Jenn's ILC blog
Sorry it took so long to post again, I was waiting for some tests to get run to know what I should say. I don't like to worry people unnecessarily and sometimes it feels like a long wait. Luckily, lots of good news!
Done with first major round of surgery, chemo, and radiation so the biggest steps are done.
In June I finally did a minimally invasive vein procedure so my legs are feeling a bit better. I am starting to do some gentle exercising again.
My hair is growing in ever so slowly. My daughter says I look like Katy Perry with her short hairdo : )
It's been a weird month to say the least. Before chemotherapy I had a CT that showed a 2 cm lesion on my liver but Sutter said it might be a benign hemangioma, but couldn't rule out metastasis without further testing. I decided to wait until chemo and radiation, and then revisit the liver. After much discussion and many phone calls, I finally got an ultrasound of that same area and this time they found 2 lesions, one was 2.8 cm and one was 1.2 cm which made it look like my lesion had grown in the 3 months. Once again, no real clue so my local oncologist made a referral for an MRI and rushed it for me so I could get answers. Then, a "funny" thing happened: I started talking to people on a Facebook lobular cancer page and they were questioning why I was getting an MRI since they thought I wasn't eligible due to some metal in my body, I figured my doctor would have thought about it : ) I called down to double check with the imaging place and they said "oops, you can't have an MRI so now you need a few referral and new insurance approval" ugh!
As I was going to have to wait I decided to find the best machines in our area, so I turned to Stanford again for a referral and had one done within 2 days, their office staff knows me and is good about making calls to get things done! Interestingly, they only saw one lesion and they clearly classified it is a hemangioma (benign) and did not recommend further testing on that one, they did recommend to review it again in the coming years to compare in order to see about the 2nd lesion. To have the best data I need to have the test done with the same machine each time ideally so in a couple years I will get it redone. I can't tell you my relief to hear this news.
Currently am dealing with the effects of radiation: rashes, and blisters, etc. I am doing physical therapy to help with the range of motion, getting monthly implant injections, taking daily medicine for 10 years, shots to help deal with bone density loss and help the cancer not to spread into the bones and this week will meet an integrative doctor at Stanford to discuss vitamins and supplements.
Next up: trying to grow my hair into a non Katy Perry style and back to the regular family life until December and then two more surgeries if I can get them coordinated.
While all the chemo is finished the side effects are still very evident. The latest is that is looks and feels like I have pink eye and it won't seem to go away, a reaction to chemo. It is an exciting month with removing the port on May 19th and then starting radiation on May 22nd. I've been working with some fabulous physical therapists and lymphedema professionals that have been helping me to stretch my arm so I will be comfortable in my radiation sessions, it feels like a yoga pose.
I look a little like a baby at the moment, I have peach fuzz growing back on my head, but it is uneven, and bald and shiny where my hats rub.
Last round of chemo today, yeah! It has been a long haul for the whole family, but at least that phase is done. The nurses came out to celebrate with me yesterday, very touching. The chemo has put me into menopause and since my hormones will keep changing I need to take shots to suppress my ovaries production until we see if those numbers don't stay consistent or whether I need to get my ovaries and tubes removed surgically, might take a up to year to figure this part out.
Here is the recap and future plans!
So far have had my double mastectomy Dec 20, 2016, partial reconstruction with all my fills, all 4 rounds of chemo done so now ...
Next steps: remove my port May 19th, then start radiation May 22 to June 29, monthly ovary suppressing shots starting in May, then start 10 years of estrogen blocking medicine with likely side effects of bone loss and joint/bone pain in May/June, step 2 of reconstruction Dec 2017 and somewhere in there need a vein surgery and a possible ovary/tube removal. Let's just say we are looking forward to getting all the steps done and having a well deserved vacation : ) Thanks to all my friends and family for their continued support. Couldn't do it without you all : )
Round #2 of chemo officially starts tomorrow, hope I will be lucky for St. Patrick's Day! Bringing my friend Jessica and I hope to feel well enough play a few card games.
I tried getting a pixie haircut this week, but so much hair was falling out I ended up with a full shave, never seen it this short, except maybe as a baby! I've been accruing a little hat collection.
My dad came out to visit and help entertain and drive kiddos which is a full time job between volleyball, baseball, basketball, lacrosse and drama. While I have symptoms, it is not preventing me from going to work this last round, since I only work one day a week. For the next few days I plan on binge watching TV, sleeping and getting Jason to read to me.
Last week I went to a breast cancer support group called "Hooters" up in Placerville, such a lovely group of ladies, the largest I've seen, so fun and upbeat, a joy to be around. I was officially the youngest member that session, but figure there are others lurking out there, too. Not much else to report except that I am overwhelmed with love and support. Once I started wearing my chemo beanies, more people hold the door open even compared to when I was pregnant. I can't list all my wonderful support I've received. You know who you are and I constantly feel your love, support and chocolate chip cookies : )
Feb 26 - Chemo round One
On Friday 24th I went for my first, of four, rounds of "TC" chemo with lots of great support from my friends, in particular one who is also a nurse spent the day with me at the infusion center, taking care of every need, watching to make sure everything went smoothly and providing support and entertainment along the way. She had bags of snacks along with more food surprises from another friend, I didn’t know the chemo would make me "snacky." One of Nikki's friends mom's chauffeured her around between sports and the school dance Nikki was responsible for organizing, while Jason spent time with one of his friends. Both kids arrived back in time just to see me for bedtime. Friday was a decent night's sleep, better than expected. Nikki was up early Saturday for an all day long volleyball tournament, once again one of our friends drive and boy was I thankful since they had to leave at 7am! Roland returned from Asia in time to take Jason to basketball in the morning, and watch Nikki's volleyball in the afternoon. Saturday was a glorious day with blue skies so Jenn took Jason to the park and when we arrived back, we had received some tasty treats from edible arrangements. On Saturday afternoon I had my Neulasta shot, always the first day after each TC chemo round. Sunday is the beginning of the truly unpleasant symptoms, let's hope time flies and the treatment is doing its job. All the symptoms I had expected earlier on, all arrived today so hopefully they will go away quickly : ) Thank you for all your prayers, well wishes and please excuse my absentmindedness as I don’t personally respond to each of you. I have been feeling the love all around, and it lifts my spirits as our whole family goes through this experience.
Feb 11th - More results, and a decision
After a scheduling problem that caused a delay, Jenn has had a CT with contrast to check organs, and a bone scan to check inside her bones. Although she hasn't met with the doctors to get their take on the bone scan yet it appears to reveal nothing of concern. Her status thus presumably remains as "Stage 2B."
With respect to chemo, after lots of detailed reading of the research papers there was a niggling element to the reports which didn't seem entirely straightforward when lymph nodes are affected. We met with her oncologist in Roseville, who was recommending chemo which was consistent with the oncologist at Stanford too, so we asked a number of questions to understand why their advice seemed to be different from the conclusions in the research papers.
The Ki-67 result is apparently not entirely reliable and not necessarily repeatable, so the Luminal A status is not entirely certain, as all other types of breast cancer clearly benefit from chemo this throws some additional doubt into the equation. However, what really tipped the balance for Jenn and I was a better understanding of how given the fact that the tumor had crossed the ductal tissue to get to lymph it could have also propagated into her bloodstream, and only chemo could address this potential situation. Consequentially Jennifer has made the difficult decision to proceed with chemo. Surgery for a port is scheduled for valentines day, and chemo starts on the 24th.
Jan 26th - Results and Statistics:
The Oncotype type result came back, a score of 20. This is in the inconclusive range and doesn't really help with indicating whether chemo would be beneficial or not. Below 18 chemo is not recommended, above 30 it is strongly recommended, between 18-30 the results are inconclusive. The paperwork indicated a 12% (with chemo) versus 13% (without) risk of recurrence. Given the certainty of a miserable 3-4 months, and potentially life long complications due to chemo, is the 1% worth it?
Jenn has immersed herself into obtaining as much research data as possible, studying as many medical research papers, particularly those with statistical results involving >100 patients.
Why everyone believes in chemo: In the 1980's there were studies performed that conclusively proved chemo therapy was beneficial to breast cancer patients. There is a statistical measure called the Hazard Ratio (HR), this number indicates the probability of a particular "hazard" occurring versus a control set whose ratio is 1.0. The "hazard" of course is death or reoccurrence - either way something to try to avoid. So trying to get past the technical terms with an example: back in the 80's they found that chemo therapy had a hazard ratio of 0.56 versus the control set without chemo for breast cancer patients. This means the patients taking chemo were only 56% as likely as the non-chemo patients to suffer the hazard, clearly showing a huge benefit from chemo.
However, medicine has moved on since the 80's and there are a few different to categorize breast cancer: Luminal A, Luminal B, HER2+, Basal.
Jenn's test results:
The above data clearly puts Jenn into the definition of "Luminal A" non ductal although no doctor seems to want to discuss this as the luminal definition is relatively new.
The 2016 study from the Canadian Breast Cancer Foundation did one of the largest retroactive studies of 633 patients, 165 defined as Luminal A. Their results with respect to chemo therapy are profound:
The chart shows that for "generic" breast cancer, chemo therapy is highly beneficial, with a hazard ratio below 1, in fact 0.56 - almost halving the risk. However, if you pull out the Luminal A patients, chemo therapy has a HR of 1.06 - showing a 6% worse hazard with chemo versus non-chemo. Of the four types, Luminal A is the only category not to benefit from chemo.
Further more, the study perfectly matches Jenn, the patients in the study were of Jenn's age, with affected lymph nodes, and of similar tumor sizes, so holding strong correlation to her situation. The only gap with the conclusion is that this was performed retroactively using patient samples from the 1980's when the chemo therapy course was slightly different than what is used today. And thus is only able to conclude that the old chemo regimen was useless for Luminal A, but can't completely convey results for the new chemo therapy plans.
The chemo choices in the 80's were either cyclophosphamide-methotrexate-fluorouracil (CMF) or Cyclophosphamide (C). The option presented to Jenn is "TC" a mix of Taxotere (T) and Cyclophosphamide (C). The question is whether Taxotere is equally useless for Luminal A for the same reasons that Cyclophosphamide is (slow growth tumor, and chemo goes after fast growth cells). Or whether it is somehow different - this appears to be unknown.
Another paper, from Japan published in 2013:
"Effect of Chemotherapy for Luminal A Breast Cancer"
Result: There was no significant difference in the relapse-free survival of patients with tumor size greater than 2 cm and/or positive lymph node status who either received chemotherapy or not. However, the relapse event was earlier in patients with tumor size greater than 2 cm and positive lymph node status who did not receive chemotherapy than in those who received chemotherapy.
Their study used the following chemo: only FEC (fluorouracil, epirubicin, and cyclophosphamide) or FEC followed by docetaxel or paclitaxel.
Quote: Patients with node-positive luminal A breast cancer gain little benefit from taxane therapy administered.
The most recent paper, published this year: 2017 Penn State Paper "An Analysis of Oncotype DX Recurrence Scores and Clinicopathologic Characteristics in Invasive Lobular Breast Cancer. TBJ 12751."
Results: 5 Year Disease Free Survival Rate for Pure ILC: 89% (average of all treatment paths)
Discussion: It is unknown if patients with RS 18–30 benefit from chemotherapy. A retrospective analysis of a clinical trial of hormonal therapy versus chemo/hormonal therapy in lymph node-positive, HR+ patients showed no statistically significant overall benefit in adding adjuvant chemotherapy in patients with RS between 14 and 25. (Jenn's RS score is 20)
Unanimously the doctors, testing companies, and all research point to the benefits of the surgery she has had, the radiation therapy, and the hormone therapy. But there is weak support for the benefit of chemo therapy. Almost the best that can be said is "all of the chemo used prior to 2004 was worthless for Luminal A" and the chemo being offered now is very similar and there is no conclusive data that it is better for Luminal A patients.
One more test - finally, to check that it's not actually in her bones, i.e. stage IV, Jenn is getting some bone scans (MRI/CT) done. If this comes back positive, chemo is certain, but if this comes back clean it's a very difficult decision. The doctors generally favor chemo, but the latest research seems not to. It is not a clear-cut decision.
Jan 15th - Test Approval
We were excited that the Oncotype test could provide scientific, and statistical data to determine whether chemo therapy would be more beneficial, or more damaging. Alas, due to the test being relatively new, and without sufficiently robust large scale analysis it was not part of the default approved suite of tests that the insurance company would approve.
Jenn spent a week fighting insurance, getting her doctors to complete the "medically necessary" paperwork, finding research materials to send to the insurance people, and fending off the sales calls from the Oncotype testing company who had her tissue and wanted approval for the testing, and thus their fees.
A week later, Jan 11th, Jenn received approval for the test. This is important, if she doesn't need to do chemo that would remove a huge burden from her. In true American health industry fashion, upon granting approval to the Oncotype testing company and asking how long it would take for the results she was told they had already started the testing (before the approval). Obviously their opportunity cost for the testing is practically zero such that they test everyone's samples before getting approval but won't release the results until they receive payment approval.
So results are probably due around Jan 20th, the big question is whether they are something we can understand and thus conclude whether chemo is necessary, or whether Jenn must wait until her next Oncology appointment, sometime in February.
Thank you to everyone for the well wishes, food and support. Jenn's parents just left after visiting for a week, our house is as clean as it gets, for those who know Jenn's mom she loves clean! Jenn met her local oncologist last week at Sutter, Dr. Bobolis, she is incredible!
We are trying to keep life like as normal possible. Jason thoroughly enjoyed his weekly basketball game and Nikki just took a placement test for a possible high school, not sure which one she will go to yet; she has two months until her registration deadline.
Jan 4th Happy Belated New Year's
Jenn and I went to Stanford for a bunch of follow up appointments today. Good news was that the final 2 drains were removed so she will be much more comfortable. The breast surgeon and the plastic surgeon were pleased with her recovery and had some pathology to share. Her tumor is 80% estrogen positive and more than 95% progesterone positive and doesn't qualify for HER 2 positive. Final staging is considered 2B.
Typically with her 2 "dirty" nodes they would automatically recommend chemotherapy, then radiation, and then suppression of the ovaries with either monthly shots or a surgery to remove the ovaries and then final step is a daily pill to keep the hormones low for 5-10 years. Jenn happened to have a low ki67, proliferation rate, so they are going to send her sample to get an oncotype and the if the results come back low then she may not benefit much from chemo, let's hope for that!
Either way, lots of driving to Palo Alto these next few months and then will meet with the Sutter doctors soon and see what input they want to provide.
Thank you to everyone for helping out over the holidays: loved the emails, texts and fabulous food!
Hope 2017 bring health and happiness to everyone!
Dec 27 - Christmas came late this year
The 300 mile round trip to San Jose and back today revealed very promising news, frankly, every question Jenn had was met with the most positive response possible. Of the eight lymph nodes removed only two were cancerous. The others were all clean, showing a "clean margin". Nikki continues being a trooper, babysitting Jason while we are otherwise engaged with medical issues.
Of the tissue removed from the left, the main tumor that was removed had good margins all around, and she was clear in the right. Although concerned with how her recovery was going due to what she feared were odd symptoms, the doctor today was very positive about every aspect and reported that everything was proceeding suitably and she was healing well with no evidence of any problems.
The other benefit, two of the four drains were removed, so she only has half the medical clutter attached to her 24x7 for the next few days. Optimistically she may be able to have the other two drains removed on Friday.
The final pathology report including the tumor's response to various hormones and substances is due for the 4th so we will then know the next steps.
Dec 22 - Recovery at home
Jenn's wonderful friends have been visiting, bringing lots of yummy food - it feels like we have enough for at least a week, Jenn and the kids are only nibbling anyway. She seems to be doing very well after the operation - lots of pain, headaches, nausea, and difficult to move, but improving every day by a significant amount.
The kids are on day 4 of their TV/Electronics extravaganza they must feel like they hit the jackpot, they both have coughs and sniffles but that's much improved from earlier in the week. Today I bought all three of them face masks, two to keep self-contained and one with a virus barrier.
Dec 19-21 - Stanford
Originally the plan was for the four of us to go to Stanford to have her quick pre-op appointment and then visit a museum in the afternoon, but this was upset by both kids being sick, Jason up at 4am throwing up. Jenn left in the morning, on her own. I stayed home, hopeful the kids would be well enough to travel later in the day. That evening, the kids were looking a little better so we caught up with Jenn in the bay. However, to keep Jenn away from the germs we got an extra hotel room for the kids to cough, splutter, and hurl, all night to themselves.
In the morning I took Jenn to the hospital for her surgery, dropping her off at 10:30, she was not available to visit until 5pm which gave me most of the day to try to get lunch and dinner with the kids. Both Dr Wheeler and Dr Nazareli were kind enough to call me to provide me updates after each of their surgical procedures so we knew things were going well with Jenn. The kids were still far too sick to take to the hospital so they stayed in the hotel when I saw Jenn in the evening.
Jenn found 100% of the staff in the operating center to be really wonderful at Stanford, and all but one of the nurses in the recovery center to also be super caring and sensitive to her needs. One not so much, and Jenn asked for a different person to cover her when their shift came back on for the second day.
Especially due to the kids being so sick we asked if Jenn should stay longer in recovery at the hospital, however, the two sets of opinions seemed to receive were: "sick kids are an awful lot better than hospital super bugs, get her out ASAP for her own safety" and "someone else needs this bed tonight" so Jenn endured the 4 hour drive back home through the middle of traffic. Alas it was too late to leave for home before traffic and the opportunity to stay until after traffic didn't seem to exist.
Dec 15 2016 - Pre operation
For those of you who know our family, we love to travel. It looks like my "journey" this year is a year long visit with breast cancer, not my destination of choice!
I know I will be very busy during this time and am trying to figure out how to juggle it all, but I know that many of my loved ones will want updates and this is where I will post them. Be warned, since my children may view it, this is the view of cancer with rose-colored glasses. If you ever know anyone diagnosed with breast cancer and want a more candid/realistic perspective, email me after January 10th and I will be happy to share the more realistic version and provide lots of current research information and connections. I have been making lists and checking it twice for all the breast cancer services in my area so I will have a lot of info to share : )
A bit of background…
No family history of breast cancer and am 45 years old. Like most women I have no symptoms, I didn't feel anything unusual. I always follow through on my medical appointments; every year since age 40 I have been getting the regular mammograms. But this year at my annual exam, the PA felt my breast be a little "thicker" (no lump) and she encouraged me to get a mammogram ASAP. Sutter was incredibly accommodating, getting me an appointment that afternoon! The mammogram showed something abnormal, next was the ultrasound which confirmed something suspicious. By the time I was done everyone was gone for the day, but the tech there said I needed a biopsy ASAP and I told him I would make myself completely free the next day, anytime/any location and when I called at 8am that next day he had two different appointments saved for me. I have to say that when they suspect you have breast cancer, the whole medical appointments seems to go into hyper-drive!
I had the biopsy, and the following week, I found out I have Invasive Lobular Carcinoma (ILC), mine is very Estrogen positive and very Progesterone positive and HER2 negative, all very typical of invasive lobular. It is often not seen on regular mammograms and if you have dense breasts you can't easily see the difference between this type of cancer and your dense breast tissue until the cancer gets sufficiently large. Ugh! It also tends to grow slowly but undetected, it also is a type of cancer that for some reason tends to metastasize to the bones.
So, advice to ANYONE with dense breasts, get a 3D mammogram, please, please, please! Don't assume you will feel a lump or that a regular mammogram will work if you have dense breasts. No one ever mentioned this to me UNTIL I got breast cancer.
So, after that news, lots of researching and checked out several possible surgeons and medical centers. Am going to Stanford Dec 19th for several appointments, staying in the Bay Area. Dec 20th I'm having a bilateral mastectomy and some lymph nodes removed, they look suspicious too.
I hope to be home Dec 21st or 22nd if all goes according to plan.
I am having reconstruction done by Dr. Nazerali, also at Stanford. In January I will find out staging and if I need chemo, radiation and/or hormone therapy. The best news is that I don't have any genetic markers that are associated with breast cancer so that means Nikki doesn’t either!!!
As you can imagine I am going to be super crazy busy so please email/text me instead of calling for updates as I would love to hear from you. I will ask Roland or Nikki to update my medical info as we can and it will be posted here.
If you are inclined to help, feel free to sign up for mealtrain, https://mealtrain.com/49ze02 my dear friends Gade 916-221-0965 and Jessica 916-316-3281 set it up. While I won't need a lot of help in the beginning, it is likely I will later on as my treatment progresses, and this is great organizational tool.
Best wishes in the holiday season.
© Jennifer Wooster, 2016-2017. All rights reserved.
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