Year 2, Month 5 and 5 days: Storm clouds and rainbows

Year 2, Month 5 and 5 days: Storm clouds and rainbows

So, it is that time again.  Time for annual testing. My blood work always tells me I am healthy, my CT always points to the interesting lumps and bumps of life that I would never know about had I not required a CT in the first place and of course… the hands on exams.  Every girls least favorite.

This time we felt a lump.  I suppose it has been there since the last surgery.  So off to get an ultrasound I go.  Results state ” 1.4 x 2.7 x 0.4 cm Continue reading

Day 50: Post-op, pathology, staging, decisions and drains oh my!

Day 50: Post-op, pathology, staging, decisions and drains oh my!

WOW!  Where to start.  Today is a very mixed bag of good news and not so great news.  I am going to let the words flow through my fingers and try not to over think it.

Starting with some of the good news from the post-op appointment.  The drains are out and the surgical sites look FABULOUS.  The tissue is healthy and clear and it truly looks great.  Having the drains removed did smart a little bit, ok, right drain #2 smarted a lot… and I dropped the “F-bomb” again… but the doctor was very understanding.  Having the staples removed did not hurt at all.  I am still a day away from a shower though.

Pathology report was not what I was hoping for, Continue reading

Day 32: Bargaining and quality of life.

Day 32: Bargaining and quality of life.

I like data and I like research.  Now… with cancer you will find loads of conflicting research and data.  Which makes sense, every person and their cancer is unique.  But it struck me that in a way this is really looking at odds and estimated percentages.  Treatments are based average success rates and your life becomes measured in blocks of years.  In fact, survival rates for cancer are typically calculated in terms of how many people live at least five years after their diagnosis. Yes five years, for ILC is currently reported as 85% with a 30 year survival rate of 50%.

There is a lot of focus on living, extending years and extending life, but not a lot of talk about quality of life.  A topic I plan to force into conversation this coming week as I follow up with the oncologist (Monday) and surgeon… sometime during the week.

I’m not gonna lie… reading about chemotherapy makes you question the odds makers and do some research. One study I found said, “In the end, our study indicates that primary chemotherapy, with its toxic effects, may not be the best standard of care for women with invasive lobular carcinoma,” Cristofanilli says. “Additional investigation, including genomic and proteomic studies, are warranted to help clarify the unique biological features of this disease.”

For my fellow data nerds… you can lost for awhile in here: or here

So… this brings us to bargaining and the Kubler-Ross model which identifies the five stages of grief as denial, anger, bargaining, depression and acceptance.  Interestingly enough, I think that with cancer you can hit all of these in an hour… kind of like a carnival ride….

As I research and think through chemotherapy, it strikes me that I need to ask the question not just about quality of life but percentages and success rates when it comes to no treatment, surgery only, chemotherapy only, surgery and chemotherapy, naturopathy, etc.  In other words, I need to know all the options and in all honesty I am not yet convinced with the numbers when it comes to chemo.  During the web surfing and research I keep seeing a little survey of 128 US cancer doctors quoted found that if they contracted cancer, more than 80 percent would not have chemotherapy as the “risks and side effects far outweighed the likely benefits”.

I know this may be perceived as bargaining, I don’t know, I see it as my job to do my due diligence and ask about all options.

Something I know about myself… it is not about how long I can be here, it’s about what I can achieve while I am here.  Quality of life matters – and it will be the topic for next week as I talk with doctors.

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Day 19: Meet Infiltrating (or Invasive) Lobular Carcinoma (ILC).

Day 19: Infiltrating (or Invasive) Lobular Carcinoma (ILC). Today’s post is more informational. This is the shortest write-up I have found ILC. As I think about the pros and cons of unilateral vs. bilateral, there is a lot of information even in this short article that make me lean toward bilateral. Especially the part where a mammogram won’t always catch it. This is an interesting process as you think about “removing” a part of your body. Especially when you are thinking about possibly removing part of you by choice… which we really won’t know until MRI results come back.

I was talking with an amazing friend last night and finally just shrugged my shoulders and said, “Me over-thinking, ugh… this is just vanity.” My friend says, gently, “Are you sure you aren’t confusing vanity with identity.” WOW. You need friends like that. It was a hard thing to ask and they were very aware of the impact of the question. It is identity. I do need to recognize that. Now… for the informational part:

ILC starts in the milk-producing glands (lobules). Like IDC (ductal), it can spread (metastasize) to other parts of the body. About 1 in 10 invasive breast cancers is an ILC.

Signs and Symptoms: ILC does not always feel like a breast lump. ILC cells may leave your lobes through one opening, staying together in a line. They can proceed to infiltrate fatty tissue, creating a web-like mass. This web of cancer cells may feel like a thickened area of breast tissue, and at first may not cause concern or pain. Unfortunately, if left undetected, ILC can develop into a mass that is about 3/4 inch (2 centimeters) to about 2 inches (5 centimeters) or bigger in size, before causing more noticeable symptoms.

When to Seek Medical Help: If you have any of these symptoms, get them checked out by a health professional right away:
A thickened area within your breast
An area that feels “full” or swells (not due to lactation or hormonal cycle)
Breast skin changes such as dimpling, thickening, or different texture
Nipple drawing in (retracting)

Because ILC can easily hide within breast tissue, a mammogram won’t always catch it, particularly in the earliest stages. If it does show up on a mammogram, it will be unclear as to its actual nature. Your doctor may send you for a breast ultrasound, which is better at detecting ILC than a mammogram. To get the best overall image of the cancer, you may need a breast MRI, so your surgeon will be able to see the size and location of the mass. Finally, to get a clear diagnosis of ILC, a breast biopsy must be done, so that a sample of the tissue can be examined by a pathologist.

Stages of ILC: ILC can be diagnosed from stages 1 through 4. It is more likely than IDC to occur in both breasts -– about 20% of patients diagnosed with ILC will have bilateral breast cancer. A breast MRI will help reveal this, and treatment can be tailored to combat both cancerous masses at once.

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