My Mom had bc approximately 16 years ago, in her right breast, when she was 54. She had a lumpectomy and 6 weeks of radiation. She also had her lymph nodes under her right arm removed- they were not cancerous. (She had had a hysterectomy well prior to the discovery of the cancer - both ovaries were removed). She was on tamoxifen for five years. AND she beat it!
Now besides the cancer, my Mom has also been diagnosed with scleroderma - it is a rare auto-immune disease that attacks the skin and makes it hard and shiny. Once the doctors pronounced this approx. 2 years ago - no thought was given to any symptoms that arose that cancer may be back.
October 2005 - she has been diagnosed with bc again and it has spread, she was told it is stage 4. She is 69. The lump is again on the right side. The cancer has spread to two spots on her bones - the pelvis and her rib cage, her liver is clear. She has undergone chest xrays, a bone scan and an MRI. She is currently taking: Letrozole 2.5 mg - 1 per day; Clodronate 400 mg - 4 per day with plenty of water. (She is also taking Ramipril - 5 mg - 2 per day for her blood pressure.) She has an appointment at the beginning of February to address whether or not the treatment will be aggressive or give her 'quality of life'; by aggressive I mean chemo - surgery was also mentioned.
At the time of her diagnosis she was in pain around her rib cage and very short of breath - a large amount of fliud was removed from her lungs - I believe it was about 800 mil - not all of the fluid was removed, but she gained some relief from that. It was said that the fluid build-up was from the lining of her lungs NOT the lungs themselves, and the fluid was to be tested.
Currently my Mom is still in pain from the fluid build up - which seems to be only on her right side. I can feel the swelling on her back on the right side, and around her rib cage - she says it is painful when pressure is applied there. She takes Tylenol 3 for relief, she is very conscientious about taking the Tylenol only as necessary - but sometimes it is three a day and she is quite uncomfortable, even with the pain relief any exertion leaves her short of breath - although she bounces back very quickly. She has no overt pain, no coughing and no bringing up blood. She has gone vegan/organic as much as possible and drinks at least 16 or more oz of carrot juice a day. She is also taking Graviola.
1) Upon questioning whether or not the fluid removed was cancerous we were not given any clear answer other than the receptionist at the Dr.'s office saying that is not tested - Is that true? Would it be tested anyway? If it is NOT positive for cancer would there be any further follow-up? Should we be asking for them to test the fluid?
2) Why wasn't all the fluid removed at the same time?
3) Why does the fluid build up? There was NO mention of retention of fluids and one of the pills she takes requires lots of water to take it - is this causing further harm?
4) What can be done to not have the fluid build-up at all? - or is it because of the scleroderma that her body is not able to fight and get rid of the fluid?
I would greatly appreciate any thoughts or advice you may have - like anyone with cancer the uncertainty is the worst and she has good days and bad - we would also like some answers.
My mother has ovarian cancer and I am currently fighting breast cancer.
My mother had a lot of fluid retention and yes they can and should have tested the fluid for the cells that cancer gives off as waste. That is basically what the fluid is. The reason it builds up, from my understanding is that the cancer is not something that is supposed to be in the body. For this reason there is no where for the waste to go but to build up in the body. This also causes the discomfort, and I am not sure they can ever take it all out at once. There is no real set area that it all accumulates in.
The only way to not have the fluid build up is to not have the cancer.
As far as your doctor or the receptionist, the doctor or nurse should be the ones you are requiring answers from. In my opinion it is something they should be doing well. Answering your questions to where you are comfortable with the answers, if not you need to stress to them how important this is to you.
I keep telling my mother and sister, who has taken over helping my mom, that the doctors work for them. The doc is a great person but he is human too and sometimes they get desensitised to cancer patients needs because for them it is a daily thing, over and over again. I am not saying they are bad in any way just sometime we as patients need to remember that we are in the drivers seat with our own care, or our family members care.
I hope this helps a bit.
Anything else I can do just let me know. Good luck.....
Jodi Linn, 44
Diagnosed in May of 2005
Not Menopausal, but am now
Invasive ductal carcinoma
ER-/PR-/Her2- (triple negative)
14 of 20 nodes pos
Just finished dose dense AC/Taxol chemo
We wish MUCH positive energy to you and to your Mom - as I mentioned in my first post it is the uncertainty about things and having patience to fight this disease that is sometimes the hardest.
We thank you for your reply and input - AND I thank you for the reminder that the patient 'is in the driver's seat' - my Mom is very good about asking many questions, SHE is the one that kept going until she finally got some answers as to what she had and how to continue.
My Mom objects to taking the pain reliever for the pain as she is concerned about the effects of it on her kidneys and her liver. The latest doctor said that concern is immaterial as her 'quality of life' is more important. And we are going to pursue and answer about the fluid and get a definitive answer.
Thank you again for the reply it is much appreciated. We wish you and your Mom all the best too.
Thank you for your kind regards. I thank you for the advice and suggestions, I appreciate that. My Mom, like I mentioned has good days and bad. She is not bed ridden, she still drives, she just cannot do things that exert her strength too much. The patience you have to have to get on with things (sometimes as best you can) can be the hardest, waiting for results, trying to eat right and do the best things for yourself are a challenge too.
She has gone vegan and we include many of the spices you mentioned. In soup there is always plenty of garlic, ginger, onions along with the tumeric. There is a great cookbook that my sister got for my Mom called:
'Staying Alive! Cookbook for Cancer Free Living' by Sally Errey (ISBN 0-9732987-0-7 published by Bellismo Books in Vancouver, B.C. Canada. The person that wrote the cookbook is a breast cancer survivor herself and there are inspirational stories too. It also tells you what foods to look for, cook with and to avoid - there is also a handy grocery list that you can photocopy and take with you.
The vegan diet can feel limiting especially if you miss the things you normally ate but as I keep reminding my Mom it is a lifestyle change and NOT a diet. It is a tough thing to wrap your head around - I am more vegetarian as I still include a bit of dairy in my own choices!
Her breathing has not gotten worse as it was pretty much confirmed by the doctor yesterday that the fluid is most likely cancerous - the most important thing is to be as positive and forward thinking as you can. Basically F_ _ K CANCER - that is our new phrase and if that offends anyone I apologize for your tender ears but I DO NOT apologize for saying it!!
I wish you all the best Cindy - thank you again for the post.
I read your posting and felt like I was reliving the experiences I just went through with my mom. My mom has been fighting breast cancer for over 32 years. Radical mastectomy in '74 right breast and another one in '98 at the age of 66. Both times she went through radiation and chemo. December '04 she was complaining of back and leg pain - walking with a cain and eventually a walker. Doctors thought it was bad disk but after changing doctors discovered she had bone cancer (actually breast cancer of the bone). Now, as I have learned, this is very common. The good news is that bone cancer can be radiated. They found a tumor in her back and leg and several spots on the chest and even her skull. These can all be treated.
My observation is that after fighting breast cancer for years, the cancer starts to appear in different areas. You have to fight breast cancer like heart desease - you go after the condition that it's hitting. After radiation and Chemo again in Jan '05 the spots all went away. However, her lung - (actually the space between the lung and the pleural) started to fill up and needed to be drained. The pleural is the lining on the outside of the lung. My mom went from being drained one a month to every other day within a matter of 2 months. We thought for sure she was on her last leg; feared the worst and felt cancer was taking over. They tested the fluid and didn't find any evidence of cancer. However, the filling got worse and worse and she was being drained every other day. After asking a lot of questions and doing some research we saught the help of a respetory specialist recommended by her cancer doctor.
(Side note - One of the biggest issue with the drainage, other than the trouble and risk of having it done, is that they are draining all the good nutriants in the body which causes further complications and problems. )
But, the good news is that there are a few things they can do to actually stop the filling. There are basically two techniques both called Pleurodesis. Basically, as it was explained to me, the pleural and the lung are supposed to be stuck together like two wet pieces of glass (or like a coaster stuck to the bottom of a glass) - the two pieces have a natural suction. They can slide back and forth, but the bond between them is strong. In the lung, this bond, keeps the fluid from collecing between them. When this bond fails, fluid collects in this space and reduces the lung capacity making it hard to breath.
With my mom, there was likely some initial problem (some cancer) in the outside of the lung that caused the filling to first happen. Once it happened, the bond between the pleural and lung was released and allowed for fluid to collect. The radiation and chemo stopped the cancer but not the fluid problem.
In the two techniques the goal is to get the pleural and lung to rebond. With Pleurodesis, they drain the space between the lung and the Pleural for a couple of days in the hospital. They then inject a chemical (like an acid i'm told) into the drainage tube. They role your mom around on the bed to get the chemical to coat the lung, leave it in for about 20 minutes and then drain it back out through the tube. This technique causes the pleural to rebond with the lung. My mom first went through this technique. The problem, however, with this technique is that it is extrememly painful and the paitent is awake. Pain medication (morphine, etc) was administered but it caused an overdose unexpectiedly and she almost died. So, the doctor had to abandon the proceedure - he released the chemical within about 8 minutes and the bond didn't work.
After a couple of week, she went back in for the second technique. The second technique is one where they put the patient out under a general (no pain here) and then somehow they blow sterile talcom powder around the lung. Amazingly, this recreates the bond between the pleural and lung. The benefit is that it's not painful. The risk is the general vs local.
In my mom's case, this worked terrific. No more fluid. Her breathing has been weak but getting stronger every day as she does breathing excersizes.
From all the cancer and radiation, she just went through a hip replacement two months ago and is now getting stronger. She continues to take Xeloda - a chemo pill routine you take everyday for two weeks and one week off. And also other infusions on a regular basis. She has also has lymphodema in her arm for over 30 years from the first BC back in '73 - but that's another story.
Don't every give up. The body can bounce back. As long as the cancer stays away from major organs they seem to be able to treat it agressively and successfully.
The biggest recommendation is to make sure you are talking to the doctors and asking for clarity about what you don't understand and alternatives. The doctors do their best but the patient and family also need to do their research and ask the right questions.
Check out this link out, it might give you some more information.
Best of luck and I hope it helps.