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Question about masses forming during chemo Question about masses forming during chemo

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  #1  
Unread 05-13-2004, 06:34 PM
Question about masses forming during chemo

Hi all,

It's been a while since I've posted and sorry..... this is long.

I've been getting treated for small cell uterine cancer that had metastisized (2 small masses in lungs, 2 in brain). Was staged on Jan. 19, 2004 during a TAH (with vertical incision) as well as removal of cervix due to abnomal paps in the past.

I started chemo 3 days after surgery: carboplatin and etoposide. I started the first day of my 5th chemo today. It was delayed a week due to my white blood cell count being 1.1, then delayed another week because my count was only 1.2. I talked to my oncologist about my concerns with delaying chemo because this is a highly agressive cancer and metastisizes quickly. I asked about getting a neupogen shot which I have never had before but didn't see my WBC counts coming up fast enough to have chemo by today. First, the oncologist spaces out that I asked for a neupogen shot so I end up going back into his office to confirm that yes, I want a shot. I also haven't had a CAT scan since my treatment started. They did an MRI right after surgery to find any other masses but nothing since then. I'm thinking they should've done this sooner because now I've got a 4.3 cm sized mass in my abdomen. They didn't get the results of the CAT scan completely into the computer yet because it was done yesterday. Needless to say I'm very upset right now because I don't know what if anything it's attached to. I'm also worried because it has started to cause me pain. I'll wake up after 4 hours having to go to the bathroom (#1) and then I can not find a comfortable position to lay down because the mass is causing me pain. When I showed up at 11:30 AM for my oncologist's appointment, which I confirmed last week over the phone, I found out that someone had canceled it. In fact the chemo nurse I talked to said that I had "fired" my oncologist so the appointment was cancelled. That was totally NOT the case. I had only asked my oncologist if I could get a second opinion (I'm locked into Kaiser right now) within the group. There is an oncologist there that has quite a bit of experience with uterine cancer. My ONC said that would be fine with him because he's never dealt with this type of cancer, said I have a rare form that he can not tell if it originated in my lungs (I'm not a smoker but was exposed to 2nd hand smoke as a child) or in the uterus. He has never dealt with uterine cancer.

I have also found him hard to talk to. He has the style that he won't tell the patient anymore than he feels he needs to yet I'm the kind of patient that fills in the blanks with whatever is floating around in my imagination. I had a friend go with me to this appointment today and the doctor was behaving differently.... even smiled! OMG! He never smiles! I was shocked!

I really was afraid that another mass would happen when they delayed my chemo..... can a 4.3 cm mass develop within a few short weeks? It certainly shouldn't have been growing during chemo and my numbers looked good: CA 125 was 23.8 and CEA was 6.6. I know the CEA should be lower.... 3.5 would feel wonderful to me!

I sit here worrying about this now found mass. Can some masses form without attaching to anything? Or is it more likely that it's sitting ON my bladder or some other vital internal organ? My ONC said either way they probably wouldn't try to remove it because it would delay my chemo. I find it tiring and troublesome that suddenly he's developed a concern about delaying my chemos at all. I was worried about it before.... why NOT him! Oh I get it... it's not HIS body so why worry about it! He was originally anti my getting any neupogen shots and now he's all for it.... I get 2, 1 5 days after chemo and the 2nd on the 6th day. OMG! This had got me freaking out! I had some "gut feelings" that delaying chemo was going to be risky but now I KNOW for me it's a fact!

I don't go to the consult with the other ONC until May 24th. suddenly 11 days seems like a dangerously long time. What if it wasn't attached to anything and attaches during that time frame? I certainly don't want it near my bladder! I went to my support group last week and talked to a former patient of the ONC I'm going to talk to on the 24th. She said he's an excellent ONC. In fact she was a stage 4 patient and is now in complete remission after 6 cycles. She said to definitely talk with him especially since I don't have any choice but Kaiser.

In the meantime I keep hearing the nurse's words "but you fired him" because she said it several times but agreed to see if my ONC had time to meet with me. I didn't fire anyone, I just wanted a second opinion from a more experienced ONC. Why would she try to add to my stress? VERY confused. I was about to walk out of there without chemo at all especially when I found out she was the nurse that was going to set up my IV. I don't have a port and she pin cushioned me 2 times.... tears were streaming down my face because it hurt so bad. Other patients there tried not to stare thank GOD! Another nurse came over.... she was able to get the IV going in a good vein but not before I hesitantly asked her how long she'd been doing this sort of stuff.
She was vastly more professional and nicer than nurse Ratchett.

My ONC wanted to treat me like a long-term cancer patient, meaning I could be on lower doses of chemo for months, years. That is not a good option for me. I was a runner and always athletic and active before this cancer. I can not imagine having half a life. I've been running even though the Cisplatin makes me short of breath. I've always done a lot of high altitude hiking, love flying and rock climbing as well. I've tried walking but it doesn't give me the adrenalin. In fact it drives me nuts! I would volunteer at the wildlife refuge center again but my low WBC won't let me tolerate all the bacterias, feathers, mess of the birds although I love them very much. I can't figure out a substitute for the activities I love. The only option in my opinion is to do a 2nd surgery and remove as much of this 4.3 cm mass as they can. Or cyberknife it. If it's small enough then the chemo should be enough to wipe the rest of it out. I want it out now preferably. My current ONC is opposed to this notion even though he doesn't have the full report from the CAT scan yet. I don't think it's fair to make that call until the scenario is completely evaluated.

The way I see it is that they "cure it" (remission) or I go to a state with legalized euthanasia and get it over with. I can not see doing this for years with such a low life expectancy. I know they are just using statistics but it still hurts.

I could really use some insight from some of my Hystersisters right now. Trying to keep from crying anymore in the meantime because my support group doesn't meet again until next Wednesday.

In the meantime I'm so upset that I didn't have insurance for about 3 years because the economy was so blasted bad I couldn't use my B.S. in Computer to get a job and couldn't afford ~$300 per month in COBRA payments. I kept putting off medical care because I didn't know about Indigent insurance! I put myself through college so I could take care of myself and now it seems like I can't no matter what I do!

Linda

Stage IV small cell uterine cancer. TAH on 1/19/04. Uterus the size of a 5 month pregnancy due to various fibroids.
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  #2  
Unread 05-13-2004, 07:32 PM
((((LINDA)()))

You're in a very hard place. A couple things come to mind. One--is this new oncologist a gynecological oncologist? With a gynecologic cancer, these doctors are the specialists. Can you get a referral to a gyn/onc where you live? Second--it is never wrong to get a second or third opinion. Some doctors definitely do not like this--I had one. You do not "fire" a doctor when you ask for a second opinion--you "fire" a doctor when you actually fire him or her. If you are having problems with this doctor or the staff, yes, a change may well be in order. Third--cancer is a very hard thing to go through emotionally. The ups and downs are great and the downs are the absolute pits. We are supposed to be positive, remain positive, look on the bright side, etc. There just are times when you can't. Have you talked with a social worker or therapist? I have a social worker/therapist I see monthly and it is absolutely lifesaving for me. I would also not give up my Celexa for anything. I still have ups and downs, cry and get scared, but that part is much better than it has been. Plesae don't give up yet--give this new oncologist another chance and express your fears about the mets and the 4.3 cm mass and do ask if this Dr. knows any gyn/oncs for you to co-consult with.
(((((hug))))) Ellen
  #3  
Unread 05-13-2004, 10:57 PM
Question about masses forming during chemo

Ellen,

Thank you so much for your reply! I hear what you're saying about getting 2nd, 3rd opinions, etc. I spoke with my ONC last week about getting a 2nd opinion and who he knew would have more experience with GYN/ONC. He seemed to be fine with the idea so I was confused by the nurse's reaction.

The Kaiser here in Denver does not have a GYN/ONC in the ONC department. When I met with the surgeon in the Pelvic Surgery department I was told he was a GYN/ONC. Kaiser had him do the surgery and then I was handed off to an ONC. It's not a good way to do it in my book but I'm locked into Kaiser and don't know where else I can go unless there is a Kaiser elsewhere within the U.S. that has GYN/ONCs that continue to follow patient care from day one to remission and follow-ups. However I will be checking out clinical trials because I heard that the University of Colorado Medical Center does them but because I've already had some chemo and radiation may make me not the ideal person for a controlled study.

I've been given the name of a Kaiser psychologist that has worked with cancer patients. I'll be giving him a call tomorrow. It always seems like there is so much to get "hit with" when I walk into Kaiser. I guess one of the reasons I was so upset was that the nurse was talking to me about it in front of a lot of people waiting in the reception area.

Also talked with a friend tonight that suggested this mass could be a lymphocell. She said that they can cause quite a bit of pain and get large quickly. I had a feeling that the ONC had talked to the radiologist but was not sharing everything until he had a written report. A mass developing that quickly seems at odds with the downward trend of my markers so I'm going to wait and see what the 2nd ONC says. On pins and needles until then!

Thank you so much for your encouraging words. They mean a lot to me. I've been reading a little about your own struggles and I admire how you've been coping with everything. You truely are one of the bravest people I've ever known.

Linda
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  #4  
Unread 05-14-2004, 01:00 AM
Question about masses forming during chemo

(((Linda))):

You don't say what sort of "mass" they have found; if it is a cystic structure it could well be a lymphocele, not uncommon after lymph node dissection.

About "firing" your doctor: First of all, it sounds like this nurse has drawn her own conclusions. She has a supervisor; I realize it's a lot to deal with right now, but I would certainly look into who that supervisor is (or look into an ombudsman -- Kaiser here in LA has them) and complain about the unprofessional behavior. The new privacy laws are very explicit about this sort of treatment, particular the discussion of your circumstances in front of a crowded waiting room. Also, the laws in most states require a written "firing" of your doctor -- a request to be released from his care. Since you are asking for a consult within the network, there should be absolutely NO problem with the second opinion -- and since the medical records are all networked within the system, you don't even have to request that they be released the way you would if you were on the "outside."

I'm glad you're able to at least continue what workouts you can -- there is evidence that exercise improves outcomes (I think (((Sirensong))) just wrote about this recently). But I would also back up (((Ellen's))) urging about getting therapeutic support, especially since there is a therapist within the system that you can see.

Also, the Kaiser here had a provision that, if they could not provide a particular type of specialized support, you did have a mechanism to be referred out of the network, something that we had to do with my DD's care when she was a baby. It was not a problem; they had only one sub-specialist for our region, and her schedule was full. Additionally, we had wanted a second opinion from our pediatric hospital (which was across the street from our Kaiser -- I also worked there). It was not an issue, although it took a bit of straightening out on the out-of-network end.

I can only imagine your distress at not only this news, but at the way you're being treated, both emotionally and medically. My thoughts are with you, and I sure hope that this new oncologist is more helpful to you (since uterine cancer is a far cry from the other cancers that most oncologists deal with, such as colon or lung or lymphomas). If your pain really escalates, though, you need to get seen in the emergency room. It's not impossible that, given the low blood counts, you've maybe picked up a pocket of infection. I've seen that happen with other patients with low counts -- it's not common, but a real possibility.

I sure hope you're getting some answers, relief, and support -- and SOON!!!



Audrey
  #5  
Unread 05-14-2004, 01:32 AM
Question about masses forming during chemo

Dear Linda,

I am sorry you are going thru this and the way you are treated seems very wrong . Ellen and Audrey gave you wonderful advice. I hope this Dr you see on the 24th is much better.
I had to wait 3 months after my tumor was found for the insurance company to authorize an oncologist but when I finally saw the oncologist, he was examined me, and called for a second opinion himself.
Do you have someone who can be an advocate for you in getting the expert, compassionate care and info you need. My husband did that for me so I could just concentate on getting well and it made a huge difference.
I am also active, walking my dogs, skiing, rollerblading, hiking, and remained as active as possible during treatments, but rested when my body told me too. I think exercise helped both physically and emotionally, but listen to your body. Fighting cancer is more of a workout than climbinng Everest. Hang in there. Powerful prayer are being said for you.
  #6  
Unread 05-14-2004, 06:28 AM
Question about masses forming during chemo

Linda,

I'm glad that you are receiving and feeling support here--please don't give up. It sounds like there are other possibilities besides rampant cancer that couod be causing some of your problems--and yes, a gyn/onc is probably the way to go.

You are being held in prayer. Some of the most valiant women in the world are here at Cancer Concerns, and you can be sure that they will be here to pray for you, support you, and walk with you as you continue this journey....hopefully, a journey that brings positive outcomes!

Keep us informed...we'll be waiting to hear.

Blessings.
Marlene
  #7  
Unread 05-14-2004, 08:08 AM
Question about masses forming during chemo

Linda,
When they did the scan, could they tell if it was a solid mass or a fluid filled mass?

You say you just got your fifth chemo yesterday. So you will see this new onc. the 24th, right?

You have done absolutely all you can do. The chemo is in you and working right now. I am assuming you are on a three week cycle?

This appt. will be before you are due for another chemo.
Right now you concentrate on getting through these '7 days of chemo'.

My prayers will be with you. Do not give up. I think you have just been running into some very uncaring medical people.

nancy j
  #8  
Unread 05-15-2004, 04:07 PM
Question about masses forming during chemo

When the ONC told me I had a mass he didn't tell me if it was solid or fluid filled. He didn't even tell me about the possibility that it could be a lymphocele even though my CA numbers were in the normal range for at least my 2 latest chemos. He seemed to know about the CAT scan but could've been waiting for the radiologist's report. I'll follow up with them next week to see if I can get better information before my consult on the 24th.

A friend of mine (in Washington state) has some medically savy friends here in the Denver metro area. She's going to see if one of them can go with me to the consult.

Because my WBC and neutrophil counts were so low my ONC delayed chemo for a week. Within that week the WBC counts went from 1.1 to 1.2. I was afraid that another 7 day wait would only yield a 1.5 or something like that so I persisted in asking for a Neupogen shot. I didn't want to wait more than 5 weeks for my next chemo cycle because this is an agressive cancer. I was supposed to be on a 3 week cycle.

I am feeling better now.... my last dose of chemo is today. I take the Etoposide at home. The ONC reduced my carbo from 550 to 400 and the Etoposide on days 2 and 3 by 50 mg (1 less capsule). I agree that the chemo probably needed to be lowered because of my WBC counts not rallying and dropping so low. The pain in my abdomen has gone for now but I haven't been running or hiking (not during chemo) so perhaps it'll return when I get active in the next day or so. Hope not!

Thank you everyone for your support, advice and words of encouragement. There are times when everything just gets too overwhelming and the stakes are so high anyway.

I wouldn't know what to do without the insight and courage of all of my Hystersisters. I am blessed to have such good company through this journey and to help where I can too!

s
Linda
  #9  
Unread 05-15-2004, 04:20 PM
Question about masses forming during chemo

Linda you are always here for us to give us support and 'hugs'. Let us all try to help carry some of your burden for you now, okay?

I'm sure I speak for all here.....don't sit at home and fret. Come here and let it all out. Somebody will be here in a few minutes and share your walk with you.

Blessings,
nancy j
  #10  
Unread 05-15-2004, 07:10 PM
Question about masses forming during chemo

You certainly have a full plate, there, Linda. I'm sorry you have to deal with all this. It sounds like that nurse is very unprofessional and insensitive which is unusual considering that most of the people in the oncology field are super professional and sensitive. Well, at least that's been my experience.

I hope that God brings you to the right doctor with the right answers to all your questions. You know, hospitals all have "patient advocates", I'm sure that Kaiser has one, too.

Good luck, Linda. Let us know how you're doing.
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