Microscopic report of the lymph node came back with a few clusters of malignant cells in the subscapular sinus. Right- nothing is ever in English. After lots of talk with doctors and chasing my tail to get my hands on the report, their recommendations remain the same; chemo followed by radiation.
After hours of research I have decided not to follow their recommendations. I found evidence that there is no significance in those microscopic cells they found. All of the research papers I found said I am still considered node negative and giving chemo based on those results alone is not justified. Some went so far as to say the stains used to identify the cells should not even be done when the node shows no sign of tumor. Risks from the treatment outweigh the potential for benefit.
I had another amalgam filling replaced less than a week after the lymph node surgery- not one of my better ideas. It put me in a deep depression for a few days where I mostly slept. Then 3 days later I woke up feeling fairly normal. Weird. I definitely need some help detoxing from the mercury after it is all removed. I go back the end of August to have 2 more removed. I will be done unless I decide to have a bridge replaced that apparently has some mercury under it (ch-ching$$$). I will make that decision later.
I feel really good to have finally made the decision not to have radiation and chemo. I continue to find research in support of that given the particular characteristics of my tumor. I have decided to seek out a holistic doctor who will guide me through my continuing path of detoxification and supplementation. I look forward to going to the Integrative Practice I found in Atlanta through a close friend of mine. I will see a M.D. who is also trained in more wholistic medicine. I have a consultation next Tuesday. Wish me luck!
I will also be proactive in watching for any more cancer to develop. I now have the tools to have my body scanned regularly in a safe way.
Thanks again to all my wonderful friends who have texted, prayed, sent cards, etc. I am truly blessed.
Monday, August 3, 2015
Wednesday, July 22, 2015
After surgery- again
I had the lymph node removed about 12 hours ago and have been asleep since right before that. They got an initial report of no cancer in the lymph node!!!!!!!!! Excellent news. They will now slice the node into many thin sections and look for any stray malignant cells. It may be early next week before I hear from that. I am so relieved!
Tuesday, July 21, 2015
Comments
Someone who read my blog told me they tried to comment and weren't successful at doing so. Being new to this I am slowly figuring out how things work. I think I have been successful in making it possible for anyone to comment now. Please feel free to do so if you would like to.
Middle of the night musings...
I got the lymph node biopsy scheduled for July 22nd (tomorrow). I saw the other doctors after my last post.
The radiation oncologist agreed with the oncologist that I should have chemo since my cancer was triple negative. I finally remembered where I had read that because my type of cancer was "apocrine" in nature, it was different than the regular triple negative type. It was an article I found months ago when I first began my research. It was on the website for Johns Hopkins- a very reputable source. It said apocrine cancers are always triple negative but are less likely to recur or metastasize. Because they are so rare (<2% of breast cancers) no studies to prove this have been done.
I dropped off a copy of the article at the office of the radiation oncologist and took it with me to see my gynecologist. The gynecologist has been my doctor for 20 years and is also my favorite obstetrician. We have been at many births together and have a good relationship. He will often come to the births of my doula clients even when he is not on call. He is the most supportive doctor of natural childbirth in Rome. This is probably because all of his children were born naturally. He was completely unaware of the information I shared with him about apocrine cancer and completely supportive of my decision to forego chemo if the lymph node biopsy is negative.
I feel fortunate to have the relationships I have with my personal doctors and to have their support as I face these many decisions.
My daughter and grandson are here with me and have been a nice distraction as I wait for this test. My sleep has been wonky since I have slept with my grandson the last 3 nights. He has not needed attention in the night but has been restless, and I naturally went back into "mother mode" where I sleep very lightly and wake up whenever he stirs. Yesterday I took a 2 1/2 hour nap with him which further messed me up- hence I am awake now at 3:45 in the morning. After my surgery I will probably sleep around the clock so maybe I can then get back to some normal schedule.
I have been obsessing over these decisions incessantly. I will be so happy when cancer treatment is not at the forefront of my mind. One day I feel confident that I need no further treatment, the next day I envision having chemo and radiation. I just can't wrap my mind around the latter plan. I have always thought chemo and radiation were not logical treatments. They both can cause cancer and both impair the body's immune system. It has never made sense to me to poison the body to treat disease. I am just not sure I can do that. I really feel that if my lymph node is negative there is very little chance the cancer left the breast before being removed. I also think I have many tools now to know if it comes back in either breast before it would even be detectable by mammogram.
I am so very fortunate to have a husband who is supportive of me and any decisions I make concerning my health. He has always respected my need to understand what is going on in my body and plan a course of action I feel good about. This would be so much harder without that support.
The radiation oncologist agreed with the oncologist that I should have chemo since my cancer was triple negative. I finally remembered where I had read that because my type of cancer was "apocrine" in nature, it was different than the regular triple negative type. It was an article I found months ago when I first began my research. It was on the website for Johns Hopkins- a very reputable source. It said apocrine cancers are always triple negative but are less likely to recur or metastasize. Because they are so rare (<2% of breast cancers) no studies to prove this have been done.
I dropped off a copy of the article at the office of the radiation oncologist and took it with me to see my gynecologist. The gynecologist has been my doctor for 20 years and is also my favorite obstetrician. We have been at many births together and have a good relationship. He will often come to the births of my doula clients even when he is not on call. He is the most supportive doctor of natural childbirth in Rome. This is probably because all of his children were born naturally. He was completely unaware of the information I shared with him about apocrine cancer and completely supportive of my decision to forego chemo if the lymph node biopsy is negative.
I feel fortunate to have the relationships I have with my personal doctors and to have their support as I face these many decisions.
My daughter and grandson are here with me and have been a nice distraction as I wait for this test. My sleep has been wonky since I have slept with my grandson the last 3 nights. He has not needed attention in the night but has been restless, and I naturally went back into "mother mode" where I sleep very lightly and wake up whenever he stirs. Yesterday I took a 2 1/2 hour nap with him which further messed me up- hence I am awake now at 3:45 in the morning. After my surgery I will probably sleep around the clock so maybe I can then get back to some normal schedule.
I have been obsessing over these decisions incessantly. I will be so happy when cancer treatment is not at the forefront of my mind. One day I feel confident that I need no further treatment, the next day I envision having chemo and radiation. I just can't wrap my mind around the latter plan. I have always thought chemo and radiation were not logical treatments. They both can cause cancer and both impair the body's immune system. It has never made sense to me to poison the body to treat disease. I am just not sure I can do that. I really feel that if my lymph node is negative there is very little chance the cancer left the breast before being removed. I also think I have many tools now to know if it comes back in either breast before it would even be detectable by mammogram.
I am so very fortunate to have a husband who is supportive of me and any decisions I make concerning my health. He has always respected my need to understand what is going on in my body and plan a course of action I feel good about. This would be so much harder without that support.
Friday, July 10, 2015
Saga continues
I met with an oncologist early this week. She outlined the chemotherapy regimen she recommends for me. It isn't enticing. If I had a different kind of cancer there would be newer "targeted" drugs they could give. Since I have this weird triple negative kind of cancer, all they can offer me is the older more toxic drugs they have given for decades. These are the ones that have the nasty side effects; hair loss, nausea, fatigue, etc... Since my appointment with her I have also found that the more toxic of the two also increases the likelihood I will develop a lethal type of leukemia within 10 years of taking the chemo. I could also have lasting side effects like foggy thinking (chemo brain), neuropathy, pain, skin problems, etc...
I found an article in a reputable oncology journal that says over treatment with chemo for early stage breast cancers likely causes more harm than good. Treating with chemo as an adjuvant therapy is controversial to say the least.
The oncologist said I needed to have the lymph node biopsy- she would recommend more treatments if the node was positive. If it is negative she would only want to give 4 treatments 3 weeks apart.
I decided to consult my general practitioner, a D.O. that I like and respect a lot. She also encouraged me to have the lymph node biopsy, but for a very different reason. If the lymph node is negative we agreed there is very little chance the cancer had left the breast. If there is little chance of that, then I think it is a case of overkill to have chemo- I feel the risks outweigh the likelihood of benefit.
The oncologist told me her recommendation is based on numerous studies that have shown the prognosis for women with my type of cancer is more favorable when chemo is given after surgery and before radiation. I wonder how they can know which of those women who survived with the chemo would not have survived without it. What if their cancer was completely eradicated with the surgery and they never really needed the treatment at all? Cause and effect seems impossible to predict to me. There are too many other factors that could affect the outcomes like; family history, diet and lifestyle, emotional support, etc...
I am going to see a radiation oncologist this week as well as my gynecologist, another doctor I like, respect, and have a long history with. I plan to gather as much information as I can, ask opinions from my personal doctors who know me, and hope the best course for me will be revealed.
I am also trying to reach my surgeon to get the lymph node biopsy scheduled and done. I hate to have another surgery but I feel like my decisions will be easier to make when I know that piece of information.
Thank you to all of you who have sent prayers and messages of support. It is wonderful to have caring family and friends.
Later,
S
I found an article in a reputable oncology journal that says over treatment with chemo for early stage breast cancers likely causes more harm than good. Treating with chemo as an adjuvant therapy is controversial to say the least.
The oncologist said I needed to have the lymph node biopsy- she would recommend more treatments if the node was positive. If it is negative she would only want to give 4 treatments 3 weeks apart.
I decided to consult my general practitioner, a D.O. that I like and respect a lot. She also encouraged me to have the lymph node biopsy, but for a very different reason. If the lymph node is negative we agreed there is very little chance the cancer had left the breast. If there is little chance of that, then I think it is a case of overkill to have chemo- I feel the risks outweigh the likelihood of benefit.
The oncologist told me her recommendation is based on numerous studies that have shown the prognosis for women with my type of cancer is more favorable when chemo is given after surgery and before radiation. I wonder how they can know which of those women who survived with the chemo would not have survived without it. What if their cancer was completely eradicated with the surgery and they never really needed the treatment at all? Cause and effect seems impossible to predict to me. There are too many other factors that could affect the outcomes like; family history, diet and lifestyle, emotional support, etc...
I am going to see a radiation oncologist this week as well as my gynecologist, another doctor I like, respect, and have a long history with. I plan to gather as much information as I can, ask opinions from my personal doctors who know me, and hope the best course for me will be revealed.
I am also trying to reach my surgeon to get the lymph node biopsy scheduled and done. I hate to have another surgery but I feel like my decisions will be easier to make when I know that piece of information.
Thank you to all of you who have sent prayers and messages of support. It is wonderful to have caring family and friends.
Later,
S
Monday, June 22, 2015
Still Not Over
The pathology report was not what we had hoped. It wasn't just DCIS, although there was some DCIS present- it was about 25% of the tumor. It is still triple negative which means they have no drug therapy to offer me. As a result of that the recommendation decided on by the "tumor board" is: take a lymph node just to be sure the cancer has not spread, do radiation therapy to make sure there isn't a stray cancer cell still in there, and do some form of chemotherapy. I certainly wasn't expecting that.
These are the standard recommendations for anyone with triple negative breast cancer and this is the recommendation they must give me to cover their a****.
They acknowledge that this is not a typical triple negative tumor. It is slow growing; in fact only a third of it seemed to be dividing, there were necrotic (dying) cells in it, all of the margins were clear, and there seemed to be no lymphatic or vascular involvement.
I agreed to meet with a radiologist and an oncologist to hear what they have to say, but I am going to wait until July when Billy can go with me. I seriously doubt I will have any of those treatments, but we will see after I meet with the experts.
God I am so ready for this to be over!
These are the standard recommendations for anyone with triple negative breast cancer and this is the recommendation they must give me to cover their a****.
They acknowledge that this is not a typical triple negative tumor. It is slow growing; in fact only a third of it seemed to be dividing, there were necrotic (dying) cells in it, all of the margins were clear, and there seemed to be no lymphatic or vascular involvement.
I agreed to meet with a radiologist and an oncologist to hear what they have to say, but I am going to wait until July when Billy can go with me. I seriously doubt I will have any of those treatments, but we will see after I meet with the experts.
God I am so ready for this to be over!
Friday, June 5, 2015
Post Surgery
The lumpectomy is over. I didn't realize how good it would feel to know the cancer is definitely gone. Apparently I was more stressed about it than I realized.
The surgical experience wasn't bad at all. Really. I talked with a good friend who is an anesthetist and got the skinny on what to request. I had the drug that killed Michael Jackson. It didn't require intubation, I didn't feel any nausea when I came out of it, and suffered no after effects from it that I can tell. I took a 3 hour nap in the afternoon but that could be from not sleeping much at all the night before. I have taken hydrocodone proactively so I haven't had a lot of pain. I showered today and saw the incision for the first time. It doesn't look too terribly bad- probably because I have had ice on it continuously since surgery. I bruised more after the biopsy and also had a large hematoma- probably because I didn't continuously ice after that procedure.
Now I am just waiting for the path report. The surgeon told Billy he is still hoping it is DCIS. I am hoping that as well. If it is then I am done with treatment. If it isn't there will be a decision to make about whether or not to have radiation therapy. I am leaning towards not, but I won't commit to any decision until I have the pathology report. They said that would be Monday, but it could happen today (Friday).
I am taking it easy- something I have no trouble doing. Aura was here until this morning and Billy and Hannah will be here until June 13th. I am happily being waited on. It feels like a vacation to have others prepare my food, wash the dishes, feed the animals, water the plants. It is nice to have willing caretakers. I am truly blessed.
The surgical experience wasn't bad at all. Really. I talked with a good friend who is an anesthetist and got the skinny on what to request. I had the drug that killed Michael Jackson. It didn't require intubation, I didn't feel any nausea when I came out of it, and suffered no after effects from it that I can tell. I took a 3 hour nap in the afternoon but that could be from not sleeping much at all the night before. I have taken hydrocodone proactively so I haven't had a lot of pain. I showered today and saw the incision for the first time. It doesn't look too terribly bad- probably because I have had ice on it continuously since surgery. I bruised more after the biopsy and also had a large hematoma- probably because I didn't continuously ice after that procedure.
Now I am just waiting for the path report. The surgeon told Billy he is still hoping it is DCIS. I am hoping that as well. If it is then I am done with treatment. If it isn't there will be a decision to make about whether or not to have radiation therapy. I am leaning towards not, but I won't commit to any decision until I have the pathology report. They said that would be Monday, but it could happen today (Friday).
I am taking it easy- something I have no trouble doing. Aura was here until this morning and Billy and Hannah will be here until June 13th. I am happily being waited on. It feels like a vacation to have others prepare my food, wash the dishes, feed the animals, water the plants. It is nice to have willing caretakers. I am truly blessed.
Subscribe to:
Posts (Atom)