just 41 so I had to fight. That was 17 years ago! Told I had the strongest chemo at that time, it was difficult and unpleasant for about a year, then I started back to a new normal. 16 years went by, told myself at my annual mammo I was going to show myself I was ok. Big surprise when I was diagnosed with a different BC last year so this was my cancer do-ever (had bilateral recon this time with 2nd mastectomy). Do I wish I never had BC? Of course! But am so grateful I endured that year, am planning to be here for a very long time. The doctors don't have a crystal ball to see what lies ahead, so I think they often give the bleakest picture, there's no way to be exactly sure what lies ahead for you. I know initial DX is overwhelming and frightening.
And here on BCO, you get to whine, vent, cry, complain, whatever as long as it's not personally aimed at an individual. So, keep coming back because you'll find the most understanding, compassion and friendship - we're here too!
Hugs!0 -
I'd like to add that I had a bilateral mastectomy and also live alone. I had very little pain and was able to do most things for myself. The drains weren't painful, mostly just a nuisance. They get in the way and you have to empty them and track the drainage. It all depends on how extensive the surgery is...I just wanted to let you know that even with the most aggressive surgery, like I had, it was doable. I agree that just doing the surgery to remove the tumor could provide a great benefit. The removal of the tumor could even prevent it from spreading, especially if the nodes are clear. At the least, it could buy you more time. Please see the surgeon and then you can determine the level of intervention that you want. I wish you the best possible outcome.0 -
Hi Refusing,
I had a mastectomy 18 years ago. I think I was in the hospital for 2 days. At first I had a morphine pump, but after the first day, I didn't need it. I was able to take care of myself pretty well, I think. I remember that my daughter helped me wash myself at first. I had to sleep in a recliner for awhile because I couldn't get comfortable in bed. I was off work for 4 weeks, but I was able to do things around the house during a lot of that time. If you live alone, you might see about getting some help for a few days. Maybe a friend could stay with you. I really encourage you to at least see a surgeon and find out what your options are. Good luck, whatever you decide.0 -
aaoaao - good to hear that things were manageable after your surgery. Will definitely look into it further.
2nd time around - your answer has me in tears!! Yes, I am overwhelmed, but really and truly appreciate your answer. What's really terrifying me is the list at the end of each of your posts about your surgery/chemo/radio. I will just take it one step at a time and cross my fingers that as it's currently only on one side, I can have a single mastectomy and they get it all. My ultrasound showed no axillary nodes either which the sonographer said was a good sign.
thank you both. : )0 -
and thanks again Mary - yes, I have a friend who would definitely stay with me for a week or two. Sorry, brain really not in gear as I didn't consider that myself.0 -
just to add, this can be very overwhelming..... Take a deep breath, while I don't suggest ignoring your situation you have time to let it sink in, get info, and think what's best for you. Are there others who can help: doctor appts, help with food, chores.... There are strategies we have learned to cope with or ways we have to stretch ourselves to do the previously unthinkable. Yes, I'm married, but last year my DH helped me very little (yes, he took me to surgeries and a couple dr appts but little else). I learned how to adapt (must admit I probably looked funny doing some of it like laundry - putting one item at a time into washer or dryer, using my little step stool, leaving items on the counter for easier reaching) and made myself stronger: was the worlds biggest wimp, couldn't even look at drains but since I had to, would talk myself thru emptying them. Couldn't handle pain, there's meds for that, petrified of IV's but there's methods to help there. Again, please consider just checking into available options now, then decide what's best for you after you've seen the complete picture so you don't have any regrets in the future0 -
My wife had a bilateral mastectomy (modifed radical) on Wednesday. She was home Thursday evening. Friday morning she wanted to go for a walk. We walked 1 Mile in about 40 minutes. Saturday she wanted to go to a baseball spring training game...and we did.
The drains were a pain in the a** and she didn't want to drive until she was finished needing to take the pain meds.....
A couple of weeks after the surgery she was driving a bus.
Eric
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You are all absolutely wonderful. I'm going to love you and leave you now as I haven't slept for 48 hours as I've been so freaked out, and am ready to fall off my chair. You've all made me feel much MORE positive and much LESS overwhelmed with your touching replies. I will definitely log back on later. Thank you, thank you, thank you. : )0 -
RefusingTreatment, welcome to Breastcancer.org. You've received such wise and thoughtful advice from women who've "been there." If you want to read more about surgery from others' first-hand experiences, any of the monthly threads in the Surgery - Before, During and After forum will show you the day-to-day ups and downs of other members.
There's also a helpful topic with Important Links for Newbies About Surgery that may help as you consider whether to see a breast specialist/surgeon.
• The Mods0 -
Do please see the surgeon, who is the best one to fill you in on options and outcomes both if you do (and, possibly more importantly, if you do not) choose to have surgery, Truly, it is important to make an informed decision. Not all surgery is a big deal: I had a lumpectomy, chosing an afternoon procedure so I could stay overnight in the hospital, took painkillers for one day, was outside chipping ice on day four. The nice thing about a lumpectomy is the entire tumor will be removed, making a far more accurate pathology report possible. Once that report is in, your breast surgeon can give you more targeted recommendations.
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Refusing, I had the same inclination as you do, and wish I had followed my heart and not been influenced by others to accept treatment that I didn't want. I wish I had taken time THEN, while I was still strong and feeling good, to travel and do several things I wanted to do, because I have been unable to do any of those things since first treatment plan started 3 years ago. I now work VERY hard to find moments of beauty, joy, love, and peace each day. I have no good DAYS but I have many good MOMENTS each day. I find many things to be grateful for, including CindyRose, many many loving and supportive women here on BCO, and many family and friends who show me love every day, but I am NOT grateful for life itself. I stay as active as I am able, enjoy new hobbies as I can no longer work and unable to participate in my old hobbies. I have been able to spend a lot more time with my art, an I probably wouldn't be doing so much if I was working.
That being said, you need to gather as much information as you can because there are windows of opportunity for each treatment plan, depending on your tumor type and stage. Here is a VERY IMPORTANT piece of advice: DO NOT RUSH!!!! Take your time, get second opinions, understand that the numbers and statistics apply to POPULATIONS and really do not apply to any individual. For an individual, any treatment will be either 100% effective or 0% effective - either it works for you or it doesn't, but there is no way to know for sure ahead of time, so the best the docs can do is base treatment plans on averages. But you MUST invest the time and energy and do any testing NOW so that you can make your decisions based on knowledge, coupled with your personal life values,
You will find support here, without judgment, regardless of your decision. We are here because we care.
May you be free from fear, may you be loved, may you be at peace.0 -
Refusing, I had a mastectomy in the afternoon, came home the next morning. I could do almost everything but drive within a week. I think I took pain meds for 2 days max. The only other treatment I've had is hormonal and I'm lucky to have no side effects from that. Do explore all your options. You might also look to see if there's a topic for your specific type of cancer.0 -
Refusing, I know that this is a very tough time for you, waking each morning, hoping it was just a bad dream, but then coming to realize it is now a reality. Please take a few deep breaths, organize your thoughts, make sure you gather as much information as you can as you go to your appointments and wait for results. The waiting is the hardest part. You really cannot make decisions about whether or not you will have treatment until you know what options are available. I looked at my previous post and realized that in actuality, I CHOSE treatments based on MANY factors, but I don't think I took as much time to really consider other options (less toxic chemo, for one thing! - turns out there are SEVERAL protocols available, not just THE ONE the MO suggests). Some tumors can be treated with medications and will regress. But you need the full pathology report before you can even begin to work on a plan.
You don't need to tell your parents until you have more information, but sometimes a parent will want to know earlier so they can help you. My mother was 76 when I was diagnosed, and she has been a tremendous support for me, just because she IS my mother. (She does make me a little crazy once in a while, but she loves me and I love her, so we make it work).
Keeping you gently in my heart, loaning you a shoulder when you need to cry, and you will probably cry a lot for a while. Be kind to yourself, accept that this is a terrible thing that is happening to you, you don't deserve it, and you can cry and get angry, and then come back here for love and support.0 -
Passing through, thinking of you -all!
Cookiegal -hugs Carpe -hmm ...perhaps January or even February may be better ;-) Linda -I'll check in later with my updates =0)
Welcome Refusing -I am so glad you've found BCO. The people here are amazing -their struggles and strengths can take your breath away. They are always going to support your personal decision for what's best for you, while sharing what's worked and even didn't work for them. They are full of ideas and a multitude of ways to cope with different aspects of cancer -from personal to family to strangers, and anywhere in between. There are no judgements from anyone here. This is probably the safest safe place I've found. There are no words to avoid -Death and dying are simply words ~scary words, but not avoided here.
Hoping for Many Moments of Peacefulness for each of you,
Elaine0 -
Refusing - as you know from your research - you have been diagnosed with a rare form of cancer - in the breast. You might want to consider a consultation/second opinion at a medical center with expertise in sarcoma - if you are not already going to such a place. Perhaps you could have your tissue samples sent there for analysis and/or go there for the establishment of a treatment plan tailored to your diagnosis.
I used the BCO discussion board search function - limiting it to the discussion board specific to less common types of breast cancers and found 3 postings that mentioned sarcoma, one poster mentioned that she had her tissue/slides sent to Duke. By using "sarcoma" and looking at all discussion boards/for all time - there were many other postings.0 -
Jelson, good work! Sarcoma is not necessarily a true breast cancer, but rather a cancer that just happens to occur in the breast, but could have occurred many other places, so treatment would not necessarily be the same as for "breast cancer."0
