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Senior Member
Join Date: May 2006
Posts: 52
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Yes...I strongly recommend participated in the Susan G. Komen
YES!!! If you are physically able.
I did it-3 years in a row, and I feel that it has contributed to my survival.
At the time of my b.c. dx, I made an immediate change in my lifestyle, hoping that whatever was going on that had allowed the cancer to proliferate, that if I made a change that it would disrupt that process. I made changes to my diet, began an exercise program, and did other things to try and 'heal' myself.
My initial dx, was stage II lobular. I opted for a bilateral mastectomy because of a bad family hx of b.c. and because lobular was the most likely kind to recur on the other side.
It turned out that the pathology after surgery showed, that in addition to lobular, I also had high grade dcis with extensive comedo necrosis, and a separate tumor in my nipple with dermal lymphatic invasion as well as Pagetian spread. The dermal lymphatic invasion meant that I also had IBC (Inflammatory b.c.). In addition the pathologist's worksheet also mention dc. Thus, U may have had 5 different types of aggressive b.c. including 2 very rare types. The 'rare' refers to the presentation of IBC in the nipple and the fact that I had pleomorphic invasive lobular, which supposedly has a relatively short relapse-free survival time.
After my dx, I joined a gym and started walking (about a third of a mile/day). Because of that change I was more aware of 'exercise' whenever I heard it connected to breast cancer. Thus, whenever I heard an advertisement for the Susan G. Komen, 60-mile 3-day, my ears perked up.
My thoughts were that there was no way I could ever do that. However, things changed about 2 years after my diagnosis.
I should preface this by saying that I was most likely stage IV at time of dx. Besides all the different types of bc, I had extensive lymphovascular invasion, extracapsular spread, elevated tumor markers, was Her2+, and ER+ In other words--all that was going on was 'bad' news.
One week after surgery I had a bone scan and CT scan. The CT scan showed enlarged retroperitoneal nodes, a 2.5 cm enlarged aortocaval node, and a 1.5 lesion on my liver.
Because of my family hx, I did all the 'right' stuff -- regular mammo's starting at age 40 and regular self-checks. I was quite naive at the time of my dx (which was probably good that I didn't realize how serious it all was or I might not have done all that I did). By the way, I had discovered a hardened area in my upper chest 9 mos. before my dx. I had showed my ob-gyn who flippantly dismissed my concerns and reminded me my most recent mammogram had been 'normal' (it most likely wasn't) and wrongly wrote in my chart that patient didn't like to do self-checks.
I had also been trying to find out why I had had extreme lower leg swelling for the previous 5 to 6 years and had been anemic.
Anyway, after my surgery, I did chemo (4 AC), rads (5 weeks w/out a boost), more chemo (2 Taxol and 2 Taxotere) and at time of first Taxol started weekly Herceptin for a year. I also did prescription 'alternatives' after I finished chemo. In addition, one week after last Herceptin I had a complete hysterectomy/oopherectomy.
Oh, and I forgot to mention I started Arimidex, one month after last Taxotere. I should also mention that I was menopausal at time of dx but put into menopause after treatment. I was dx'd just after my 50th b'day but had felt hardened area 3 mos. after I was 49. My family hx includes many relatives who died at young ages from b.c.--youngest being 28 as well as a male w/b.c. interestingly, I tested negative for the 'known' genes.
Also, 6 weeks after I started Arimidex, I developed 3 unexplained attacks of acute pancreatitis, each 13 days apart. One week after last attack, all blood tests were normal. 5 weeks later I suddenly became hypothyroid, had abnormal liver counts, and testosterone level was double normal. Another test showed it was 6 times normal 2 weeks after first test (which was probably a lab error since requisition mentioned a sperm count). However, that led me to get hysterectomy, which I am glad I did especially since at my pre-op appt., I had an abnormal pap smear for the very first time.
I also forgot to mention, I most likely had bone mets from early on--and am being treated as if I had such although never 'officially' dx'd even though I had some bone scans with 'unusual' hot spots. Also, I have had PET scans and MRI's with increased uptake in bones as well as in other areas (soft tissue). In addition I have had unusual vision problems and bouts of vertigo.
Okay--sorry for long intro to 60 mile. One Sunday, about 8 mos after my hysterestomy and 15 mos. after dx, I was feeling 'down.' I don't usually feel 'down,' but always did when one of my daughter's left to go back to college (out-of-state) after being home from a break. I wasn't 'depressed' just a bit 'down' and had a hard time being productive.
My husband suggested I go to the gym but I didn't even feel like doing that. Finally, I made myself go on the treadmill--something I only did at night while watching the news on TV. TV was something I rarely watched and never did so during the day. However, I also found exercising on the treadmill extremely boring, so I turned on the TV. One problem--because I don't watch TV that often I hadn't mastered the remote control for the cable we need to use in order to get reception. The TV was stuck on the biography channel. There was some biography on about some person I had never heard of and there was only 15 minutes left. I was about to shut off the TV when I heard the announcement that next up would be the Lance Armstrong story.
I didn't know that much about him at the time--only that he had 'beat' cancer and was a famous cyclist. I decided to watch and was so intrigued and motivated by his story that it brought to mind the '3 day,' which I still knew nothing about. What happened next, though, furthered my interest, and gave me the boost or 'kick in the rear' end that led me to participate.
--The following day, Monday, I went to work. At the time I only worked part time and usually worked Tues, Wed, and Thursday. However, if I were needed for a special meeting or needed to get something done for a Tuesday, I would switch days which is what happened that week. Also, if I were unable to leave before a certain time I would stay late to avoid traffic--which is what I did that day. As I was leaving, around 7 p.m., I passed the conference room. As I did so I heard the words, "Susan G. Komen," and immediately stopped. I had no idea what was going on in the room but as I mentioned the Lance Armstrong story further spurned my interest in finding out about the 60 mile walk.
Someone came out of the room and invited me in. I initially declined since I hadn't been invited and had no idea what was going on and didn't want to interrupt them. However, this gal urged me to join them and I figured I was causing more attention by not going in, so I followed her back in. It turned out that this gal was a recruiter for the Susan G. Komen walk, and her friend, had gotten special permission for her to do a presentation at the school where I worked. Since I don't usually I hadn't paid attention to the bulletin for what was going on Monday.
After the presentation, I decided to sign up for the walk. Now, mind you, at the time, I thought there was no way possible that I could do it. I figured that if I couldn't do it, the money I gave--used for personal expenses--would be a donation. I still couldn't believe I had signed up though. Then, when I got home I had another experience which reinforced my decision. I had been wondering about whatever happened to someone I had met online. She was a gal whom I hadn't heard from her in a couple of years. That night when I got home there was an email from her. She wanted to let me know that her daughter had graduated high school with honors. Her daughter had something going on medically that one of our children had at one time. Her daughter had been on many different medications but was still experiencing extreme difficulty which affected how she was doing in school. She had been on most every possible medication except the only one that my child had taken. Her mom was looking at private residential placements for her daughter at this time. I shared the info. about the medication that had worked so well for my child. She brought that info to her daughter's dr. He tried it and couldn't believe how well it worked for her. In fact, he changed many of his other patients to it. Not only did her daughter not have to go to residential placement, she was able to get out of the special school she had been in, return to a regular placement with a special class and then return to not only regular education, but was placed in high school honors classes.
How this relates to what led me to believe that I ,ade3 the 'right' decision was that, coincidentally, her last name was "Fate."
I forgot to mention that at this time I had also been experiencing extreme sciatic leg pain in addition to lower back pain for the past 3 months. The sciatic pain had come on suddenly at night. I am not unconvinced that what was going on was not something metastic in my spine. I was being followed by spine dr's at this time. Scan results did mention the possibility of something metastatic.
I was told that they could operate. I asked if they did that would they give me chemo afterwards or something I had just read about a "chemo wafer", prophylactically, to prevent metastases if there was something metastic that might be stirred up. The dr. said to talk to my oncologist. I did. He said that was why he did not recommend that I have surgery.
Anyway, I was in extreme pain at the time I signed up for the walk. About a month or so later, my husband and I went on vacation. I asked if we could do a walking vacation to help me prepare. We went to some of my favorite areas to walk in No. California--in the redwoods. It was beautiful but I still had my doubts.
A week or two later I decided to attend one of the training walks. My husband came with me. We left at 6:30 in the morning. I was in agony. I couldn't even walk a block without pain, how was I going to walk 7 miles that day, let alone 60. I was sure there was no way I could do it. Although I was a bit slower than the others, I did it. I had been ready to give up after half a mile, but continued--in pain.
I met the group later in the week and again walked around 5 or 6 miles--in pain, but it was not as intense. The next week I braved it and went with them--without my husband, and waked about the same. The next week, I did it again, and I was able to walk 13 miles. I could not believe I had done it. Something else happened, too. The next morning, the horrific swelling in my legs was gone.
Around this time I had also developed severe shoulder pain. I was bounced around to different dr's through my hmo. Initially I was told there was nothing there. My oncologist read the report--which said I had a bone spur--and ordered more films. The pain was so horrific I was unable to lift my arm to bring a glass to my mouth or even brush my teeth. This was on the non-malignant side. I later had a bone scan which the tech told me had an 'unusual' hot spot (as did my spine).
Around this time I also increased the Celebrex I had been taking to the maximum safe dosage as well as started taking a statin drug. This, along with the walking, reduced the pain--actually eliminated it. However, I also had a return of the vertigo I had been experiencing which came on suddenly about a year after my dx (although I had been having bizarre episodes of dizziness) soon after my dx--while on chemo. I had thought it was from the chemo but I think my onc. thought otherwise. The latest bouts of dizziness were dx'd as benign paroxysmal positional vertigo. That did go away with treatment. However, it returned again before the walk along with another weird bout which was different and last 6 hours. By this time, however, I was determined to do the walk. I did--the entire 60 miles except for about 1 or 2 miles when I stopped to visit with friends who came to cheer me on. My husband was also involved--he was on the medical transport crew.
I forgot to mention I had joined a team. I joined the same team and did the walk for the next two years. The last time I did it my husband switched to the medical crew where he learned to treat blisters. He is a dentist by trade who also has his doctorate in biological chemistry (and used to do cancer research). He figured with all the supplemental energy given to walkers, the chance of one of the two thousand participants needing to have a crow reseated or something else going on dental-related was quite likely. He was right :-)
Each time I walked, my leg swelling significantly improved. Interestingly, before doing the last time, I had developed severe back pain again. I was having a very difficult time walking. Yet, I did the walk again--just about the entire walk. I missed some of it the 2nd morning due to a technical difficult. I had done the walk in San Diego. The previous 2 years I had done the L.A. walk, which had been eliminated, along with the San Francisco walk. There was now only 1 in all of California. That resulted in a big increase in the number of participants in that walk. I had participated in the opening ceremonies. Normally, those who did so were the first to lead off. This year, however, we were amongst the last. Because of the numbers, there was a significant time difference between those who started out first and those who were last. By the time we got to the lunch area, there was only 15 minutes before that area would be closed. The walkers were required to get to camp before dark because of insurance reasons. That meant that prior stations were closed by a certain time. Because of that, I didn't have enough time to take care of my feet. In addition I had tried a new type of socks. That resulted in major blisters which I had to take care of the following morning. Because of the numbers of participants with similar problems, many were delayed in starting out which resulted in having to be bussed out to the first station rather than walking there.
Going back to the the last walk I did, I wound up being within the group of the last 3 people who made it to camp that day. I was in agony. I used a cane. But, I did it. When I felt I couldn't take another step, I made myself go on--step-by-step. After the 3 days, the horrific pain I had been experiencing in my back again went away--for 3 weeks. I had another CT scan about 2 months later that showed what appeared to be a healed pelvic fracture. Funny, none of the other scans had mentioned that. Around that time I was having a hard time walking. If we went shopping the first thing I would do would be get a shopping cart to take some of the stress off. My oncologist pointed out that I was using it as a walker. Interesting...
I then had a full Zometa infusion--the first time it was done 'right' and the pain went away. I also had a colonoscopy (there had been 2 possible lesions there). Anyway, since that time the pain has gone away.
Although I cannot say that the walk is the only thing that has helped me, I do believe that has contributed to my being here today--and allowing me to function as well as I do. Doing the walk, gave me confidence to try something new at work--a much more challenging position as well as return to work full time. Unfortunately, I didn't do the last walk this past year--due to some unforseen issues that shook my confidence and nearly destroyed me, but I have been slowly regaining that confidence and plan to do the walk again this year.
There is also alot of assistance provided to those who participate. There are medical stations set up along the way as well as at camp. There is transportation provided at any point along the walk if one is having a difficult time. In addition there are medical stations at camp. There are chiropractors as well as physical therapists and massage therapists along with medical doctors. The cost to participate is around $90.00. That covers food and most all other provisions--i.e. tent, showers, etc. Even the volunteers pay that amount, too. Thus, the monies raised go to where it is intended.
I want to add that I believe that the research done by the Susan G. Komen foundation is extremely important. Researchers have been given grants independent of pharmaceutical companies. I do, however, believe that research done by both independent and the pharmaceutical companies are important. It is also one of the best monitored of charities as far as the money being given where it is supposed to be going.
My husband and I plan to participate in this year's walk as well. I can't wait. It has been an unbelievable experience that I feel has contributed to my still being around. The odds of my being here this long were not that great.
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Cheryl
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