Hello, so this is my first time posting. I was diagnosed with MBC in December. I am on Ibrance and Fulvestrant. Mets in my liver, stomach lining, and a few spots on bones. I am seen at Dana Farber. Things seem to be going well in general. This weekend I went to another hospital closer to home to have a Parcintesis done. ( totally botched that spelling). . They messed it up and I am now having to deal with the repercussions of that. It’s not life threatening just uncomfortable. Worse was everyone’s attitude towards me. It was like I was a dead man walking. My Doctor says I have a good chance of enjoying years. ( I know no one can really know). It just made me sad to be in this other medical community and not to be treated with the same hopefulness and positivity as I have experienced at DF. It was a rough weekend. Thanks for listening. Tomorrow will be better. 😌
Frustrated : Hello, so this is my first... - SHARE Metastatic ...
Frustrated
I am so sorry to hear that you had to go through this! Not all doctors and hospitals are equal when it comes to cancer. Sounds like they added insult to injury with their attitudes. At the very least, now you know which hospital to not go to, for anything! I understand how you feel, as I had to change oncologists when my MBC was first diagnosed because the oncologist who had taken care of me for almost 7 years from my stage 1 diagnosis, seemed to have that same attitude of all is now lost. The oncologist who has taken care of me subsequently is super upbeat and is such an amazing listener and always seems to have resources and help available. There is a really wonderful sense of security and safety from doctors who care, listen and are willing to say, "go live, we got this!" I hope you heal quickly from your procedure, and that you don't have any lasting repercussions from it. Take good care, Godspeed to your healing!
Thank you for replying! I’m sorry you had to switch oncologist s but happy you found one that you vibe with. I wonder why they aren’t all on the same page? Oh well. I’m going to stick with the positive people. Much more helpful!!!!
I am sorry you had to deal with that and will just agree that surrounding ourselves with only positive “let’s do this “medical teams is everything. I went through 3 oncologists in one year after finding mine . She’s wonderful . Diagnosed May 2020. Ibrance / Letrazole - MBC and everything stable so far so good. But my outlook and attitude completely changed when I had the right support. What an awful feeling to be treated like that. We are warriors and moving forward all the time. Take care and stay strong ! Elizabeth
Thanks for the response Elizabeth. I guess I thought the docs would all be on the same page. It threw me for a loop. Anyway I won’t be going back there again!! Thanks for the support! Carla
Hi Carla,I'm glad that you experienced Dana Farber before experiencing the hospital nearer you! Clearly, not all medical personnel keep themselves up-to-date in terms of a basic understanding of the major illnesses patients may have.
You would think those with a limited understanding would choose to take an optimistic view when dealing with new patients under treatment elsewhere but it appears that is not always the case. Even if, out of their own ignorance, they did see you as "a dead man walking", it behooved them to conceal their reactions.
It is good that we have this forum to discuss our negative happenings. I'm sure you won't let this experience shape your perspective.
Hugs,
Cindy
Hi Carla; Sorry you have to join us but there is a strong supportive group here. Doctors and nurses are no different then anyone else. There are good, bad and the mediocre. I have had them all. Don't despair! You are on a good medicine and when that fails there are plenty more.Hope you are recovering well and by now are on your way to recovery.
Cheers, June S.
So sorry to hear about what you have to go through. It is so disgusting that some doctors and hospitals treat patients so badly insulting them and causing mental injury deeper than their physical injury. Remember, you are not alone here. You shall recover soon, Take care.
I really hate this when it goes into the vitals. Right now they have me on enough xeloda to drop an elephant. First time on this journey the side effects can be a bit much. However 9 cm liver leisions, it has to be done. Living in Canada, we don't have as many options for liver. They don't like to radiate or oblations (sp). Dr like to just get ride of the leisions. However, I have read a recent article for a liver operation in my Province. It's all a ' let's see how treatment, xeloda works first.
It is very important to have a good onocologyst and team. It means so much in your healing ❤
Deb
So sorry about what you went through. I have found that when I see doctors outside of Sloan I am treated by them as some kind of lab rat. It is very upsetting. And makes me sad. So I have decided to look at them as uneducated on MBC and roll on. Seriously! Stick with the positive folks and be sorry that the negative ones are nkt as educated as you and your team.
I am very sorry that you were treated this way and that they messed up your procedure. I hope you will heal from their error and that your other doctor at Dana Farber will help you to stay positive in your journey. Sending hugs.
So sorry you had to be in this situation. But you are already on the hopeful track. Thanks for sharing your pain to heal others
I'm so glad you reached out for encouragement. I hope that you hang on to the positivity of Dana Farber - I've seen a doc at DF as a second opininon and he was so very helpful and encouraging. BTW I am also dealing with paracentesis and cancer in my stomach lining. So please stay hopeful! Take Care.
Tomorrow will be better. I would stick with Dana Farber! If I were closer I would go there!
It is simply amazing that in this day and age there are so many misinformed/apathetic medical personnel. I’m sorry you had this experience and are dealing with repercussions of a mishandled procedure. You are right- today will be better, and tomorrow better still. We are all buying time and trying to live our best lives. So treat yourself kindly and keep your fight.
So sorry to hear you had this experience. Many of us have had a negative experience with our teams, etc. that have warranted making a change. Glad you are with DF for your care. Top notch facility for a reason. Same for me at Duke. I can’t imagine going anywhere else now. We need encouragement and compassion dealing with this diagnosis. This is a long term ongoing relationship for the rest of our lives. We have to feel assured we have the support and expertise that will keep us moving forward. Hope this was an outlier and you have positive experiences going forward. Big warm virtual hug 🤗. Lin
Hi. Yes I have been a patient at Dana Farber for 10 years. Love my doctor and her team.
Hi Marianne- I am next door at BIDMC… I had my survivor clinic at DFCI and even worked there way back. Super place to get treated. Which local hospital made you feel bad. I will avoid it.
I was a nurse and nurse practitioner for years you got that treatment because often people even the most educated who work in hospital settings are usually taking care of the sickest people with the worse prognosis, they often don't know about the latest advances, they don't see the good stories in the outpatient setting.That is not to excuse them that's just hopefully to help you understand.
Ibrance worked wonders on my lungs and lining of my heart and lung s and lymph nodes. I have much hope for you.
I will soon be 5 years since MBC diagnosis. ❤🌺❤
I am sad that you are starting out with doctors that don't have a true understanding of how devastated the newly diagnosed cancer patient really is. I also had a doctor for over a year that was such a bully and so negative that i phoned the Cancer Agency and talked to a nurse and told her how sad and stressed I was every time I had to deal with this negative doctor. She changed my doctor immediately. Within two weeks I had a new Oncologist who is absolutely lovely and warm and helpful. I have been doing so well since I am her patient. So do not be afraid to let the health professionals know that you want to be treated with compassion and understanding. And please remember that metastatic breast cancer - even at stage four - is not a death sentence. Of course we will all die sometime but for now you have a chance to live and be happy even if you have this illness.
If you stay on this site you will see that many women diagnosed with mbc live long lives. Yes, it is hard to be a patient and you will feel hooked up to the medical system and that is not fun but you do have a chance now to heal. I truly believe we play a big role in our own healing. We can begin to understand how we got ill and the things we can do to change our lives to encourage healing. I watch a lot of YouTube videos on health and healing and I take what I feel is good out of each of these stories. I am slowly learning to curb my weaknesses and incorporate healthy practices into my life style. I have not reached total exuberant health but I am now showing no evidence of disease. I pray that the things I am doing and the way I am thinking is helping me do well. Of course, I fall off the hope wagon from time to time but most of the time I picture myself getting well again and I picture the medical system helping me along the way.
Best wishes for your future journey into surviving this scary diagnosis. Like I said earlier, do not hesitate to let health staff know that you expect to be treated with encouragement and respect.
Hugs Marlene
Very sorry for your experience, but at least you now know how great the staff at DF is. Do you have ductal or lobular? I have both and it’s the lobular in my stomach lining.
Hi there. I had lobular 5 years ago and it came back. 🤷♀️
They are worrie that my lobular has gone there. I am bracing myself for that.
If you get the proper medicine you should be fine. I eat what I want and feel well enough except for the fatigue. Good luck!
Do you take anything in addition to the Ibrance etc? When they discovered it I imagine they changed you to try to control it… but I am already on Ibrance and if they find it then they will need to change my meds. Or so they give you something in addition just to hit the stomach lining
Is stomach living cancer something slow growing? Does it mean you can’t eat?
I was on arimidex and fulvestrant and Zometa for 5 1/2 years and so when it came to my stomach lining they did switch me to Ibrance and Tamoxifen and Zometa. I’m sorry I do not know if it’s slow growing or not. My first endoscopy, before I started Ibrance, my stomach lining was covered in red bumps which the doctor said were tumors. After just a few months on the Ibrance my stomach had almost cleared to normal. I eat anything I like, as I decided I was going to live the way I always did as much as possible. Have you been having stomach upset or vomiting? I hope they find you a good treatment if yours is in your stomach. I was vomiting profusely before I got the Ibrance and there are also other pills that help calm your stomach until the cancer drugs kick in. Please keep me posted on your diagnosis.
Well I had an endoscopy pretty early on but they thought it was ulcers from the NSAIDs now better. But they seem to always worry about the stomach lining. But I blew past Ibrance now on Verzenio for not yet 2 cycles and will try chemo if this doesn’t work. The stomach feels a bit sore like pinching at times not bad but makes me feel it is brewing. Scan in a few weeks in fact this reminded me to call and set up.
Hope it is not that! How long were you on Ibrance?
I was on Ibrance for nearly 18months… then switched to Verzenio a month and a bit and ago.
Thank you for the info.
Hi can you tell I’m if Dana farber helped have anything different?
Hello. So I get my treatment at DF and people have been wonderful, very upbeat and positive. I get my stomach drained around once a month and decided to try a hospital closer to home. The people at this hospital were a bit less positive and I guess it scared me. I’m going to stick with the positive crew at DF!!
So sorry...I too go to Dana-Farber and usually get my scans closer to home. My husband was also a patient at Dana-Farber and had his treatments closer to home until we experienced the same as you. We found thst the extra effort was worth the drive if there was anything important going on. At this stage of the game you probably know more about your disease than some of the people treating you in the smaller hospitals. Try not to have too much conversation other than niceties unless you're with your oncologist and team. It can be crazy making. Hang in there and enjoy your life.Michele
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