I got to the point that I can’t stay with my oncologist any more for many reasons. One of them is that she doesn’t see me as a patient, but just as cancer. No symptoms that could be seen as a sign of cancer or side effect of the therapy are of interest.
After I was hospitalized for urosepsis and anemia, no follow-up labs or consults with the specialists were ordered and I was left to fetch for myself.
The questions from my dentist was addressed with boiler plate language not helpful in any way.
The last drop? Not recommending getting my teeth cleaned since it’s an elective procedure. Really? The list goes on and on.
In her book, everything is dangerous for me and I should just stay still and wait until death.
I already spoke to the social worker and will talk to the patient representative next week.
I’d really appreciate if you can share the names of your oncologist and palliative care physician.
Feel free to pm me if you’re more comfortable to do it.
Thank you!
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Tolife_18
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LONG AND I APOLOGIZE. (As I often state on this board), I write these lengthy long emails, just like I talk forever but I live alone, have no family so I am alone alot so i think that is why i write so long.)
I have seen others post for the past two years when they feel like their own onco was not doing the job properly
I apology to you bc i failed to comprehend that (1) that question was not directed for me and (2) that you felt they just were taking the easy route or making you feel that death was not too far away.
You will read from others (probably) that they felt the same or felt they were not proceeding what they read. I felt a big instinct that I was losing faith in my onco and my instinct was strong, but then when finally sent to the palliative care doctor at the center and once she gave me some pain meds, I was not experienced with the severe back pain (it was in my lungs first). My onco said to me, it is probably just arthritis, not everything is cancer related.
I could not even walk out of my apt. building to go to a store, because every 1/2 block, my back was burning and I would have to look for a light post or a wall or mail that I could lean on for a few minutes and continue my walk. It was getting crazy.
At that time, I just believed what doctors told me. From this board, I learned I could as for a reduction in the amount. I did not even know that was an option and that was a big step for me to learning to fight for myself.
Lo and behold the next ct scan show cancer in my spines that made holes. I wanted to say to her Look, I was right but I held my tongue. Maybe the next time I, or another patient, report sudden inexplicable pain , she should pay more attention bc obviously my onco was wrong. I wish I had but I didn't
My onco at a well-known cancer center has social workers which are a blessing and the palliative doctor was someone who was honest with me and forthright and I respected that.
But my onco had told me about a year or so ago, that they (oncos) were expected to do 12 patients every 45 minutes so they have alot of pressure on them.
But as the other commenter posted "You are the best advocate for yourself." I have now changed the way I was bc this forum board gave me the best advice and after that, I was a bit more demanding, but polite, but wanted answers.
They recently (two years ago) now added to my patient portal when I get home, any ct scan I have done it is uploaded onto my patient portal so I can read it first (I read the laymen's language which even the onco goes by that) bc their radiologist writing mean nothing So at least I knew then Okay, it has spared or Okay that hasn't.
I learned so much from this board. I never ask if they think a certain med would work better on me and if anybody could let me know what their side effects were and how bad. There are way too many variables, overhealth to begin with, I never had an issue with the falsodex injections *to me they were were the easiest part for three and a half years until it stopped working. I do have big cushy butts so that may be why I felt no pain and could sit down immediately.
I never took a vitamin in my life nor any of those supplements that are not even FDA approved for the most part. In US or NY where I live, they do not use tumor markers bc they said they can go up and down for various reasons.
I never read any books or articles about cancer. I figure the 1-2 days a month I had to go to the cancer center (Usually, here they call it a chronic issues, not a terminal issue, but I guess it sounds better and terminal may freak some people out.
But you are going on your instincts and chose to go to another oncologist. I never did, even into my third year, where I had completely no had trust in her.
BUT YOU ARE GOING BY YOUR INSTINCT which is something I wish I had done earlier. Nobody but God knows when you pass. I had three friends, about my age, 63 (lol yeah I know) and he died from an unexpected death attack. They were all super healthy and yet one passed suddenly from a heart attack, one had a brain aneurysm that burst, and the other friend died from a severe asthma attack. She was being driven to the hospital and with one of her sisters in the car and as they were driving there, she died in the car.
So stay with that instinct and I think you may very well find death is not that close.
There are MSK offices in Holmdel and Baskingridge. I got a 2nd opinion from Sue Park in Holmdel, but ended up moving to NY. Went to MSK there in Nassau County.
MSK is excellent. They have tumor boards, who discuss your case so it's not just your onc who is thinking about you. Also the billing procedures are not a big hassle, unlike my other experiences in NJ and CA.
I would second the recommendation of MSK - they are the absolute best, have the best expertise, access to trials, and compassionate, serious attention to the patient. Worth it even if you have to travel a bit farther!!
in my frustration I forgot to mention that I’m being treated at MSK, mostly Basking Ridge. But not all doctors are creative equal, particularly when it comes to compassion.
I’m planning to stay with MSK, but strongly considering changing the oncologist.
Certainly not all docs are equal. I hated watching what a friend of mine went thru at MSK in NYC a number of years ago. In my eyes it was negligence bordering on abuse , and there was nothing I could do about it
Odd. I had wanted to do that but the oncologists are all are one floor and I felt that if I wanted to change oncos at the same cancer center, it would label her among her co-worker oncologists and, the most obvious, is that my first onco would probably state to her fellow workers (oncologists) and she would give excuses as to why I wanted to leave her so I felt that was going to be bad for in the end.
I do not know if your cancer center has a larger group of oncologists that may be specialized in specific kinds of cancer but on different floors, but doctors, like any group gossip. I am sure the chief of staff would want to know why I want to leave Dr. B. I knew that I did not want to do something to align her career (and I doubt I have that kind of power. Curious though did you have to explain why you asked for a change from your onco and then the second time. Did they ask you why or you just told them you wanted another doctor. Sometimes I worry about the stupidest minimal things. I wish I had the knowledge I have now than I did when being diagnosed. Prayers to you and the best going forward, and let us know if you prefer the new one.
I just wanted to say that I switched oncologists within the same system and I told them that we simply weren’t a good fit personality wise. It wasn’t a big deal and I selected another oncologist there and moved on. No problem from either Dr. I told the new oncologist that I thought the other one was a good Dr but we had a bit of personality conflict. I told him that with something like cancer I felt that me and my Dr need to work smoothly together. He said he agreed.
I am also treated at MSK and have been very happy with them. I used to go to NYC for both my oncologist and for infusions, but since covid I get infusions in Basking Ridge but still see my oncologist in NYC at the Breast Center. It works well for me.
My oncologist at the Breast Center in NYC is Dr. Nancy Sklarin. She has been my oncologist for over 12 years, since I started this journey. Fortunately, my HER2+ cancer has been relatively stable, except for one relapse. At that time, we had several treatment alternatives and were able to discuss them and decide on a course of treatment going forward. She has a lot of experience, and I trust her judgement. The downside is that she does not have a new regular nurse since her previous one retired and moved.
12 years!!! That is fantastic. I was told in November 2022 that I had about 3 or 4 months left. So far I am still here, taking NYA MTA buses and trains and do my own shopping. I no longer feel pain bc I get adequate medication for that. This is now going into my 6th year of MBC. May I ask (if you prefer not to mention, that is fine.) Did it ever spread to your liver? The liver was the last distant organ it went to and the next CT scan (they moved up it for me since I demanded it bc I was taking meds that made me feel so sick and no quality of life.) I said I do not want to wait another two months getting this sick only to be told it is not working.
Next scan showed that all the tumors had grown aggressively. Did you ever have it go to your liver and if so, what did they do for that. I do not know even if searching for an oncologists who specialize in mbc in the liver. Because that was what my onco said (by that time, our relationship was deteriorating.) I just want to know if it spreads in one liver, is that really the end.
not to hijack this thread. But I have been living a very active life w liver Mets for over a year—and not slowing down. I am on xeloda , which I know was rough for you.
Bottom line is there are many other treatments, including the new hormone blocker for women with the ESR1 mutation. It’s worth doing a biopsy—which can be a blood biopsy not requiring surgery, to see if you qualify.
I really wish you would go to MSK or NYU, get fresh opinions and seek out new treatment options. It sounds like you’re pretty robust still, so it seems a shame to stop treatment. You are lucky to live in a city with an array of good doctors.
There are also local treatments for liver Mets—ablation, Y-90 and more Perhaps these are an option. They seem to buy time for many women
It may be that with the right treatment you have many more years. I know you’ve had a rough patch, but I worry it has scares you off any treatment which is so risky.
Sorry to be blunt. I figure that as a NY-er you can handle it.
I have a friend who was treated well at MSK . He was there for a little over a month. He is now home, and looking very healthy. He got home this past Wednesday, I came by with a friend this pas Sunday to drop off food, and to pray with him. When he hugged me he didn't want to let go, and neither did I. He later texted me how much he enjoyed 1 of the the 2 home cooked healthy meals I brought to his home. GOD is good, great.AWE-MAZING. GOD willing I will go to check up on him again this Thursday. XoXo Thrivers/Warriors keep the faith.🙏😇🙏😇🙏😇
She seemed very knowledgeable, but I think because of the MSK tumor boards you have to be. In terms of personality, she was very cheerful and peppy. Not sure if that's your thing or not. I can only speak to a single video chat, so I really don't know how she treats her patients. But if Holmdel is convenient, maybe worth a shot?
Dear Tolife---I am so sorry to read of your aggravation at a time when you absolutely need full support from all avenues. The MSK facility that I go to is too far from you. What about the cancer unit connected with Rutgers. I have developed internal trembling, probably from the Letrozol, After seeing two useless neurologists up rear me, I went to the Rutgers unit. The doctor took the matter seriously and had tests performed to diagnose instead of tapping below my knee, telling me I am suffering from anxiety and prescribing me drugs. I am impressed with their professionalism. However, knowing you the little I do, I would hazard a guess that you have scouted Rutgers out well before my recommendation. I so hope that you have a soft landing in some doctor's care where you are listened to and well taken care of. XXXXOOO
Rutgers is now affiliated with St. Barnabas. St. B is building a brand new, state of the art cancer building next to the existing hospital in Livingston. I’m not sure of Rutgers wil be part of that. Whereabouts is the Rutgers cancer center located at present?
Dear 13plus I am blaming most of my brain fog on the cancer and prescribed drugs. There was no way that I was going to remember the name the hospital affiliated with Rutgers. Actually, I thought that it was affiliated with a different hospital. Thank you for the information. It might be just the right information to help Tolife. I went to Rutgers for a neurologist. So, I am ignorant about the oncologists at Rutgers.
Oh I get it! Even without chemo fog it gets too much to keep up with and remember! And I can’t guarantee I’m correct about how they are united but that was my impression anyway
Actually I’d be very interested to know the name of your neurologist (if you can recall that 😊) in case I need one down the road! It is so hard to find good ones, and who listen well!
Actually I have a client who mentioned some foot neuropathy, (she was treated for esophageal cancer a few years ago. ) When I said you really need to get that seen to it turned out she had been to a “top” neurologist last year. He ran his needle tests, couldn’t find anything wrong so then claimed it was just “age”. 🤯 I’m still incredulous! Unfortunately she trusts him.
It makes such a difference and is so important for us to have a doctor who “hears” you. Ugh, I am sorry you’re having this experience with your current doc.
I love my doc at St Barnabas . Dr. Litvak, yet I must admit the running of the actual office (and therefore communications!) seems to be going downhill over the past couple of years. I even complained about it to the social worker the last time I was there. So it has got to the point where I hesitate to refer, due to my own frustrations when I need to pass a message to her.
My NJ marketplace insurance plan allows me to see oncology at Upenn in Philly. I’m in a trial there at the moment. They’re fabulously organized and the whole team I’ve met are lovely people. Probably too far for you to travel but worth knowing as a back up.
I did what you asked and sent a pm to you. Isn't there a good male oncologist at the hospital where you go? I have heard of such a person but maybe he is not there, now. I suggest you check it out if you haven't yet.
I am so sorry you are having to deal with this on top of all the other day-to-day struggles. I too had issues with my oncologist from my initial diagnosis to the point I told my family doctor, if my cancer returned, I would not go back to him. Well, the cancer came back and I found a new oncologist. Best decision I ever made. I thought the stress I was feeling was due to my diagnosis. I realize now, a lot had to do with my utter lack of faith in my oncologist. I felt at his mercy because I was so ill. My son bought me a book called Radical Remission: Surviving Cancer against all odds by Kelly A. Turner, Ph.D. This book was a true eye opener for me. She interviewed over 1500 people: patients, medical professionals and alternative healers and came up with 9 key factors that all survivors relied on. Factor 2 is "Taking control of your health". In that chapter, she outlines how having a medical team you can partner with to ensure you remain has healthy as possible is invaluable. I am currently making changes in keeping with all 9 factors and can honestly say, I feel much more in control of each day I am given. I wish you all the best in your journey and hope the change in oncologist gives you the courage to continue to be your own best advocate.
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Update on failing Ibrance!
