For six years i have had a kidney tumor that has not grown at all and stayed very small. For this year's abdominal MRI, the kidney tumor grew fast and my surgeon is very concerned about the sporadic growth of my kidney tumor. My surgeon will rescan my abdomen in December, and if there is alittle bit more growth, it's time for surgery. So i have been wondering what makes a tumor suddenly grow fast? What changed from my abdominal MRI in 2008 where i had excellent results to my abdominal MRI in 2009 where i am now facing kidney surgery? Well, i have two thoughts and would like opinions on them:
1. last year i went through a lot of stress: sold my house, rented an apartment while building a new house, planned a fundraiser for VHL, prepared for a ballroom showcase...all these things happened around the same time period. Is it possible that stress may have contributed to my kidney tumor growth?
2. Hormones: Last year i was dealing with acne and fibrocystic breast pain after going off the birthcontrol pill. I am now back on the birthcontrol pill, and all symtoms are gone..but it took me awhile to get back on the pill, so i was dealing with very painful sore breasts and acne for awhile. Can hormones and the pill be a connection? How much does NIH really know about stress and tumor growh, or hormone problems and tumor growth? What do they know (besides smoking) that can increase the size of a tumor? I have never smoked, i do cardio 5xs a week for the last 11 years, and i am a ballroom dancer. I eat a healthy, low-fat diet. I understand that no one can really tell me exactly why my my small kidney tumor which never grew for years suddenly took off in growth, but some thoughts or other people's experiences would be interesting to me:)
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When Tumors Grow
- By ballroomdancer
- Posted August 31, 2009 at 8:43 am · 14 replies
- In Finding emotional support
- Shared with the public
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Exercise Cancer Retinal detachment Surgery Miscarriage Stroke Pregnancy Skin cancer Thrombophlebitis Acne Menopause Pain Heart attack Astrocytoma Stress
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- By MaryP
- Posted September 1, 2009 at 1:05 pm
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Thank you for this discussion. This is a question we ALL wonder about. I share your concerns about stress and hormones and would like to add several of mine:
1. Does the recovery from surgery (increased blood flow for healing of tissues and revascularization of surgical sites) lead to increased tumor growth in other areas?
2. Does metabolism have an impact on tumor growth?
3. What about exercise? (I have found personally that I have less tumor growth at times when I am exercising regularly.)
In answer to your direct question, I was on the pill when I was diagnosed with VHL tumors. The hard thing is: Would they have grown had I not been on it? I did have surgeries following each one of my pregnancies. Was it the hormones? Increased blood volume? General stress on the body? I am equally curious about what factors encourage these tumors to grow.
You have asked some important questions, and I am looking forward to the replies. Thanks again for addressing this issue.
- By ballroomdancer
- Posted September 1, 2009 at 1:18 pm
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Mary P.
Thank you for the reply. It's good to know that the questions that go through my mind are also shared with others. Hopefully Joyce from VHLFA can make contact with NIH and share our concerns with the doctors and give us some of their feedback. Regarding hormones, i have thought about getting off the pill, but then i will have to deal with acne reoccurring and also fibrocystic breast pain. What's a girl suppose to do? :)
- By mkj
- Posted September 2, 2009 at 9:33 am
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Great thread! I too have speculated as to what causes the phases of rapid growth at certain times and the dormant periods at other times. It seems that in my son's case, more tumors show up and grow faster with every surgery he has. It makes MaryP's theory of increased capillary growth to promote healing appear to be very plausible.
We are quite certain that our son's case is a mosaic mutation. He has been tested twice and both tests were negative for VHL, but there are other deletions that can produce the very same conditions. We live next to some large power lines. As a youngster, he and his friends spent a lot of time playing under and near those high voltage lines. I thought I had read, many years ago, that electro-magnetic fields can cause changes on a cellular level. I have brought this up in a couple of conversations with the many doctors we have talked to over the years. They have always said that there is no definitive proof that power lines can cause most types of cancer. A geneticist at Mayo told us that his mutation would have occurred during the very first stages of cell division immediately following conception.
So, let me throw this out there. The safest, most accurate test that is available for detecting CNS tumors is an MRI. Could those life-saving tests also contribute to the problem? You have to have the tests to monitor tumor growth, but could they also be another growth factor?
- By ballroomdancer
- Posted September 2, 2009 at 9:45 am
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Great points Mkj! You said some very interesting things. For starters, i may be mosaic. My VHL test came back stating i did not have VHL, but a deletion never seen before that could be causing the VHL. No one else in my family has VHL, and my father does not have this deletion, and my mother died when i was 7, from an astrocytoma brain tumor, which is not VHL. So i have been confused for many years on how i ended up with a disease?!? I think doctors are leaning towards mosaic in my case. When you talked about power lines, i had a flashback. When i was a child, i remember playing one day in a bedroom & there were bobby pins all over the floor. I decided to take bobby pins and stick them inside electrical plugs..and what happend? I was shocked and burnt on my fingers. So, a small part of me always wondered if that could have changed or caused my deletion, which lead to a vhl diagnosis later in life. Don't you wish we could just look into a crystal ball sometimes to find out how VHL occurred, especially for those with VHL who did not get it from a parent. :))
- By pupa
- Posted September 3, 2009 at 8:36 am
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Dear Ballroom Dancer,
If only we had the answer to why and how tumors grow, My son had a spine surgey 3 years ago and before the surgery the drs told us of other tumors that are quiet and may stat that way for years or months?? I like to believe for years but 9 months later another spine surgery Thanh god successful, But hey maybe it is stress... But how do you tell a teenage boy that everything is ok when its not, and do you say "yea so what you have these little tumors but just forget about it and just study and dont think about it " Of course its stress. But last year my son was really trying hard to take this big exam for universdity. He lockes himself in the room studying studying also exercisicg with weights tgo release stress, When the examine was finished he wanted to go to his retina specalist because something just wasnt right . and he had lasar lasar, Two months later he needed a virtrectomy or he woulh have had 200/20 vision. His right eye he is blind, but he told me " ma do you think I could have caused the vessels in my eye to grow because after the exam I was so cramped that I shut my eyes with all my might and than I started to have visioln trouble again That is whyb I felt I wanted to go to the drs and sure enough they needed to treat me." So could my son have caused hisvision to become worse?
Good Luck
- By pupa
- Posted September 3, 2009 at 8:36 am
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Dear Ballroom Dancer,
If only we had the answer to why and how tumors grow, My son had a spine surgey 3 years ago and before the surgery the drs told us of other tumors that are quiet and may stat that way for years or months?? I like to believe for years but 9 months later another spine surgery Thanh god successful, But hey maybe it is stress... But how do you tell a teenage boy that everything is ok when its not, and do you say "yea so what you have these little tumors but just forget about it and just study and dont think about it " Of course its stress. But last year my son was really trying hard to take this big exam for universdity. He lockes himself in the room studying studying also exercisicg with weights tgo release stress, When the examine was finished he wanted to go to his retina specalist because something just wasnt right . and he had lasar lasar, Two months later he needed a virtrectomy or he woulh have had 200/20 vision. His right eye he is blind, but he told me " ma do you think I could have caused the vessels in my eye to grow because after the exam I was so cramped that I shut my eyes with all my might and than I started to have visioln trouble again That is whyb I felt I wanted to go to the drs and sure enough they needed to treat me." So could my son have caused hisvision to become worse?
Good Luck
- By ballroomdancer
- Posted September 3, 2009 at 9:37 am
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Dear pupa,
I am so sorry to hear about everything your son has had to go through. I am keeping my fingers crossed and hoping that our concerns about what role does stress, or hormones, play in tumor growth will be answered by some good doctors from NIH. :)
- By joyceg98
- Posted September 6, 2009 at 12:20 am
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Great questions, everybody! Keep those theories coming. One of the strengths of being together is that we can pile all our theories in one pile and see what commonalities come up.
Some of these we have already analyzed with the doctors over the past seventeen years, so I can provide a few answers, but not all.
CHANGING GENES. Ballroomdancer definitely did not cause her mutation by sticking bobby pins in the wall socket. There were some pretty awful consequences, and it's definitely a bad idea :-} but VHL is not one of the consequences.
The only way to get VHL is either to inherit the change, or the change occurs in the egg or sperm prior to conception, or the change occurs at or shortly after conception. The change is with you your entire life. It happened before you were born. There is nothing you could do during your lifetime to cause this change to occur in every cell of your body.
MAKING IT WORSE. Pupa, your son did not cause his blindness. Please help him not to blame himself -- blindness is already a heavy burden, and he doesn't need any guilt. If his retina were aleady beginning to detach, very heavy weight lifting might have sped up the process a bit, but it might not have had any effect either. The retinal detachment process must have already been under way. VHL tumors that are not controlled will "recruit fluid" to themselves, building a kind of blister under the retina that begins to push it out of place. That's why it's important to treat even small tumors of the retina as long as they are not near the optic nerve. We need to stop their activity. When they are active, the retina is more fragile.
HORMONES. We still do not have good answers here. NIH is not studying this question. We have gathered stories like these from women with VHL, but there has been no scientific study. According to the anecdotal evidence we have been able to gather, there does seem to be some increased activity during those times when hormonal activity is high (adolescence, pregnancy, menopause, male menopause (45-55)), That doesn't mean that children should not go through puberty, or that women should not go through menopause, it just means that we need to be more vigilant during these times so that if something does come up, we find it early and can make a sensible plan. But hormone shifts are a part of life.
It would be good if we had some advice about various kinds of pills and such. At the moment we do not have any such advice, and I do not know if any studies currently going on that would give us that advice. There are long-term studies of various pills that will begin to give us clues as those studies are published, but they are primarily focused on the effects of the pill on the growth of breast and uterine cancers. While that information will not be direct evidence for VHL, it will be somewhat helpful.
IMMUNE SYSTEM. We do know that the strength of the immune system plays a role in tumor growth. When our defenses are strong, we are generally able to keep the tumors stable. When the immune system is weakened, tumors are more likely to grow and more tumors may arise. You will see a lot in the press about strengthening the immune system -- blueberries, stress management, moderate exercise, eating fruits and vegetables. All of that applies.
AFTER SURGERY. And after surgery, be sure to rebuild your stamina and your immune system as rapidly as you can. When we're recuperating we tend to eat more jello and pudding -- comfort food -- rather than fruits and veggies. We tend to get less exercise. We may be managing more pain than usual. All of that stresses the body and the mind, and weakens our defenses. Get back in shape, and rebuild your defenses as soon as you can.
AND there are still many unknowns. We understand some of the mechanism of how tumors grow, but we don't have a good handle on WHY. We are learning more -- from the scientists and from each other -- about what we can do to modify the growth pattern and stay healthier.
Keep up the good work!
Best wishes,
Joyce
- By ballroomdancer
- Posted September 7, 2009 at 7:38 am
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joyceg98
Question~you said that VHL is before birth, but what about environmental factors. i have heard that NIH has taken an interest in studying environmental factors possibly contributing to VHL mutations.
Thanks.
- By ballroomdancer
- Posted September 8, 2009 at 9:26 am
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Some information i found about the birthcontrol pill:
The addition of hormones into the body will make certain tumors grow faster, thus anyone with a known or suspected cancer should not take the pill. It is important to note that the pill decreases by half the risk of cancer of the ovaries and the endometrium. The effects of the pill on skin cancer and cancer of the cervix are not clear.
Women who have had liver damage should not take the pill. The pill causes a small increase in rare tumors of the liver.
Risks of BCPs
Aside from a number of minor, but annoying, side effects, serious risks of BCPs are limited, for the most part, to cardiovascular problems, including stroke, heart attack, thrombophlebitis and thromboembolism.
These complications are very rare among women under age 35 who are non-smokers, and the added risk of BCPs is difficult to measure and probably insignificant.
For non-smokers over age 35, the increased risk of cardiovascular problems among BCP users is measurable, but extremely small and certainly less than the risk of pregnancy.
For smokers under age 35, the increased risk of cardiovascular problems among BCP users is measurable, but extremely small and certainly less than the risk of pregnancy.
For smokers over age 35, the increased risk of cardiovascular problems among BCP users is very significant, and so high as to make such use ill-advised in any but the most extraordinary circumstances.
There is also a very small, but measurable increase in the risk of liver tumors and cysts.
- By joyceg98
- Posted September 8, 2009 at 12:17 pm
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The alteration of the VHL gene that causes VHL disease occurs before birth -- in fact AT or within days after conception.
If so, how can environmental factors play a role? The environmental factors they are talking about are the ones that affect the health of the egg, the health of the sperm, and the healthiness of the environment in which conception occurs (the health of the mother).
The eggs are in fact formed when a girl child is in the womb. They are with you your whole life. They mature at different times, but the DNA is laid down during gestation. Meanwhile, they age as you do. This is why more genetic alterations tend to be found among women 30+ than younger: the eggs themselves are older, and have been subjected to more potential environmental damage.
Men make sperm all the time. However, they are created and stored near the surface of the body, and are subject to differences in temperature and environment and of course to the man's general level of health. Men who were exposed to a number of toxic substances have been shown more likely to have children with some defects (e.g. trichlorethylene and agent orange). Haylie Pomroy, in her interview with me on Powerful Patient, quoted a study that showed that in a study of miscarriages, men who were nutritionally deficient had four times as many miscarriages. Miscarriage due to the father?? Miscarriage is often one way that Mother Nature decides this conception is off on the wrong foot and we should start over. So it's not just about the Moms, it's also about the Dads.
http://www.powerfulpatient.org/archive/2009/week0931_immune.php
Then there is mosaicism, which we do not yet fully understand, where the egg and sperm come together normally, the VHL gene is OK at conception, and at some point in the next few days a "hit" occurs that causes the VHL gene to change in just one of the 8-32 cells of the blastomere that is going to grow into a baby. What is that "hit"? Some influence in the environment (in the womb) that caused the gene to change: nutrition or toxicity. It could be some toxic substance in the air or water that made the environment less friendly for the developing fetus.
So yes, there are environmental influences that could cause VHL, but only before conception, or in the first few days of conception, long before you were born. The second hit that launches the tumor is also in the environment, but after you are born, those environmental influences change one cell at a time, not every cell in your body.
At the point of conception you are only one cell, so changing that cell puts the change in every cell of your body. When you consist of eight cells, and one cell changes, that changes every cell in one or more organ systems.
I hope that helps. Let me know if something is unclear.
Joyce
- By mkj
- Posted September 9, 2009 at 8:26 am
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That was very well presented Joyce. I asked the geneticist at Mayo if our son had a mosaic mutation, would his tumors be limited to his CNS as they have been so far. She said that was a reasonable assumption but it was not necessarily going to be a certainty. My wife and I were both 35 years old when our son with VHL was born. Your commentary makes me wonder whether or not the age factor could have entered into his case or not. Throughout our son's ordeal, I have always felt a lot of guilt. I have wondered "why" and have blamed myself both on an environmental and spiritual level. It is difficult to accept that things "just happen". Too many of us look for a reason as to why things happen the way they do, and then we beat ourselves up thinking that we may have been the cause.
- By TinaDiane
- Posted September 9, 2009 at 10:08 am
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A piece of advice that helps me when I start to wonder "What if... and Why.....??", is the following:
"You can't live your life looking in the rear view mirror." Leave that for the researchers!
Look forward, live life, and change what we can, try not to focus on what we can't change (like our VHL DNA).
xoxo
Tina
- By joyceg98
- Posted September 13, 2009 at 8:32 pm
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We all have questions about why. Why does one sibling have a tough time with VHL, and another sibling doesn't? Same mother, same cooking pot, same house, same cleaning products. One kid liked bananas and the other one preferred oreos. Do oreos making VHL worse?? (I just made that up, there is NO EVIDENCE that anything like that is true.)
The point is that we don't know, and even if it proves to be something in that realm, we certainly did not know it at the time and did not do it on purpose or with any intent to do harm. It was innocent, it's in the past as Tina says, and we can't go back and change it. We just need to integrate it into our lives and move forward. And of course we will keep looking for the reasons in order perhaps to be able to save another family from this happening in future. But for us, for now, it's done. This is the way it is.
For me, all I can do is to try to have a better answer for my son before he has the next VHL issue come up.
Guilt doesn't help -- it only cripples you, and puts a burden on your child too. Turn that energy into positive action. Enjoy life, love your child, and do the best you can. That's all any of us can do.
Love to all,
Joyce
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