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bone lesion treatment plan distress
Hi all :)
Well, here is what is going on…
At my 9 month check up they found a bone lesion on one of my hips. They scheduled a CT guided bone biopsy but the CT couldn’t pick up the 1cm lesion. The oncologist told me “go home drink lots of alcohol and be very merry. We will bone scan in 8 weeks”.
I have been home since then and have become highly distressed over this plan. I am not ok with giving a bone met an additional 8 weeks to grow. I called and had bone scan, labs and MRI moved up to next week. Then dr office called and said the dr is adamant we wait the full 8 weeks. He has yet to return my call to explain the logic.
My last bone scan was in early October. ( Dr said I could pass on it in Dec if there were no abnormalities found). My phospates and chlorides have been increasing on the October and even more so on the Dec labs. If I understand correctly – these signify bone activity.
Has anyone with bone mets been told to wait like this? If so – why? It is not like I was told “The bc is only stage 2 – lets wait til it is stage 3 to do something”. I am really distressed here.
Currently this is what I am doing…
1. Ordered copies of labs, reports and films from the Dec check up to be sent to my local oncologist.
2. Scheduled appt with him on Monday to get his take on this and also to ask him to phone consult with atleast 2 other highly experience oncourolgists as to what their treatment plan would be at this time.
3. Trying to prepare a precise history and labs, films, etc to send out for another opinion asap.
I have great respect for the facility my drs are at and for them, but this illogical plan without explanation is not ok with me. I am hoping someone here can help me understand this.
God Bless, Holly -
13 Replies
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Thank you, Julie, for your helpful, detailed and compassionate reply. I understand now the past tense. After I finish with the forum, I’m going to write up questions to ask my dr. later today. As long as I get up the courage to ask, he seems to give pretty direct answers. Of course, sometimes, I don’t like what I’m hearing.
I’ll be thinkiong about you and your husband, too — Susan
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[quote author=mssmr link=topic=1677.msg12556#msg12556 date=1200490176]
Dear Julie – When you say “had” do you mean that he no longer has the lung tumor? Was it removed surgically or otherwise treated? I ask, because of my confusion about
not giving him chemotherapy if there IS a measurable tumor….I am so sorry he is having new pain and I hope for the best with his upcoming tests.
Hi Susan,
I used had because he had the tumor surgically removed in October. The nodule first showed up in a CT scan in March and repeat CT’s in May & July showed growth. In the spring they asked him to take tests to rule out Valley Fever and TB. In the summer the Dr. decided to do a needle biopsy of the nodule and that showed malignant cells but they could not tell if it was a original site or a metastasis. Dick’s Mother died of lung cancer and he is a former smoker. He was referred to a thoracic surgeon who said the tumor was operable. The pathology of the tumor after surgery was Transitional Cell Carcinoma which is the same as bladder cancer that is now in his upper tract.There was also a PET scan done and that scan did not show any other tumor sites. The reason stated for not doing chemo is there is no tumor to measure success. Also my husband has MDS which is a form of bone marrow cancer and is severely anemic. He is at the point of being transfusion dependent. The chemo would suppress his bone marrow function even more and the question becomes is the detrimental effect of chemo enough to offset the use until such time as there is evidence of a new site of metastatic cancer.
The concern is if the pain he is having means a lesion in the ribs near the original lung tumor site. The pain might be related to the previous surgery instead of a tumor. We are waiting for the results of the bone scan.
The oncologist did say the lung tumor was slower growing than most because usually they grow at a faster rate. I speculate that my husband’s chronic severe anemia kept the tumor growth rate down. There is some evidence that the hormone shots used to increase bone marrow production have increased tumor growth in cancer patients if their hemoglobin gets above 12. Many people get the shots when they are on chemo because the chemo affects the bone marrow function of producing blood cells.
We are still learning about what care is for people with metastatic bladder cancer. There are people on the Web Cafe email list that have had chemo and done very well which is encouraging.
I hope you can get some reasonable explanation for why they are not directly treating the lesion.
Julie
Volunteer Coordinator
ABLSC
[quote author=mssmr link=topic=1677.msg12556#msg12556 date=1200490176]
The message I am putting together indirectly is that oncological teams
do not want to “go for a cure” unless there is not only full removal
of the bladder tumor and either no mets or an isolated met that seems
fully to respond to treatment (surgery, radition, chemotherapy).
Given multisite spread, we are opposed in our quest for aggressive
treatment to remove/control as many mets as possible and expected to
be satisfied with supportive care in response to pain and other distress.
I wonder what would be the “cost” (penalty or punishment) to the oncological team for trying to cure someone, me for example, and failing to do so? I hope it wouldn’t be just a hit to ego. I also wonder where the “standards” I think I am discerning are coming from and hoping it is not the insurance industry….I know there are government treatment tables….are there accreditation or certification penalties for trying harder then they suggest?Incidentally, I am SO happy and relieved that the forum is back after its brief hiatus (that didn’t seem brief). I missed you all — my best, Susan (mssmr)
[/quote]Dear Susan and other warriors on this thread,
There are a couple of good studies done on surgical removal of small volume mets increasing survival, both referenced in the side bar here:http://blcwebcafe.org/metatcc.asp
It’s something to bring up. I think response to chemo was a pre-requisite. I have a copy of the Japanese artilce from ’07, if you want it, let me know and I’ll email you.
Yes, it was not nice that the forum was down!Perhaps I should start a thread= once we find out what the problem actually was. It was taking so long to fix we just switched servers instead!
Take care,
Wendy
[quote author=mznoregrets link=topic=1677.msg12426#msg12426 date=1199897822]
Hi all :)Well, here is what is going on…
At my 9 month check up they found a bone lesion on one of my hips. They scheduled a CT guided bone biopsy but the CT couldn’t pick up the 1cm lesion. The oncologist told me “go home drink lots of alcohol and be very merry. We will bone scan in 8 weeks”.
I have been home since then and have become highly distressed over this plan. I am not ok with giving a bone met an additional 8 weeks to grow. I called and had bone scan, labs and MRI moved up to next week. Then dr office called and said the dr is adamant we wait the full 8 weeks. He has yet to return my call to explain the logic.
My last bone scan was in early October. ( Dr said I could pass on it in Dec if there were no abnormalities found). My phospates and chlorides have been increasing on the October and even more so on the Dec labs. If I understand correctly – these signify bone activity.
Has anyone with bone mets been told to wait like this? If so – why? It is not like I was told “The bc is only stage 2 – lets wait til it is stage 3 to do something”. I am really distressed here.
[/quote]Dear Holly,
I am puzzled as well. It could be that the mets are not big enough to judge which treatment might be best. Maybe radiation at this point would do collateral damage without enough benefit to outweigh the risk?
Here are some of the issues on treating mets (from the article on WebCafe);
Will further treatments improve my quality of life?
Will benefits outweigh risk and discomfort?
Will further treatments add to survival?
What feels most comfortable to me?
Do I feel I can manage the side effects of each treatment option? What kind of support will I have from family or friends? Outside agencies?Many studies cite the addition of 2-3 months to a person’s life as justification enough for aggressive chemotherapy. Ask your doctor how many patients he’s treated with the same therapy and how the patients did. Palliation of symptoms alone is still a valid goal in metastatic cancer.
Because the needs of metastatic patients are highly individual and many of the treatments are still experimental, there are no standard guidelines available to either the patient or the doctor. In some cases the decision is determined by whose opinion you seek — a surgeon will recommend surgery, an oncologist chemotherapy or a radiation oncologist radiation therapy. Often, the patient and family must decide on the course of treatment. .
Bone Metastasis
Aside from causing pain in up to 70% of people afflicted, the most serious implication of bone metastasis is that they increase the possibility of “pathological fractures”, so named because they are due to problems within the bone itself rather than to external factors.Metastatic bone lesions can be described as osteolytic, osteoblastic and mixed. The osteolytic lesions are most common where the destructive processes outstrip the laying down of new bone. Osteoblastic lesions result from new bone growth that is stimulated by the tumor. Microscopically, most lesions are mixed.
Treatment for bone metastasis is normally palliative. An assessment of the risk of pathological fracture must be made by an experienced orthopaedic surgeon. Lesions that do not represent a risk for fracture may be treated with radiation or by appropriate chemotherapy directed at the tumor.
Where a weight-bearing bone, such as the leg is involved, your doctor may suggest an operation to support the bone and prevent a break. This procedure will involve reinforcing the bone with internal splints and may help relieve pain and prevent a break. The goals of surgery are to preserve stability and function of the musculoskeletal system as well as alleviate pain.
The ribs, pelvis and spine are usually first affected. Pain, which resembles ordinary low back pain or a disease such as arthritis, is usually the first sign. Standing up on the bone may compress it, causing more pain than when lying down.
Another risk from bone metastasis is hypercalcemia (a higher concentration of calcium compounds in the bloodstreatm). This condition can cause a number of symptoms, including dehydration, loss of appetite, nausea, thirst, fatigue, muscle weakness, kidney problems, restlessness, confusion and even death.
For an article with everything you wish you never needed to know about bone metastases: http://www.emedicine.com/radio/topic88.htm#section~mri
Zometa for bone metastases/hypercalcemia
Bisphosphonates work by slowing down the actions of bone cells.
Bisphosphonates (clodronate, pamidronate, aredia, zometa), a family of drugs used to treat osteoporosis and the bone pain caused by some types of cancer, have been investigated in large trials for breast and prostate cancer with good results at relieving bone pain and perhaps even slowing destructive processes.Zometa, the youngest and easiest to use of the bisphosphonates, was first approved for the treatment of hypercalecemia. In February, 2002, The FDA approved Zometa (Zoledronic Acid) for patients with documented bone metastases from solid tumors, in conjunction with standard antineoplastic therapy. The trials that led to the approval of Zometa mark the first time any bisphosphonate has demonstrated efficacy in treating bone complications in patients with prostate cancer, lung cancer and other solid tumors (including bladder tumors). see; http://www.zometa.com/index.html
One potential potential side effect of Zometa included kidney damage, which can also occur with other bisphosphonates.
Dear Julie – When you say “had” do you mean that he no longer has the lung tumor? Was it removed surgically or otherwise treated? I ask, because of my confusion about
not giving him chemotherapy if there IS a measurable tumor….I am so sorry he is having new pain and I hope for the best with his upcoming tests.
I have an extended appointment tomorrow with my medical oncologist and am determined to ask as many direct questions about treating metastatic bladder cancer as I can! As I believe I mentioned before on the forum, one concern I have is that none of the presumed “mets” that have shown up in imaging have been biopsied so that
there really isn’t confirmation that they are, indeed, spread of my bladder cancer or even malignant. (Both of my parents had lung cnacer when they died, I wonder if I have a second primary, for one thing.) I imagine that there is a good chance that they are metastatic — but I wonder why my team doesn’t think we should investigate that. For one thing, it makes it hard to fill out questionnaires for clinical trials.Maybe if some of you send me questions, I can ask those, too. It seems we all wonder what the “gold standard” might be for treating metastatic bladder cancer — or at least if there is anything like consensus on high quality treatment given specific manifestations of spreading.
The message I am putting together indirectly is that oncological teams
do not want to “go for a cure” unless there is not only full removal
of the bladder tumor and either no mets or an isolated met that seems
fully to respond to treatment (surgery, radition, chemotherapy).
Given multisite spread, we are opposed in our quest for aggressive
treatment to remove/control as many mets as possible and expected to
be satisfied with supportive care in response to pain and other distress.
I wonder what would be the “cost” (penalty or punishment) to the oncological team for trying to cure someone, me for example, and failing to do so? I hope it wouldn’t be just a hit to ego. I also wonder where the “standards” I think I am discerning are coming from and hoping it is not the insurance industry….I know there are government treatment tables….are there accreditation or certification penalties for trying harder then they suggest?Incidentally, I am SO happy and relieved that the forum is back after its brief hiatus (that didn’t seem brief). I missed you all — my best, Susan (mssmr)
Treatment of metastatic Bladder Cancer sure is puzzling. I don’t know why some people get chemo and others are told we will scan you frequently. My husband had a lung tumor that metastasized from his bladder cancer and at present there are no other sites so the oncologist said no chemo as there is no way to measure success without a tumor. Now Dick is complaining of pain in his ribs so more scans are scheduled for next week including a bone scan. What we don’t know is if there is evidence of another metastasis will any treatment be recommended. I feel you and we are hanging out here to dry.
Volunteer Coordinator
ABLSC
Hi Holly
Can’t offer you any explanations on how your doc is responding to you. Just wanted to let you know I am thinking of you during these challenging times. I hope you can find some positive answers soon.Maria xx
Holly — I, too, have had supposed (or presumed) “mets” seen with scans, but I, too, have found no rush to follow up, even with a biopsy. The plan for me seems to be to let a “met” “act up” before treating it. I am working up steam to push for
tests confirming these are actually malignant and metastatic. I can see myself getting a new team, too, to treat as best we can whatever I actually have. My bladder cancer is TCC with sarcomatoid features. They call it stage 4, but I have no patholgical confirmation of any presumed “met” only statements such as “consistent with metastasis” on my mri report.In solidarity and in a sisterhood of hope — Susan (mssmr)
Hi Karen,
The other cancer found in RC pathology was urachal…it is rare, chemo resistant and has poorer prognosis than TCC.
I have never been happy with the waiting involved when it comes to patholy or test results, but I have not before heard “to wait to treat cancer until it hurts” . After my oncologist explained this to me, I was stunned. Even several hours now I think what he used alot of words to say is, “palliative care”. My hubby who heard the entire conversation took it that way too. Needless to say, I am researching not only further treatments, but even a new team if need be. This chick is not done yet.
Thank you for the update on the trial. I hope it works :) You are in my prayers.
I did get on the mailing list!!!! It can be done lol
God Bless, Holly
Holly,
I am sorry that you are feeling, and experiencing all of the emotions that come with this disease…mainly frustration at the waiting time that is expected.
If I remember correctly, don’t you have 2 different types of Cancer? If that is in fact the case, please remember that other metastatic cancers can be put into remission easier than bladder cancer ( and it is possible to get a remission with bladder cancer too). Maybe the leison they found could possibly have spread from the other site?
I just posted about a Clinical Trial we just had an appointment about.
You are in my Thoughts,
Karen
Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.Life isn’t about how to survive the storm, but how to dance in the rain.
Hi mighty warrior woman…Athenia….it was Athenia, right? See, I’m having to check my ole brain cells again. I’m hoping it is a B-12 shortage that I have.
Anyway, dear Holly, am keeping you in my thoughts and prayers and have friends praying for you as well, that this latest challenge will soon be under control It
sounds like you are doing all that is possible to take control of the situation and as always, I applaud you for your strength and valor. I know any of us in your situation would be anxious and fearful…I pray that God surrounds you with all the love, support, comfort, kindness, medical expertise, that you need and most especially peace of mind. Take care, dear friend. Melodie
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright
Dear Holly,
Firstly I just want to say that I am thinking of you during this time.
I wish I could give you some answers to your questions unfortunately I am unable to do so. I am sure however that help is on the way from our Forum friends whom have experience in this area.
Decisions made by oncology professionals puzzle and frustrate me sometimes. It is as though they are forced to follow protocol on standard treatments.
It would make sense to me to start a treatment now to blast that lesion in your hip to smithereens and banish it forever. Waiting for the lesion to be symptomatic sounds like madness to me although I am no doctor.
The fear and frustration you are feeling right now I cannot take away, but I am certain from your previous posts and advise for others, you have the strength and courage to find the answers and treatment you deserve.
Take care Holly.
Leigh
Leigh, 39
Dx July 2007
TURBT July 2007
RC/Neobladder ,Studer Pouch, September 2007
Erasmus Centrum Rotterdam
TNM Classification: pT4 N2 Mo
4 cycles aduvant chemo Gemzar & CisplatinumWell, the dr has finally called and explained his clinical logic…
Until the lesion is symptomatic – they do not treat it. Even in Feb when the bone scan, MRI, labs etc are done; if they find other lesions – there is no treatment til there are symptoms. And at that time – one lesion can be radiated, but if there are more then we do chemo. But the likelyhood that chemo will cure it is not likely. He acknowledged it sucks and also that anxiety is no fun. I sit here aghast, scared and frustrated.
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