Once I finally got my diagnosis via biopsy, and while still going through the motions with Lahey, I reached out to Dana Farber Cancer Center to schedule an appointment for a second opinion.
I want to cover all my bases and compare all the options, especially considering that Dana Farber is one of the leading cancer centers and located in Boston.
I wonder, if they read the test the same way and would offer the same treatment plan as Lahey....
"The cancer is a 4 cm invasive ductal carcinoma. Ductal means it started in the lymph glands, invasive means it spread to the breast. The tumor in the lymph isn’t strictly measured, it’s 2mm in the biopsy, but that’s just the part that was in the biopsy. The cancer is triple negative, which means it doesn’t respond to 3 hormones, estrogen, progesterone and human epidermal growth factor (HER2). It should however respond to chemotherapy."
Surgery on the breast will probably be a lumpectomy, just the cancerous part of the breast, rather than mastectomy, complete removal, unless genetic testing reveals a hereditary tendency towards cancer. (still waiting on results) Lumpectomy would be about 2 weeks recovery, mastectomy would be 2-3 months recovery."
Well, there are three options:
One: 6 months of chemotherapy, every three weeks for 4 hours each and every week an additional hour of immune treatment. After half a year of chemotherapy, the surgery of hopefully reduced tumors and limited lymph nodes and another year of milder oral chemotherapy (depending on the overall outcome)
Two: much more extensive surgery now, with removal of several lymph nodes (up to 24) which might result in lymphoma, followed by chemotherapy for 1 year
Three: with no treatment projected death within six month to a year
It looks like we picked door number one for now.
It seems that according to the protocol there is a litany of standard tests that are done prior to finalizing the specific treatment from MRI, to bone scan to CT scan.
It turns out, I have to be the one calling to set up MRI and CT (originally I thought that the nurse would be scheduling them up, same as blood work or genetic test), but it wasn't explained up front. So I called back the hospital on Tuesday to figure out if there is anything else required from me and was asked, by the way, have you scheduled your scans?
An hour on the phone, if not more and I was still unable to schedule anything. Had to drop the call as Max was calling from school and then decided in frustration to think about it tomorrow.
That turned out a good thing. An hour later, probably because I dropped the call, a nurse called and finally got an MRI scheduled for Saturday via emergency entrance.
Now that I am on the inside of the system with the cancer diagnosis it is strange to see how the hospitals create these additional rules and requirements. The few, I think, unnecessary appointments that take up lot of wait time --- required meeting another nurse in order to just schedule a biopsy, or for genetics 101 long chromosome explanations instead of quick blood test; but no roadmap or guidelines regarding numerous scans that are important and not easily arranged, most require different infusions (iodine, radioactive solutions, etc) and have to be scheduled and managed by YOU...
So, I filled out a lengthy online form regarding family history and was looking forward to this appointment for 12/9 from 10 am -12 pm.
After briefly looking over my online survey, the nurse gave me a print out of gene combinations and proceeded with a general lesson about chromosomes and mutations, sort of genetics 101.
After about 10 minutes, I explained that I was knowledgeable enough about what is a chromosome, how many we have and that some might have mutations -- understood enough of the basics. Then she said:
Nurse: "So if the result shows any mutations impacting breast cancer, you need to understand that it is not YOUR FAULT."
Me: "Hmm, I don't think it is my fault."
Nurse: "If you feel sad and feel like crying, it is ok. We can offer additional counseling right now."
Me: "I am perfectly fine, don't feel the need to cry and I don't need any counseling at this point."
At 10:35 am I was walked down the hall to draw two vials of blood.
So, instead of drawing this blood a week ago in any lab, I had to wait for a week for a scheduled appointment to get a mini lecture on genetics, agree to do an expended genetic testing and now will have to wait several weeks for results.
Soups and salads, sacred food from a temple, boxes of persimmons and pomelos and pomegranates, rides to/from hospitals or dropping Max off here or there...
And I am still fully functioning, for now just spending endless hours in and out of the hospital with numerous tests and on the phone with insurance.
No outward visible signs of any trouble in paradise, but the circle of embrace really invaluable.
I now have an official diagnosis -- triple negative breast cancer that spreads faster than the other kinds. And Monday December 5 the flurry of activity finally picked up -- there are numerous tests that needed to be performed to figure out treatment options:
MRI,
CT scan,
bone scan,
numerous labs,
and even a port to implant under the skin
Finally, a bit more than a month since discovery, the rush is finally on.
Cancer. Breast cancer, triple negative. How do you tell people? Just come out and say it -- and then there is an awkward silence, or crying or hurried reassurances that "in this day and age they will figure it out".
I think so far that has been the hardest part -- whom to tell, how to tell, and how to handle their crying. Or their prying eyes that try to find the cancer now -- you look kind of pale... and I don't. Who would have thought that this would be something I would have to think about and figure out now...
With all the tests, hospital visits and insurance calls between the normal daily life, I have just been able to tell very few close friends and few family members. But then again, what do you say? Got cancer, but do know yet what to do with it, or how to treat it and it is a rare kind, fast growing... and, by the way, please don't panic.
So I waited to tell after mom's birthday and then told my daughter who is in college, though it is her exam week and she would be home at the end of December....
George felt it couldn't wait and everyone deals with this in their own way.
The next steps would be to do an MRI and a CT scan to see if the metastases have spread to any other part of the body. But, alas, it is Friday evening, so she plans to work with scheduling all of these tests sometime next week.
"Have a great weekend," to be brief and to the point.
Oh joy, what a delightful surprise to receive a cancer diagnosis at the end of Friday! It's the perfect way to end a long week, isn't it? You can just sleep it off over the weekend and wake up fresh as a daisy on Monday, ready to tackle the next step in your journey. Nothing like a little cancer to add some excitement to your life, am I right?
Good thing that I have a stable psyche and to some degree I was prepared, because of all of my self-diagnostics with Doctor Google.
And I am off to Doctor Google to figure out what is the "triple negative cancer". This is a less common, fast-growing type of cancer, with a limited number of treatment options that occurs in 12%-15% of the population, with high likelihood of reoccurring...
Now I will wait for the official explanation with the oncology team in a week, shouldn't just trust some Google search.
LEFT BREAST 1 OCLOCK : INVASIVE CARCINOMA
HISTOLOGIC TYPE: INVASIVE DUCTAL CARCINOMA
GRADE 3/3, AT LEAST 10.0 MM IN LENGTH, INVOLVING MULTIPLE CORES
Breast Biomarker Report for Invasive Carcinoma (ER/PR/Her2-neu):
Estrogen Receptor (ER) Status Results: Negative
Internal control cells Present and stain as expected
Progesterone Receptor (PgR) Status Results: Negative
HER2 (by immunohistochemistry) Results: Negative (Score 0)
Biopsy. Breast biopsy is a procedure in which a small sample of breast tissue is removed and examined for the presence of cancer or other abnormalities.
Numbing, long needle guided by ultrasound screen going in, the loud clicking sound when the tissues are cut (very Harry Potter Aragog clicking) -- 5 samples from the breast. I imagined myself on the forest floor of The Forbidden Forest looking for something...
A breast biopsy, you see, is like a treasure hunt where the chest is the chest and the treasure is, well, not treasure at all. Instead, it's a tiny little lump that could be causing quite a lot of trouble. But unlike a treasure hunt where the goal is to find riches, the goal of a breast biopsy is to find peace of mind and hopefully, a clean bill of health.So now wait and see.
Well, it is not pleasant, but the three medics that performed it in the basement of the clinic were very efficient, kind and considerate. They dutifully chatted away with me about kids, travels and shopping, while my left hand went numb from having to hold it above my head.
Instead of the scheduled two hours, they managed to get everything done in one.
After the ultrasound scan and the pictures on the screen of several noticeable black masses, especially in the lymph nodes, and while waiting for results, I did the next best thing -- doctor Google. 
Several hours later, I already self-diagnosed myself with breast cancer, but decided to wait for the official biopsy results and not to panic too early.
Biopsy results are not quick as they take multiple sample tissues and than the pathologist regrows the cells to figure out if the cells are cancerous, and, if yes, what type.
Finally, the day of the appointment -- familiar basement radiology department
The procedure itself is relatively painless. During the diagnostic I was told that there are two dark masses --- left breast (known) and lymph nodes (arm pit) and, as predicted, I would need a biopsy... (was telling them all along)
The famous health care protocol kicks in. I can't just schedule a biopsy, as now I have to have a separate appointment with breast specialist within the Lahey clinic, who would then schedule the actual biopsy. There is no other way according to Lahey Clinic. And, as it is an appointment, there is another week worth of waiting.
At least, here I got lucky -- there was a cancelation that same day 11/18 (4 hours later)
The appointment was a waste of time -- took the vitals, looked at the ultrasound results -- didn't say anything new -- half a day later, I finally got the biopsy scheduled to the next available on 11/29.
As per instructions, I signed up for the Lahey portal and now would get results notifications the same day they became available -- so wouldn't need to wait for the doctor to view them and then reach out to me several days later.
2 days later, 10/31 the results were in: inconclusive, require follow up diagnostic and ultrasound mammogram as we knew from the get go....
Spent several days writing and calling my primary care doctor to get that additional referral.
Now, in my head, it would make sense to just do a biopsy right-a-way, as the ultrasound is required in order to get the tissues anyway and the lump is there and the only way to figure out if it is benign or not is via biopsy.
But nothing is that easy or logical -- according to the protocol, I first need to get a regular ultrasound and only after that get another referral to be able to schedule a biopsy.
The first available regular ultrasound appointment was 11/18, because, it seems, there is a shortage of ultrasound technicians.
Thank God for friends!
Alya drove me to the Lahey Clinic in Burlington and sat with me in the waiting room to get my mammogram.
I mentioned the lump to the technician and she wanted to do a diagnostic mammogram, but couldn't do the same day, nor would it be covered by insurance, and again clinic required another doctor's order. So we proceeded with the regular one.
It was uncomfortable, but manageable, and then they said that results would be soon and I would need to come in for a follow up ultrasound one anyway.
