Friday, February 24, 2006

Overview of This Journey

This is an overview of Venita and Jim's journey through breast cancer diagnosis and treatment.

Updated May 15, 2007

After finding a large mass in her right breast in December 2005 and going through all the appropriate diagnostics, including a surgical biopsy of a 4cm mass (with only one clear margin), Venita was diagnosed in February 2006 with invasive lobular carcinoma. (“Invasive” cancers are ones that spread.) Invasive lobular carcinoma is a relatively rare breast cancer (about 10% of American women) and a cancer that due to its nature and the density of V's breasts does not present on known breast cancer diagnostic tools--mammography, ultrasound, or MRI. This type of breast cancer usually only is identified after it becomes a palpable mass, and by that time the cancer usually is a very large tumor and has advanced beyond the breast tissue.

After undergoing more diagnostics and consultations with most of the medical professionals who will be V's “cancer team” for more than 5 years, on March 15 she had a surgical biopsy on her left breast and on March 17 a mastectomy (removal) and the start of implant reconstruction on her right breast.

The pathology of the three sentinel lymph nodes taken from V's right armpit (axillary nodes) showed that only one had measurable cancer cells, and the amount of cancer there was very small. Between that cancerous node and the possibility of “false” findings of no cancer in the other 2 nodes, the chance that the cancer has gone further than those three nodes is, ummm, maybe around 20%.

The pathology on the left breast showed 3 different kinds of cancer, one a small tumor of the same invasive type that was in V's right breast and two other types of breast cancer that are “in situ” (or noninvasive) cancers (which in effect are pre-cancerous conditions). The biopsy removed the invasive cancer with “clear margins” but the in situ cancer was peppered throughout the sample, meaning it is likely “peppered” throughout the left breast. (Again, none of this showed on conventional diagnostic tests.) Therefore, V's left breast was removed and the expander implant process started on September 8, 2006, after V had finished and "recovered" from chemotherapy.

Venita was to take a 8 treatment course of chemotherapy, the "standard of care" given the pathology report for her Stage 3A cancer. Because of severe peripheral neuropathy in her hands and feet, the final chemo treatment of Taxol was withheld. Venita was on "dense dose" chemo, meaning an infusion every other week. For the first 4 treatments, Venita also gave herself a shot of Neulasta to build up white blood cells the day after chemo. She also got a blood test every infusion day to check her white blood cell count.

Venita had a compromised immune system after the first four chemo treatments, and was hospitalized for fever of unknown origin. She also was diagnosed with "a touch of pneumonia." Chemo was put on hold for three weeks.

Venita also endured a 7-week course of daily radiation on her right chest wall and axillary lymph nodes. No radiation was needed on the left side because the single sentinel lymph node taken was clear of cancer. The radiation left her severely burned and scared.

She also has started a five year regimen of hormone therapy. She also has had quite alot of physical therapy to try to regain her range of motion in her arms, and has recently started on PT to address the continuing hand and foot neuropathy.

Venita's breasts were to be replaced with implants, a procedure where the reconstructive surgeon puts in a temporary breast implant that is the expanded with saline injections over several months to stretch the skin and then replaced with “permanent” (useful life of ~10 years) silicone implants. She had the "exchange" surgery on February 6, 2007. The attempt to place a permanent implant into the right side failed because of the radiation damage and, she found out later, infection. She was not told until after the surgery that the chance of failure or "unacceptable" cosmetic results on radiated tissue was 90%. The left side is looking pretty good.

Venita now has to decide what to do once she has completely healed from all this "treatment." Options include a prosthetic breast for the right side; a removal of the left side implant so that she simply goes "flat"; and having a "flap" of skin taken from her back to replace the damaged skin in the front and try the whole implant business again.

When the implant replacement failed (topped by losing her favorite cat to cancer a few weeks later), Venita went onto a severe depression. She continues to try to seek help for her inability to function. She also applied in May 2007 for Social Security Disability Insurance. It is a long shot, and it might take up to 6 months to hear the outcome of the first application.

Throwing a wrench into this whole thing was Jim being diagnosed with end stage alcoholic liver failure in late August 2006. Venita was finished with chemo, anticipating her second mastectomy in 2 weeks, and facing the radiation.

Jim was hospitalized for two weeks and then discharged to a skilled nursing facility (SNF) because Venita was having surgery just a few days after his hospital discharge. Jim stayed at the SNF for about 2 weeks, until Jim and Venita insisted he be released. It was not a pleasant stay for him. He came to Venita's home on Medicare-financed home health care.

He was home for 2 weeks when he developed spontaneous bacterial peritonitis which spread infection to his kidneys, liver, and blood stream (sepsis). He was hospitalized in ICU for several days, was then sent to the medical floor, developed a severe drop in his platelet count and sent back to ICU for blood and platelet transfusions. He was there about a week. The DRs were ready to let him go, to discharge him to a hospice, but Jim rallied and was sent back to the medical floor. (All this time Venita is going through radiation.)

Jim and Venita decided that they wanted to try to rehab Jim, not just "let him die." They asked for a transfer to a specialty long-term acute care rehab hospital. Jim was there over a month, but got excellent care and was able to come home the day before Thanksgiving, again on home health care, although a different company.

After a couple of weeks, Jim experienced problems with low body temperature and low blood pressure because of his blood values, but refused to return to the hospital. He would have fainting spells or mini-seizures when he changed position, and had extreme mental confusion. His family DR agreed to try to treat him at home, and the withdrawal of diuretics started to stabilize his condition. During this time, we had to hire private-duty aides a few times a week to care for Jim at night so Venita could sleep.

The 2nd home health agency (which was as bad or worse than the first) was getting close to discharging Jim from its care because he was "stabilizing." We felt he wasn't stable enough, but were glad to rid ourselves of them. We had only stayed with them as long as we had because they had an excellent physical therapist. We interviewed several Hospices, which Jim qualified for because of his terminal diagnosis.

Amazingly, as soon as we signed up with a Hospice service, Jim started to improve by leaps and bounds. He was no longer incontinent, he could stand without fainting, he gradually moved from wheelchair to walker to a cane to no assistive device (inside the house). He can come up the stairs, make himself small meals and snacks, do his own laundry; it's a miracle.

Hospice has released Jim. It is rare that folks "graduate" from Hospice, but he did. We were so very pleased with the Hospice and now know where to turn should his condition deteriorate again. We are no longer fearful of the "concept" of Hospice. Turns out Venita's medical oncologist is the medical director of Jim's hospice.

Jim is selling his two-story condo and wants to buy a ranch house, either alone or with Venita. He got a driving evaluation and has been able to regain the independence of driving.

During this long journey, we also have had some other sorrows. We lost 2 of Venita's cats: Bailey in June 2006 and Maxwell in March 2007. Two of the sweetest boys.

1 comment:

{Steve Rapaport} said...

For those who may be arriving late to the story, Venita's husband Jim has been the focus of the blog for some time now since he suddenly fell ill and was hospitalized.

He was diagnosed (eventually, sort of) with end-stage liver failure, which is very hard on him and on Venita. Among other scary effects, the failing liver allows poisons to remain in the blood that attack Jim's brain, making him unable to care for himself.

Venita's time is now spent mostly looking after Jim, and it's very fortunate that she's made it through the two mastectomies, chemo, and radiation therapy, because she needs all her time for Jim now.