Horrific CLL specialist visit ! : I am trying... - CLL Support

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Horrific CLL specialist visit !

JerrysGirl3 profile image
JerrysGirl3

I am trying out a second CLL doctor right now so I guess you can say I have two doctors. After talking to the new doc I asked if he could talk to my other doc about his findings. He got furious that I had TWO docs and that he was not going to be seeing me anymore !! He then said he never heard of Dr Allen who is published and very well known, and for really obnoxious. Five minutes before he walked in I saw on this site that CLL is a part of non Hodgkin’s lymphoma!! I asked if this was true. He said yes it is CLL. I said why didn’t anyone ever tell me that. I had to find out myself on a well known group that that was so. I then complained of bone pain, some of which happened after a fall but that I’ve had before. He told me to see an Ortho doc. I then told him I had a huge node that kept swelling on my clavicle and what did he think of that. I told him I’d seen a dentist and had a cat scan. I saw an Endo and I was seeing him. And he had no answer except it was prob CLL. And I was like well what are the symptoms? I told him. Him I was told by first hematologist that even tho labs were good the cll could be racing through my bones !! He had nothing to say. It ended with him telling me he would no longer see me. And me so upset (with a two hour drive home in a snow storm) that I had to call a really old friend to talk me down I was sooooo upset. Anyone see two docs.

48 Replies

Sorry to hear of the bad experience. The silver lining is that you now know that doctor is an ass, not working towards your best interest, and possibly incompetent.

Let it go. Run away from that moron and don't look back.

Getting second opinions is standard practice in medicine. Any doctor that becomes so defensive and aggressive over it is not worth the trouble. Big red flag.

Reneelj51 profile image
Reneelj51 in reply to hawkeagle

My current oncologist knows I got a second opinion and he was completely fine with it. (It had nothing to do with my doc, just the way I handle/process). If your doc is not okay with a second opinion then yes, run! This guys sounds like a piece of work. Sorry you had to experience that...learn from it and move on. Hang in there!

JigFettler profile image
JigFettlerVolunteer

I agree with hawkeagle .

Walk away and seek another CLL expert. This link below I found when searching the posts in this forum for "specialists". It may help you locate.

expertscape.com/ex/leukemia...

Others reading your post may have first hand information. I sense you are in the US - given your snow drive.

CLL is complex, you have had a number of important medical conditions, you should expect patient and sympathetic medical advice.

I hope you find another CLL DR.

Best wishes

Jig

Oh my! All I can say is I hope you do find a specialist. My blood cancer doctor is happy to give me referrals to specialists and to find out what their opinion of my cancer is. I've seen 2 others so far and my doctor gave me a third name to see if I wish. My doctor is open to me seeing others and open to reading their reports. This should not have happened to you.

Big red flag🚩...... I would say good riddance. You don’t need to add more stress in your life. CLL is enough already!

I have a very good hematologist, but also consult with a CLL specialist anytime as needed, including second opinions. Both doctors consult as needed.

Win

Sounds like an ordeal! Honestly, if a doctor is not a good fit with you for whatever reason - and communication style can certainly be a big reason! - then you are better off without him/her.

It is perfectly legitimate and responsible for a patient to seek a second opinion from a second specialist in the field. And it sounds to me like that is all you did here in going to see this CLL specialist after having already seen a different one. There is nothing wrong with that at all. And in fact it is probably good practice for patients to do that - even if you like your first specialist. Nothing wrong with getting a different expert's take on things, especially if big decisions about treatment are coming.

I will say, no doctor ever explicitly made a point of telling me CLL is a type of Non-Hodgkins Lymphoma. I either knew that for myself or found out quickly enough when I got home from my diagnosis and started researching CLL. I can't remember now. So I personally wouldn't really fault doctors for not telling you that. The CLL still has to be monitored and eventually treated (in most cases) regardless of fact that it is a type of NHL.

What is your current treatment status JerrysGirl? Are you w&w? Or soon to start treatment? Or...?

Can you go back to your original CLL specialist? Or are you on the hunt now for a new one?

Good luck to you!

kim

81ue profile image
81ue in reply to PlanetaryKim

Re info - perhaps you need to be hospitalized to be handed info on the type of cancer.

When I was first diagnosed and hospitalized, I was given a big folder with booklets in it (from Leukemia & Lymphoma Society & from American Cancer Society) entitled Non Hodgkin Lymphoma, Understanding Side Effects of Drug Therapy, Lymphoma Guide, Blood Transfusion, Nutrition for the Person with Cancer During Treatment, how to get a ride to treatment, how to get a wig, print outs of drugs info that they wanted to give me, welcome pamphlet to the hospital oncology dept. Still have it all.

... lots of stuff I had time to read while in the hospital and still in shock at the diagnosis.

JerrysGirl3 profile image
JerrysGirl3 in reply to 81ue

I got post traumatic stress from the hospital where i was when the event that brought forth the CLL happened.

W&W. Still seeing original doc

My husband’s doctor did explain to us that CLL fallunder the non Hodgkins “umbrella “

I just found that out 4 yrs later sitting in a second doctors office five minutes before he walked in. You can understand why I was a little unnerved. My regular doc is a study doctor at NY Presbyterian in NYC. I know he’s keeping an eye on me I just wonder if everyone here has had a bone biopsy to make sure it’s not rampant in the bone. How else would you know?

Jm954 profile image
Jm954Administrator

WOOOAAAH! :( :(

A good Dr would never respond like that. He has behaved very badly and this is NOT your fault JerrysGirl, you have done nothing wrong.

Run away from this idiot Dr and find another. At least you found out now and not when you needed him to make help you make a treatment decision.

Be kind to yourself, you deserve it.

Jackie

Sushibruno profile image
Sushibruno in reply to Jm954

I went to my first cll specialist and wasn't happy with him i ran ran ran. Then found dr.lamanna.

I did the same!

ygtgo profile image
ygtgo in reply to Jm954

... just another ego who went to ' doctors school '

studebaker profile image
studebaker in reply to ygtgo

I really like this take on bad doctor👍🏻

Sounds like you found an idiot ( in time) - my Haemotologist was really happy to have a second opinion because she wasn’t a CLL specialist.

Gosh...you did nothing wrong .

My local hematologist sent me to an expert. They worked together.

Definitely give him a review. I take referrals and reviews very seriously when choosing anything from doctors to plumbers to repairs.

💕

Hi JerrysGirl

Well done you.

a) he was furious ...

b) you told him off ... on more than one occasion.

c) you turned the tables on him ...

Outcome ... he had nothing to say ...

Oh, except that he would no longer see you ...

Can you blame him ... with his self esteem bruised,he daren't risk going another couple of rounds .

I've been lucky with my Haemotologists and they are ok with me wanting to get a second opinion from a CLL specialist if/when it might be needed, but I have had to 'manage' a few self important GP's.

P.S.

The way you handled things strikes a chord ... there's not a wee bit of redhead gene in the mix somewhere is there ?

ygtgo

(Scotlands answer to Yosamite Sam ! )

PlanetaryKim profile image
PlanetaryKim in reply to ygtgo

what does "ygtgo" stand for or mean?

ygtgo profile image
ygtgo in reply to PlanetaryKim

You Got To Go ... Oww!

I live with chronic pain ... ( and a sense of humour! )

PlanetaryKim profile image
PlanetaryKim in reply to ygtgo

haha! Now I get it! Thanks :)

JerrysGirl3 profile image
JerrysGirl3 in reply to ygtgo

Hahaha. Only red in my hair is a russet area that turned that way when I had to use peroxide on y brown hair after a minor surgery lol. Tho I kind of like the beautiful shade lol!

Dont be upset. I had a specialist see me for 8 years, I spending thiousands of dollars on consultations and when I asked him several times to do the genes test instead of blindly prescribing a chemo on and off many times he fobbed me off so I sought a second opinion. The new doctor sent me for a genes test immediately and it turned out I have the TP53 deletion and chemo does not work for TP53 - resistance. I fired my old doctor and have not looked back now on Veneteclax and having my last of 6 rituximab infusions tomorrow. Never be afraid of a second opinion. Some doctors just should not be practising.!!!

What a shocking experience!

I had a second opinion tell me CLL is nothing. The enlarged lymph nodes are just fatty tissues that have accumulated. My blood count which over the years has crept up is stable and if I were 20 years older they wouldn’t have seen me at all. Obviously I won’t be seeing that one again. Just move on.

Having to cope with the anxieties of this condition is bad enough, but to be confronted with an idiot doctor like this is dreadful. He may not want to see you again, but you definitely don’t want to see him!!!

We tend to think that all doctors are supermen but you know they are human beings and suffer from the same physical and yes ,emotional problems as do all people ... Sorry you had to deal with a person who has his own issues...

You are not going to change him/her... Good, that he showed his stripes early on and you can move on.... Getting another opinion is always a proper approach and if one’s regular doctor can’t deal with it , then it’s time to find a new regular doctor ....

Be Well!!

I am an advocate of getting 2nd and 3rd opinions, and agree that the 2nd doc sounded like a bad apple. I missed what you didn't like about the 1st doctor, are there obstacles that can be overcome? Finding the right team is imperitive to receiving the best care. We need to believe that our docs have our best interests at heart and feel comfortable enough to share our concerns, symptoms, and questions without being condescended or dismissed.

It’s not what I didn’t like about him. He’s tops in his field. Does tests. I was in a study he had going on for awhile. He’s nice and well known in the field of cll research. He’s just over 100 miles away but I’ll take that anytime now that I’ve seen the assholes out there.

Hi JerrysGirl3,

I see my CLL Specialist as a partner on my journey. My specialist told me that she was very conservative and data driven. She also told me that even CLL Specialists do not always agree. She also said that if I choose to seek an alternative opinion and if it differed from hers, she would be happy to defend her position. In the end, I am steering the vehicle. I knew then that I had the right Doctor for me.

Best,

Sandy

The older I get the more I prefer female doctors. I think a lot of male doctors talk differently to male patients began female

What insecure and incompetent idiot that doctor is. You should report him, that is not a way to treat anybody.

I also had very upsetting situation with my previous doctor and his special nurse, which left me upset for three weeks. We are in vulnerable state of mind and it hurts deeply.

It is good to have these wonderful administrators and volunteers for seeking advise and understanding. You did nothing wrong with seeking second opinion.

After dusting my hurt feelings, I picked my self up, with help of my family and friends and especially support from Jackie, Neil, Newdawn, Paula and others from our group

I did find a new doctor, who I can talk to and ask question. She is willing to answer my questions and not make me feel like I should just do what she tells me.

Go for it and find yourself a new doctor who you can trust and feel comfortable with.

Good luck🤗

Dana

I’m waiting to get all my test results sent to me (I looked some of them over and to me, they don’t look so hot. However once I get them then I will have my say in reviewing him. My husband says I’ll get a bad reputation by reporting him but I believe I’m saving another patient from going thru what I did.

JerrysGirl3,

I had a similar experience. Don't waste any time or energy on this one.

The doctor is only human, forgive their shortcomings and move ahead. At some point in their career they will probably look back with shameful regret, and hopefully grow to become a better provider.

Find a doctor that is willing to listen to you and provide the balance of knowledge and compassion that you need.

Check this out: cllsociety.org/toolbox/cll-...

Hope today is better for you,

JM

Other doctors I’ve moved on with. This doctor I will review on websites. I don’t think he likes women : O

He must have forgotten who brought him into this world.

I hope things get better for you soon.

I am so very sorry for you. You do not deserve that. He should not be a doctor; he needs to work on being a human being. Shake him off and move on; do not let him adversely impact your physical and mental well-being. I will say a prayer for you!

The guy is an ass and be glad to be rid of him. No medical professional should ever communicate like that. He’s disgraceful and a black eye on his profession.

Don't worry you are not alone. You are doing the right thing.

I am very happy with my situation now. However, this is Doctor number 4 in Clinic number 3!

JerrysGirl3 profile image
JerrysGirl3 in reply to jbctx

Right?

jbctx profile image
jbctx in reply to JerrysGirl3

Right?... Perhaps it should be Correct. There should never be a problem in seeking a second opinion for individuals in our situation.

I had to fire my oncologist in 2015. He diagnosed me in 2009. I was having my first crisis with CLL. He told me he would never treat me because of my poor health I would never survive the chemo. I found an oncologist who would treat me. If I was going to die, we'll give you a fighting chance. I survived. Went 39 months in complete remission. I now am in CLL relaspse. I changed oncologist again. I am on Imbruvica. I started at 420 mg, and dose was lower to 280 mg due to side effects causing hospitalization.

Hidden profile image
Hidden in reply to Drewpic

I am curious which side effects from Imbruvica caused hospitalization? I am also on Imbruvica and are experiencing side effects. Back and leg pain. My side effects didn't start until I was on it for a month. I go for my check up next week and will see if there is anything they can do to ease some of the side effects.

JerrysGirl3 profile image
JerrysGirl3 in reply to Drewpic

What was happening to you that they started treatment? That’s what scares me is that I’ve been on w&W for four years and am still clueless as to what they or me should look out for. Between my stroke four years ago and my inability to concentrate and “take in information “ I feel really lost. I myself caught my breast cancer and thyroid cancer myself, in very early stages. The thyroid cancer was metatastic and both were aggressive variants.i believe in early detection. I feel unable to educate myself. I have to find an oncologist out here where we have awful doctors, and have them try to handle things for me.

treatment may start when a combination of physical symptoms and blood work numbers indicate that the benefits of treatment outweigh the risks. here is a partial list from the cll society's web site:

* Weight loss >10% of body weight in previous 6 months

* Severe fatigue (ambulatory and capable of all self-care but unable to carry out any work activities

* Fevers of more than 38°C for at least 2 weeks without evidence of infection

* Drenching night sweats for more than a month without evidence of infection

* Evidence of progressive bone marrow failure manifest by low blood counts (cytopenias) including anemia (low red blood cells) or thrombocytopenia (low platelets)

* Massive or symptomatic splenomegaly (enlarged spleen)

* Massive lymph nodes or clusters of nodes (>10 cm) or progressive or symptomatic lymphadenopathy (enlarged lymph nodes)

* Rapidly rising absolute lymphocite counts with an increase of more than 50% over a 2-month period or a lymphocyte doubling time (LDT) of less than 6 months

here's a link to the article about this topic:

cllsociety.org/2016/03/cll-...

During my 15 year CLL journey I have had 4 doctors, with my local hemoc as the manager supported by several specialists around the country. In my opinion it is best practice for a patient is to get a second opinion from a CLL expert when it's time for treatment, as others have noted.

As you recruit docs make sure you're getting hard copies, and digital files, of all blood work. Despite the digital age most medical institutions still rely on fax machines, which can be maddening. You'll need to keep your medical records handy so you can share them with your docs, no matter how many forms you fill out to have the organizations share data--i've found that fail to deliver in a timely way.

Thank you so much for the information !

JerrysGirl3 profile image
JerrysGirl3 in reply to Drewpic

You see that’s my problem. I’m reaching the stage of relapse in all my cancers and I have to ask for tests! I made an appt with a new hematologist oncologist locally. He got good reviews. New clinic he’d just went out on maternity leave. I was hoping for female but oh well. His reviews were all positive and spoke of a good man so we will see. I see him in two weeks. I’ve said before I don’t think docs really understand CLL and it’s entirely different in each person.

Hoping this new doc is the bright light you need and you get it all sorted!

I saw 5 hematologist my first year.

CLLSociety has a list of specialists on there web site. CLLSociety.org

See a CLL specialist before treatment.

There are many great new treatments.

Be well,

Hoffy

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