CSN Login
Members Online: 19

completely lost in a medical circus

brunilda51
Posts: 6
Joined: Jan 2013

My baby sis (57) was diagnosed with stage 3 b or c Dec 2012 and in her rush for treatment, she hastily chose mastectomy without chemo prior to surgery.

She was concerned about the cancer but also about the insurance deductibles going up in January 2013.  After mastectomy she had complications whereas she woke up with an eye that was droopy. After a mastectomy, why on earth? We insisted on Scans and a pituitary mass was discovered and eventually removed via craniotomy (this medical care is what you have to accept when residing in Las Cruces). Mass was benign.

 After d/c Jan 11, it has been delay after delay waiting for PET, echo and other tests approval by insurance, waiting for results, consult with surgeon for port implant, and waiting for appointments with oncologist. It is now 2 1/2 months since mastectomy and no chemo or any adjuvant therapy! We are so frustrated and feel helpless. She was supposed to  start chemo last week, was actually at the oncologist's office and poked by the nurse 6 times until finally they decided something was wrong with the port. The same surgeon that did the mastectomy did the port, does not seem to be many surgeons to choose from in Las Cruces, so you are limited in your treatment choices.  She was sent to the hospital where an xray was done and the MD told my sis that the port was implanted too deep and the line faced away from the heart (whatever that means). He told her that he will replace it next week, without any consultation with the original surgeon!  The latter apparently is out of town until Thursday.

This is a circus with clowns dressed like MDs! Starting in 2007 when she was admitted under a mental health diagnosis to the hospital where she complained of a mass in the breast. They only did an ultrasound and found nothing, telling her that she was a chronic worrier. 5yrs later she is stage 3! Her fragile mental condition has kept her isolated and pretty much homebound. Seen her breast change might have just brought memories of her hospitalization where she was labeled a worrier, she might have feared that complaining will lead her to another commitment. She is now so depressed, despaired and scared and all these errors and delays are stretching her hold on reality. The oncologist wanted to start her on low dose chemo every wk. I feel that given the chemo delay and with the advanced  cancer stage that this approach is too conservative.  We feel that we are at the mercy of the oncologist because there are only two to choose from and women are forced to agreed with whatever approach is offered. I feel that a more aggressive treatment should be done.  Is the oncologist worried about how chemo will affect her mentally? She is also diabetic and hypertensive but PET was clean and no heart problems seen.

We feel that all these tests and the port implant should have been done before her d/c from the hospital, coordination of care is deplorable. Her PCP was useless. There should have been an oncology navigator to help her out. She, in her fragile mental status, has had to deal with all these delays, phone calls, appts, etc. It is too much for her! This latest blow with the port can send her over the edge. Why can't oncologists just start the chemo by other infusion means instead of insisting in the port? Is like all the demands are for the doctor's convenience!

I am petrified that my sister's chances of survival have been further  compromised by the chemo delay and the low dose approach! It is bad enough that she is stage 3, does it need to be compounded this badly? My God! Maybe we should consult a lawyer? Is there some medical board where someone can complain about the medical care received as a whole, not just a specific MD? There are not many stats out there about the impact of delayed chemo but we don't have to be experts to know that it can't be good and the chances are bad. I keep tellling her to forget about the copays and deductibles and her husband's need for sleep and to come to NY to Sloan Kettering, I need to convince her.

With all these crappy doctors in her hometown, her chances are with a miracle!  I wish there was a center like those for substance abuse rehab; beautiful surroundings, and whole body treatment approach from nutrition to fitness.  Has anyone created such residential facility? Thank you in advance to any who contributes and listens to my vent.

disneyfan2008
Posts: 5339
Joined: Oct 2010

I hope things turn around with insurance and calm down soon..

 

thinking fo you and your family.

 

Denise

Double Whammy's picture
Double Whammy
Posts: 2276
Joined: Jun 2010

The University of New Mexico cancer center in Alburquerque is an NCI designated cancer center and might be a closer option than New York for a second opinion if that's what she wants.  All cancer centers with NCI designation have access to the same resources, and think tank approach.  Or at least they're supposed to.  It should be seamless, for example, for someone in Alurquerque to consult with someone at Sloan if he/she felt it was necessary.  They would have access to the same clinical trials.  Or something like that. 

About it being 2 1/2 months since her surgery, I was told that optimally chemo should start within 12 weeks after surgery.  I asked because I also had to have a hysterectomy after my breast surgery and needed the ok from the gyn oncologist before I could start chemo for breast cancer.  Like you, I was really worried that it would be too long.  No one else seemed worried, tho!  My breast surgery was May 11 and I did not start chemo until July 23 (about 2 1/2 months later).  I was Stage 1 so this may have been why no one (other than me) was in a panic about starting chemo.

I hope your sister is able to be comfortable with the medical care she is receiving.  That's one of the most important aspects in our healing.   Mental health issues should not effect how she is treated but she may need some help in communicating and understanding.   

Suzanne

brunilda51
Posts: 6
Joined: Jan 2013

Thanks so much for that information, really helps to know that. SHe is actually closer to El Paso, and I believe there are centers there also. Transportation is a big problem for her, and that is why I visited her for two weeks, to take her to the places her husband has failed to take her. I really think a Cancer center would be best.

jamiegww's picture
jamiegww
Posts: 384
Joined: Dec 2009

I wonder if you are more upset because your sister is so far away and you feel helpless to do anything for her?  My sister, who is a nurse, lives a couple thousand miles from me and I think it is driving her crazy that she is not able to help me with my cancer battle.  If I don't reply to her emails immediately or return her calls right away she starts contacting other family members to see if I'm in the hospital.  When she found out my cancer had spread to my lung, she asked why they weren't removing the lung.  She insisted I could live with just one lung.  She has offered to jump on a plane and come out here.  The point I am trying to make is that maybe you are more concerned than your sister is.  Have you asked her how she feels about all of this?  Don't get me wrong, I think it's wonderful that you apparently love your sister that much, but don't go overboard.  She really needs to do whatever is best for her and only she can know what that is.  You sound like a wonderful advocate but you just have to calm down a little and ask her what she wants to do.  I have stopped telling my sister most of what is going on with me now because I just can't handle her reactions anymore.  I am sorry if I am way off-base or I hurt your feelings in any way because that wasn't my intention.  I'm just trying to help.  You can always come to this discussion board for advice.  We are here to help each other and we don't necessarily share the same opinions so maybe someone else will be able to help you.  I wish the best for you and your sister.

HUGS!!!

Jamie 

brunilda51
Posts: 6
Joined: Jan 2013

Jamie: Thank you for sharing your impression of my post.  Sadly, some of the things I worry about is what she has mentioned to me over the phone and when I visited her for two weeks back in February. Is just that her story is so long already, I had to edit a bit. Smile  I actually was present during her appointment with the oncologist, which I liked as a person and as a doctor because of the time she dedicated to the appointment without rushing. But, the lack of communication between her and  the port surgeon contributed to the delays.

I am hoping that we are wrong but we now wonder if she delayed things because she was habilitating her office to provide chemo to her patients there. She had initially said that my sis would start in the hospital and then transfer to her office once it was ready to provide chemo. SO many weeks have passed since that appointment that her office is now ready and she wants my sister to have her chemo there, not the hospital.

 My sister worries more, unfortunately, because she has issues that are both real and imagined to make her anxious and paranoid.   I am trying to advocate for her but also trying to convince her that she has to take charge of her care when she is with the doctor, not complain and despair afterwards when she is home.  She does that a lot, live in the past, how they fumbled things in the hospital and afterwards, and she is right about those things. I try to reign her in, to focus in the present, because all we can do is vent about the past medical clowning. She is now worrying about lumps she feels in her knee, and the swelling in the eye, it is all signs of metastasis to her. My mom and I just listen and remind her that even it it is metastasis, the treatment is the same, the chemo.

If she was to tell me that she does not want chemo or radiation and just let the cancer take its course, I am ready to just be there for her. What I wrote here is what she can't share because she is not tecno savvy and I am mad that I failed to teach her how to use a computer while I visited.

As for your sister, being a nurse might be the downfall here for her, but it sounds like she cares for you so much that is driving you nuts! You seem quite competent to manage your treatment and might just need her love and support, not her medical opinion.  I truly hope that she can find acceptance in what you decide and I pray that you continue to have many more birthdays.

camul's picture
camul
Posts: 2038
Joined: Dec 2010

I wish you were closer so you could help as an advocate for her. As far as chemo, I also had my mastectomy first, then had to wait until I was completely healed before they would start the chemo on my first time around.

I am so glad with my second bout that they waited for the port to start the chemo as it is very hard on the veins. The second time around I too was told that 12 weeks was optimal but then decided to go with radiation on my hips and pelvic region first, as well as a second opinion. It all worked out. If it is a power port, it can be used almost immediately for treatment.  Mine was used the next morning.

For peace of mind, she has to be confident with her oncologist and to do this she will need your support. I live in Utah but got my second opinion from City of Hope in Duarte CA, and travelled to Johns Hopkin in Baltimore. They didn't see me at City of Hope but got all my records, biopsies, scans and bloodwork. They gave the identical protocol as my onco (which they did not have when they called me with their expert opinon), and what I got from the dr I saw at Johns Hopkins was nothing, she was mainly interested in a clinical trial which I had inquired about... I was very happy with City of Hope and it cemented my trust in my onco working in my best interest.  I agree with Jamie as far as trying to stay calm. I have 9 siblings who also had my best interest at heart, but too many opinions put so much pressure on me, they all felt that either MD Anderson, Mayo Clinic, U of Pennsylvania, etc all were better than here.

Finally, I started sending out an FYI group email to keep everyone posted, but didn't solicit advice. It keep them involved and informed, and I extended an invitation that if any are visiting (we all live in different states), that they could accompany me and ask any questions. So far 3 of my sisters have and they are now very supportive of the choices that have been made by my doctor, me, and my 2 adult sons. I am the 11th of 12 children so I along with my closest siblings have always been looked after by the older ones.

If 'she' is not happy with her doctors there, like Suzanne said there is Albequerque, or Pheonix has Mayo Clinic, and Salt Lake City has the Huntsman Center as well as Utah Cancer specialists.  All of these facilities are excellant cancer centers, all good in the treatment of breast cancer.

I wish you all the best, I know how hard it is to be so far away when you want to be there to help.

Prayers,

Carol

brunilda51
Posts: 6
Joined: Jan 2013

That is what I call taking charge of your care! That is all I am pushing her to do and not just accept the standard without corroboration from either studies/research or second opinion, is what she wants to do also.

How in the world did you manage that amazing feat of searching for that second opinion? Your insurance paid for it?  

That is what is despairing my sister, the inability to search for that second opinion, she feels the insurance won't pay. SHe worries about the cost and will probably stay put and accept what she gets in order to save money. She has voiced those concerns repeatedly as well as the fear that she is not getting the best care because of where she lives. If you only have two or three oncologists to choose from as well as a the same number of surgeons, it kind of make you helpless. She feels she is at the mercy of what the doctor wants to do.  I wish she would think about herself and herself only for once and act on what she keeps voicing she wishes she could do. Thank you!

jnl's picture
jnl
Posts: 3873
Joined: May 2009

Your post leaves me speechless.  I am very sorry for all that your sister is going thru now and for you and your family.  I do hope somehow it is possible for her to get a 2nd opinion.  Please have her check with her insurance.  Never give up!  Keep trying and keep us updated.

My prayers,

Leeza

camul's picture
camul
Posts: 2038
Joined: Dec 2010

Double post

Rague
Posts: 3305
Joined: Aug 2009

It is posssible that your sister's mental health AND physical health issues are part of the 'delay' in the care you want her to have.  You only have what she has told you (as you heard her) has been done/not done.  You mention she has a husband - what does he know or what has he bothered to do?

For you - to legally talk to her Drs, she has to list you with them as one they can talk to about her DX/TX.  Both Hubby and Son are listed with my DRs to ask any questions that they feel they need IF I can't/don't explain what is going on with me - they haven't yet but know they have the option if they feel the need. 

Stage III is only part of her DX - type (DCIS/DLIS/IDC/ILC/IBC), ER/PR and HER2 status also are involved in TX plan.

Give you sister positive support - not the negative.

Winyan - The Power Within

Susan

NorcalJ's picture
NorcalJ
Posts: 192
Joined: Feb 2008

You're a great sister, and asking a lot of very good questions.  The line from the port is the catheter portion of the port that takes the chemo, or any other med given, straight into her blood stream without damaging smaller vessels.  Chemo is a "visicant" which is a fancy way of saying it's really tough on the veins.  So, the port really is the best route, and (when done properly) is a much easier method for your sister in the long run.  It shouldn't take 6 sticks to get started when it's done correctly.  One stick for each time she has chemo, no pain beyond the initial stick, and no chance of an arm vein being damaged and swelling up and being painful.  A bandaid after the infusion, and she's done.

The low dose chemo may be due to her physical condition (aside from the cancer).  It's easier on the system.  If she's strong, maybe it could be changed to regular strength, or the dose dense eventually.

It seems like forever when you're in the middle of it, but by the time your finished, you turn around and say "that wasn't that long"! 

One of the best suggestiions I got for nausea was to munch on a little protein.  I'd wake up in the middle of the night feeling nauseated, and even though it always sounded yucky to eat something, I grabbed some turkey (or ham, or chicken), and it ALWAYS worked.

It sounds like you already do this, but before you go to the Dr. appt., write all your questions down, and don't let the doc out of the room until they've answered all your questions so that you understand the answer.  AND, write it down, because we all retain only about 10% of what's said.

Good luck to you both, you'll do well because your both very involved with the care.      

littleangel65
Posts: 46
Joined: Jan 2013

I know you a scared for your sister and frustrated, I come from a small town, where the hospital is a joke, I used to tell my husband, if anything seriously ever happens to me, don't put me in there, just drive the 70 miles, and get me to Springfield, MO.

Well due to the economy back in 2009, we lost everything in that small town, and now are living in the Springfield area.

And the weird thing is, back in 2008, when I first noticed a discharge in my right nipple, and my husband was only weeks away from being laid off at his job, I did go to my doctor for a mammagram and ultra sound, at the time, my doctor told me he didn't see anything, but that I should keep an eye on my breast.  (Well, with no more insurance, whatelse was I to do?)  duh

Anyway, when I finally did get a new job and ins. I did go to a  new doctor in Springfield, and he requested to see my last mammogram films, well, the weird thing is... that small town hospital first told me that I needed to sign a release which I did, not once, but twice, then when I called them back to tell them that Springfield has not recieved the films, now their excuse is, "well it must have gotten lost in the mail".  Really?  My medical records lost in the mail, um, you'd think they would have put a tracking number on it.

My point is this, I think that maybe they (the small town hospital) may have now seen something, but they didn't want my new doctor to see whatever was on them films, and now those films are gone forever.

Don't mess with this hospital, it can mean your sisters life, again, I don't want to scare you.  Even though for the most part I trust Sprinfield's Mercy hospital, I had a complicated type of cancer, at first they told me, if I was to have cancer, this is the way to do it, they told me it was localized, and thats a good thing, but, later, when I met my surgeon, he was concerned with my biopsy report, bc, it showed that I had cancer in my lymph nodes.  So, with that, my surgeon told me that I may have 2 cancers going on, ( he didn't have the final report in at that time).  But I didn't want to wait, I told him I needed to get a second opinion, and he understood, but he told me, whatever I do, wherever I decide to get treatment, he told me to make sure I get my right breast removed, and to let him know that I did it, if I were to go somewhere else for treatment, only cuz he said he wanted to make sure I didn't back out of the idea of having it removed.

Well, I went to Cancer Treatment Centers of America in Tulsa, my oco. agreed with my surgeon in Springfield,(so that made me feel better, that Sprfld. surgeon did know what he was talking about), but I did decide to stay in Tulsa, but during my 2 month stay for my raditation treatments last summer, I met another patient there, she and I got to be friends, she was on an extended stay too.

She had stage 4 breast cancer, and she was from Shreveport, LA. apparently, before she came to Tulsa, she was getting treated at a hospital in Shereveport (keep in mind, Sherevport being the size town that it is), the doctors there were giving her the wrong chemo, and she was trying to get to Tulsa on 3 occasions, but each time, she was just to sick from the chemo to make the trip, by the time she did arrive in Tulsa, the cancer had spread just to far, and for the 5 months she was hospitalized, and the surgeries that she had to endure, and the pain she went through, she finally passed away this past January.

So, please, if at all possible, get your sister to a different hospital, I have heard the same story from alot of patients that I have met at CTCA, that they to, started off getting their treatments at their hometown hospital, but, the bottom line, some of the onc in these hospitals just dont' have the full knowledge, and unfortunately some patients suffer for it, I can't speak for other cancer treatment hospitals, but, I feel very comfortable at Cancer Treatment Centers of America (CTCA), they specialize in cancer, and the treatments for cancer patients.

My husband works with a guy, whose wife also has cancer, but she goes to a cancer treatment center in St. Louis, and she is very comfortable with them, again, its a hospital that specializes only in cancer.

If you or your sister are having doubts about her treatment, see if her insurance will allow her to go to a cancer treatment hospital, I know with my insurance (I have at work, it allowed me), but now that I am on my husband's plan, Tulsa doesn't accept Blue Cross Blue Sheild, so now I am having to transfer to their sister hospital in Chicago, I don't like the idea of having to switch, especially since I've been in tulsa for over a year now, but at least I am still in the loop.   And if you should decide on Cancer Treatment Centers, call them, they do everything for you, they will check out the ins. plan for you, and if it works, they will set your sister up, they may even be able to help with her travel, it maybe worth the call.

I will keep you and your sister in my thoughts and prayers, God watches over all of us.

Take Care and keep me informed.  :)

littleangel65 

 

I hope and pray for all of us going thru this cancer stuff, its hard on the patient and the families, but I also know that treatment for cancer has come a long way, the key, is to get treatment, the right treatment ASAP.

 

 

brunilda51
Posts: 6
Joined: Jan 2013

thank you so much for sharing, I completely agree with you in that we have to keep watch on these medical "professionals" because some can kill us.  I live in NY and by law, we are supposed to get our mammo films, the originals, not copies.  I have every single mammo since 1998  in my posession. Before the law, I had to fight with an HMO to get the originals because they kept insisting in handing me copies. I am so sorry that your films were "lost" in that despicable manner! Maybe an attorney can help find them. Also, many places save the films digitally and  stored them in the hospital or imaging center's database.  They could be a copy saved that way. It is appalling how patients are played with! I am going to try and obtain all the medical records from the hospital that did only a sonogram of her right breast and nothing else. I can't believe that no MRI was done or mammo, especially when the tissue was dense. I guess they labeled her a hypocondriac and that was it!  I truly appreciate your input and will try to insist with my sis to ask questions and keep track of meds used and doses administered. After all that has happened to her, she should not be blindly trusting that they are doing things perfectly.  

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network