Wegeners and cancer

[chrisTIn@]

Although my Wegs/GPA is in a (medicinefree) remission I feel scared and insecure.
Last week I was told I have breastcancer. Have to go to the surgery within a few weeks.
Tomorrow me and my husband will have a second consultation at the hospital.
I told the mammacare-team I have Wegeners/GPA, so they will contact my Wegs-specialist before surgery.
Although the care, information and coaching is intensive and good, it's an awkward experience to have this new disease.
I remember forummember Jack saying: "Having Wegeners doesn't mean you can't get anything else'.

Is there information on here about people with Wegs as well as (breast)cancer?
I tried to search it but couldn't find it.
What do you people think I should tell or ask the doctors/nurses that are on my case?
Any advise?

Christine.

[drz]

I know I was told I was at increased risk for several types of cancer because of my treatment for Wegs. Breast cancer was one of them so i get annual check ups for it. Much of the cancer treatment like using Rituxan can be same for both Wegs and cancer.

The main concern will be surgery or radiation treatment or the stress of having another diagnosis and treatment stimulating a flare. But if you are now in drug free remission your immune system should not put you at special risk during the treatment like it does when severely compromised from one of our many nice drugs, especially CTX.

So my best guess would be you only need to monitor for a possible flare but most of that will be covered i bet by their regular monitoring for the progress in treating the cancer. I hope you have been diagnosed early enough so the prognosis is great and required treatment will be on the minimal side. Best wishes for successful treatment and quick recovery.
DrZ

[Meredith]

I have had Weg. for about 8-9 years now - was just diagnosed with CLL - they think I have had it for a long time. The Rituxan treats not only Weg. but CLL also. Besides feeling tired I really cannot tell the difference. I do go in yearly for breast/pap exams. My prayers will be with you for your surgery.

[chrisTIn@]

Thanks drz and meredith.

I hope you have been diagnosed early enough so the prognosis is great and required treatment will be on the minimal side.

The tumor is still small. About 8,5 mm, not larger than 1 cm. The biopt they took showed that the tumor is responsive to hormones.
That seems to be a good sign, they can treat that with medication.
The plan is to remove only the affected tissue, not the entire breast. Afterwards they do radiotherapy, no chemo so far.
But that plan can change when they have investigated the affected tissue after surgery.

Thanks a lot for your messages. Mederdith, what is CLL?

[lag713]

I'm sorry you received this news, Christine. Jack was right when he said, "Having Wegener's doesn't mean you can't get anything else". I did not find much but here are a few links. I hope you have a successful, expedient treatment and recovery.

Although breast involvement is rare, I hope your physicians have ruled out the possibility that the symptoms you have are related to Wegener's.
Case1: Wegener's granulomatosis masquerading as bre... [Arch Intern Med. 1995] - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/7811131)
Case 2: Wegener's granulomatosis of the breast: A case ... [Pol J Radiol. 2014] - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/24883143)

Cancer generally and Wegener's
http://onlinelibrary.wiley.com/store/10.1002/ijc.10444/asset/10444_ftp.pdf;jsessionid=3411C618E49BECC2043304C9E 22D2989.f04t03?v=1&t=hy7c5m88&304b2108

Quick interpretation of this article (I have some training in epidemiology):

1. We are at greater risk of developing liver cancer, squamous skin cancer, bladder cancer, brain cancer, haematopoetic cancers, malignant lymphoma, and leukemia.

2. Page 83- Any confidence interval with a range from above 1.0 and up is considered to mean that you have an increased risk of that cancer (e.g. Bladder cancer CI = (2.6–8.1)). The authors found that Weggies are 4.8 times more likely to have bladder cancer but they are not 100% confident of that risk. They are confident that Weggies are somewhere between 2.6 and 8.1 times more likely to have bladder cancer.

3. Page 83- Any confidence interval with a range from including and below 1.0 is considered to mean that you DO NOT have an increased risk of that cancer (e.g. Breast cancer CI = (0.2–1.5)). The authors found that Weggies are 0.6 times more likely to have breast cancer (aka we are at a lower risk than the general population) but they are not 100% confident of that risk. They are confident that Weggies are somewhere between 0.2 and 1.5 times more likely to have breast cancer (aka neither more or less at risk than the general population).

4. An incidence ratio of 1 is equal to the risk of the general population (aka no additional risk of having that type of cancer). An incidence ratio under 1 means you have a protective factor and are less likely than the rest of the general population (aka less risk of having that type of cancer)

5. This is only one study and it is 12 years old so the results should be taken with a grain of salt.

[lag713]

It seems as if I missed your follow up messages while writing the one above. I'm glad that the tumor is responsive to hormones. That's good news!

[chrisTIn@]

Hey, lag, thanks for the links! Very informative, I'll take a closer look soon.



Although breast involvement is rare, I hope your physicians have ruled out the possibility that the symptoms you have are related to Wegener's.


I've had several investigations in the past few years to rule out lung-involvement, so that should be allright.
The tissue has already been in the lab, and was identified as an invasive ductal (? don't know if this is the correct term in English) carcinoma. Not a granuloma as from Wegs.

[mishb]

Christine, a lady in our Australian facebook group was diagnosed with breast cancer last year.

She left the group for some time and actually came back on last night (it must have been for this reason) to let us all know that her radiation treatment has been completed, as she is cancer free.

I am so sorry that you have to deal with this issue, but I know that you too will get through it ............ we are weggies, we can get through anything :hug2:

[Pete]

Hi Christine,

I hope your treatments go well and that you're back to normal soon.

[Wegetarian]

I

2. Page 83- Any confidence interval with a range from above 1.0 and up is considered to mean that you have an increased risk of that cancer (e.g. Bladder cancer CI = (2.6–8.1)). The authors found that Weggies are 4.8 times more likely to have bladder cancer but they are not 100% confident of that risk. They are confident that Weggies are somewhere between 2.6 and 8.1 times more likely to have bladder cancer.

Maybe that is related to CTX treatment which is so common with Wegs, especially as you said the report was 12 years old so they probably looked at cases where they had followed up on Wegs for quite a while.

Another thing that is worrying is that a nutritionist told me that having an auto-immunity disease means you are 5x more likely to get another auto-immunity disease.

About the breast cancer, a Weggie in a local FB group also had Wegs + breast cancer. I don't know all of the details but I think there were some problems in treating both at the same time since I think the Wegs was active. Anyway, she pulled through but I guess the treatments were quite rough.

[drz]

Besides the CTX increasing our risk for cancer, there was also the numerous x-rays and scans to monitor bleeding in the lungs for those of us so afflicted.

[chrisTIn@]

Besides the CTX increasing our risk for cancer, there was also the numerous x-rays and scans to monitor bleeding in the lungs for those of us so afflicted.

That's something I worry about... I've had quite a few X-rays and two CT-scans in the past years. Also my dentist takes x-rays every two years, and I am tested for breastcancer every two years with several X-rays each time.
A radiologist I know talked with me for quite some time, but he cannot say how much radiation is too much.
He did tell me that the x-rays that are used in CT-scans are 'harder' rays, that are less absorbed by the body than the 'softer' rays that are used to monitor female breast-tissue.
I worry if, besides the fact that my immune-system is compromised, the radiation that I absorbed played a role in the development of the tumor that I have now, but I guess I will never find a 100% accurate answer to that question.
I will have to deal with these insecureties...

Statistics say that in my age group (50 and up) most new cases of cancer are breastcancers. Also with women who are NOT immunecompromised.

[Jaha]

Christine,

I am sorry to hear that you now have this to face. I hope that everything turns out alright for you. It was good for you to have the surgeon contact your wegs doctors. It seems like they found it quickly. Wishing you all the best with your surgery and treatment.

[chris.wg]

Christine, I wish I had advice for you. Unfortunately this has never been anything I personally researched. You will be in my thoughts and prayers. Just stay strong weggies are built stronger then the rest which is why we were given this particular burden to carry.

[drz]

That's something I worry about... I've had quite a few X-rays and two CT-scans in the past years. Also my dentist takes x-rays every two years, and I am tested for breastcancer every two years with several X-rays each time.
A radiologist I know talked with me for quite some time, but he cannot say how much radiation is too much.
He did tell me that the x-rays that are used in CT-scans are 'harder' rays, that are less absorbed by the body than the 'softer' rays that are used to monitor female breast-tissue.
I worry if, besides the fact that my immune-system is compromised, the radiation that I absorbed played a role in the development of the tumor that I have now, but I guess I will never find a 100% accurate answer to that question.
I will have to deal with these insecureties...

Statistics say that in my age group (50 and up) most new cases of cancer are breastcancers. Also with women who are NOT immunecompromised.

When I was in ICU and bleeding a lot in lungs they often had a daily x-ray to monitor the bleeding and they told me to try avoid any unnecessary ones but what is unnecessary one. The dentist will think they are necessary to monitor your dental health, the pulmonary doctor to check for pneumonia and so on. So what happens if you refuse an X-ray and then mis an important early diagnosis of a problem while it could be treated easier.

But X-rays are NOT only increased risk factor. I just found out the GERD I have had for years which was made worse by prednisone also increases my risk of esophageal cancer and maybe some others too. I will have a scope of both ends as soon as I can do safely (must be off all aspirin for one week first) to address these concerns brought on by my latest symptoms.

I know some cancer victims have refused the treatment cause they said the treatment drugs will just bring on another type of cancer in a few years or just ruin the time they have left so why bother to go through the brutal treatment. Some times this makes sense to me but generally I like to be hopeful for a good outcome.

[chrisTIn@]

...generally I like to be hopeful for a good outcome.
You are a very strong and inspiring person, drz. I Always like reading your comments and remarks.
And yes, you defenitely have a point about x-rays in general. What is the choise you have when your health is endangered?
I my case, I could have had an echografic investigation earlier, I think. The x-rays I had, didn't give too many essential information.
But afterwards, when you know the outcome, it's easy said, and we can't get back to yesterday.
GERD is a risk for sure, for stomach- and other cancers.
I really hope the investigation you're about to do when you're off the aspirine has a reassuring outcome.

[annekat]

I'm sorry you've received this distressing news, Christine, but hopeful that since they caught it early and the tumor is small, that it can be dealt with quickly and easily without a lot of harsh treatments or complications. All the best to you!