Common Questions I Get Asked
A new diagnosis is a lot to absorb, here are some things I get asked often, and some I had myself...
I want to donate, any thoughts about charities or organizations?
I don't want to preference some over others , and want to do more research - there are so many admirable options and I am just afraid I will inadvertently leave one out. Also, having been impacted by multiple cancers I do see that some get more attention than others, and for obvious reasons, but I sometimes feel conflicted about that. I am offering suggestions on types of charities below, and including some that are more patient/family/caregiver-focused:
Types of charities that you can then research and select for yourself:
Closing the gaps and inequities in access to diagnosis, treatment, and supportive care
Holistic treatment approaches and free alternative resources for patients (massage, acupuncture, art therapy, music therapy, yoga, support groups) often as a donation based program through the hospital Cancer Center itself that can be directly donated to
Cancer Research charities
Housing for patients and families that travel for treatment, or families that need to temporarily relocate nearer to the hospital, and other family-based resources (cancer impacts everyone, not just the patient)
Information-sharing platforms I have found helpful:
Great Non-Profits (can be tailored by city for local charities)
Cancer.Net Financial Resources (family resources, medication, housing, travel assistance)
Did you get a second opinion?
In short, sometimes yes but often, no. This is really an individual decision. When I was first diagnosed with FAP (Familial Adenomatous Polyposis) was probably the only time I "shopped around". This was a diagnosis that would require lifetime care and maintenance so I wanted to have a Gastroenterologist that I trusted, and was comfortable with. I first went to DFCI, but was more comfortable with the second doctor I met with, Dr. Daniel Chung at MGH (like, my mom used to email him directly all the time, poor Dr. Chung haha). From there, I wanted my care team as consolidated and integrated as possible at one hospital for interdisciplinary "all hands on deck" care. I knew there were other implications (preventative procedures from my FAP looming so I just felt that a general hospital care team was better for me than a cancer-only institution. More recently, I have utilized resources and specialized procedures at other hospitals in the MGB network, so as new diagnoses pop up, that was another reason I felt I had enough access and options where I already am.
Update: With my most recent cancer, Pancreatic Neuroendocrine, my tumor ended up in a slightly different location than the imaging showed. It was ON my portal vein. My amazing surgeon, Dr. Motaz Qadan said if I had been at his previous hospital, Memorial Sloan Kettering, they would have deemed me inoperable right then, and closed me up. He brought a cardiothoracic surgeon into the room and they spent the additional careful time shaving my tumor off my portal vein. All this to say, if someone says your cancer is inoperable or untreatable - I definitely recommend getting that second opinion, and being proactive; research trials and alternative treatments available to you and then discuss with your doctor.
I also came to a crossroads with my PNET care at MGH. This cancer was originally classified as either Grade 1 or 2 (speed of growth / level of aggression) and only recently been classified and provided with treatment options for Grade 3 (more aggressive). I wanted to be somewhere with more experience in this newer patient group, where the oncologists were more engaged in the research and development of treatment options so I could have the most disease management options available to me. I met with doctors at the NIH National Cancer Institute, Beth Israel Deaconess Medical Center, and Dana Farber Cancer Institute. While the NIH has many active studies, they are not always for the benefit of the patient in the study, but future patients. Ultimately Dana Farber made me feel the most secure in my current treatment plan, the amount of "eyes on me", and treatment options for the future. I am someone who doesn't like to hurt other people's feelings and being at MGH for 20+ years, I was reluctant to switch, which sounds absurd. In hindsight, I probably should have switched as soon as I felt I wasn't being heard at MGH in regards to pain management and adequate screening (do the damn MRI). My advice: go where you are heard, and without delay.
Is there anything they don't tell you that I might expect or I might find surprising? Anything you wish they had told you?
They usually don't tell me prognosis or final treatment plan until after surgery. They give me the tentative base plan, but the plan may pivot based on what they find during surgery, or how I am responding to treatment.
They will generally tell me expected symptoms, but these are not a given and neither is the timing, nor the severity (ex. when I might lose my hair/eyelashes/eyebrows or if I will, they'd often suggest that I might). This is because every patient is different, and so are their symptoms.
Sometimes because holistic treatment is across multiple hospital departments, or not related to hospital care, it may be up to me to coordinate the use of free resources or alternative methods to symptom management available to me (ex. I scheduled free yoga, acupuncture, makeup classes for hair loss, massage, support groups at MGH Cancer Center; I used a LiveStrong grant for egg freezing prior to chemo). I make a point to ask about holistic resources, grant resources, drug trials, initiatives at partner hospitals, support groups etc. If I am doing something unrelated to hospital resources, such as cold plunges or lymphatic drainage massages, I am sure to clear these with my doctor first.
Sometimes they don't preemptively prescribe me medications for chemo/radiation symptom management, or they aren't strong enough. As I start to understand how my treatment is impacting me personally, I immediately tell my doctor if my symptoms are not managed. Zofran was not enough for me during my PNET radiation so I worked with my doctor to find stronger nausea options, supplemented with IV fluids on treatment days. Now I typically know what works for me and I ask for it right away. I ask my doctors for both a pain and nausea management plan. I ask for IV hydration when I know I am not getting enough fluids. If I feel like I need additional help or attention, I make an appointment with the Palliative Care team to come up with an additional plan.
Post-surgery symptoms can be a bit of a rude awakening. Doctor's don't often describe how tough recovery can be, or list all of the possible surgical complications to look out for (ex. abdominal abscesses, pulmonary embolisms - yup those were fun ones!) Some patients may prefer it this way. Personally, having been around the block here a few times, I ask them to "give it to me straight" and that usually gets me the uncensored information I want. Some days will be harder than others, and it really is often "two steps forward, one step back", so in reminding myself of this, I do not get discouraged by the bad days or the complications.
After my treatment is complete and I am in remission, follow-up scans can be daunting. Legally, my results are available to me on the patient portal as soon as they are available to the doctor. There are a lot of, what I like to call "buzz words" in the radiology results, whether that is simply because they can't rule something out, or they actually think it is something to diagnose further. I would ideally not read the results myself and wait until I meet with the doctors for their review but I have zero willpower. Whatever you do, do not Google! Its a blessing and a curse that I've gotten good at interpreting my radiology reports, and most of the time these "buzz words" are just that. They are included in an abundance of caution, but end up being nothing of consequence. On the off chance it is something of consequence, I remind myself that there is nothing I can do about it and to just wait until I see the doctor, putting it out of my mind until then the best I can. If the radiologist recommends further imaging, I insist upon scheduling that with my doctor. I lean a lot on my friends for distraction during this time, even if I haven't told them that.
Risk of recurrence is not always made clear, and much like prognoses, this is different for every patient. It is important to celebrate the wins and not get consumed by the what-ifs and whats-nexts, but I ask for some things to look out for and be mindful of. This, combined with having a clear follow-up scan plan puts my mind at ease. If there's anything to catch, it will be caught and early.
Insurance may be a roadblock to revolutionary treatment. Doctors are often well versed in structuring and submitting appeals on the patients behalf but the appeal approval is not a guarantee. What to do if your insurance denies your treatment or medication
What are some good questions to ask my doctor?
Quite frankly, it's been a long time since I was at the beginning with a new diagnosis. Now, I have fewer questions and a firm grasp on how this all works. I'll leave a few basics here tailored to surgery recovery and treatment symptom management, but I am including a link to a comprehensive checklist from the American Cancer Society of questions to ask your doctor when you are diagnosed
How many days can I expect to be in the hospital after surgery, and how long is the recovery?
What are the immediate symptoms from the surgery, and what are permanent symptoms or changes in my body I can expect from it?
What are the possible complications and when might those occur? If they could occur after I am discharged, what should I be looking out for and when do I need to call my doctor? (ex. I got abdominal abscesses and a pulmonary embolism after my distal pancreatectomy, and had to look out for particular symptoms for early intervention and knowing what to look out for really helped to get them sorted quickly)
What are some activities or foods I should avoid if any?
Is there anything I can do to aid in recovery (ex. getting up and walking around? This lowered my fever and got my digestive system restarted faster; Any particular stretches I should do?)
What holistic resources are available to me at the hospital? Any support groups you recommend?
Should I set up an appointment with Palliative Care or will you have a symptom/pain management plan?
If I am going to have chemotherapy, will I have a port? If not, any effects to my veins or downside there? Any advice for the port? (ex. I didn't have a port for my breast cancer chemo, and subsequent has been oral form. Without the port I have noticed how hardened it made my veins now, and blood draws and IVs are sometimes difficult to do now)
What are the chemotherapy/radiation symptoms and can I know when to expect some to develop? Do they build over time? (ex. I felt the effects of my chemo the most in days 7-10 after infusions)
Should I have a Visiting Nurse or Home Health Aid during recovery at home? (ex. I had a Visiting Nurse after major surgeries that would monitor my vitals and symptoms, help me with my post-surgical drains etc, this also helped me evaluate if a symptom was expected, manageable, or required readmittance to the hospital)
My loved one was just diagnosed, what can I say to them and how can I be supportive?
Over the years, the best thing my family and friends did for me was to distract me; sit with me and watch movies when I was curled up on the couch, and plan something fun when I was feeling up for it. I think the most successful sentiment I received was transparency and sincerity, and showing up for me like my health isn't scaring them off; try having cancer baggage in college, it scared a lot of people off. I always appreciated when they would talk to me, not about me, and wouldn't make assumptions or avoid asking something or saying something because it's difficult.
I don't know what to say
I am always here if you need me
I am thinking of you, praying for you, sending you positive vibes
How are you feeling today?
Need some company?
What trouble can we cause today? (personal favorite of course)
Send a thoughtful useful gift or care package (shout out to my amazing friends and families who have sent me comical onesies, snuggies, DVDs (yes before Netflix), a Roku/Amazon Fire Stick, etc.
Additional advice here from the American Cancer Society
What kind of surgical and/or treatment symptoms did you experience?
Thyroid Cancer and Treatment:
No cancer symptoms
Surgical symptoms included dry mouth (suck on lemon hard candies to help), neck weakness, hoarse voice for a few months (and if my thyroid medication was not enough to maintain my TSH & T4 levels)
Treatment symptoms included fatigue, weight fluctuations
Breast Cancer and Treatment:
Cancer symptoms included pain in the breast and a noticeable hard mass
Surgical symptoms included surgical site pain (you will have tubed drains that can sting a bit when you move, the bra's with the drain pockets in them are amazing), difficulty lifting my arms (button-down shirts and zipper hoodies are a must), fatigue and dizziness if I stood up too fast or took a shower that was too hot once cleared for them, numbness/tingling at the mastectomy site
I had my mastectomy and reconstruction in the same procedure, sometimes if you decide to have an implant in that breast, you may need to have a skin stretcher for a bit of time and second procedure to place the implant; I've always had some tig ole biddies so I had enough skin to work with (apologies I have frat boy humor - no offense to the frat boys I know and love)
Treatment symptoms from chemotherapy included fatigue, chills, fever, hair loss approximately week 3, dry skin, nausea; it felt like a tequila hangover for days 3-8 after each round of treatment and then I felt relatively well enough to maintain that YOLO attitude (you only live once)
Treatment symptoms from hormone therapy included weight gain, temporary menopause (I used a Livestrong grant to freeze eggs prior to chemotherapy and hormone therapy), decreased bone density - do not do any risky activities if your bone density scans show osteopenia or osteoporosis, I learned that lesson when I broke my leg skiing - whoopsies
Pancreatic Neuroendocrine Cancer and Treatment:
Cancer symptoms included chronic pancreatitis and pancreas pain in the upper abdomen area under the rib cage, and pulmonary embolism. My current symptoms are mostly pancreas/abdominal pain, lack of appetite and weight loss, shortness of breath
Surgical symptoms included the usual expected surgical site pain, slow bowels and difficulty engaging my abdominal muscles until they healed (like difficulty laying down and sitting up, so my parents would assist me with that), I got the side effect my doctor warned was a possibility - abscesses in the abdomen that needed to be drained. Similar to breast cancer surgery recovery, this required getting admitted for a few days. I was then discharged with drain tubes placed which I had for a week or so and monitored/emptied them at home with a visiting nurse
Treatment (radiation and oral chemotherapy) symptoms included abdominal pain, vomiting, nausea, radiation site skin pain (like a sunburn), fatigue
for products I used to help
with some of these symptoms
Any advice you would give friends or family of a patient? As a patient, what have you learned about friend and family dynamics?
I sometimes think it is harder for the family than the patient, I cannot imagine watching your loved one go through this, particularly as a parent or a healthy sibling. As the family member or friend, you may be avoiding tough questions or conversations not because you don't care, but actually it's the opposite. Often times, my sisters wouldn't ask me things, or share happy things about their lives during treatment because they were trying not to upset me or make me sad. Having open and honest conversations, and creating transparency in our family dynamic has become really important at this stage in life. Telling my sisters "yes, I have a moment of sadness when you share something joyful in your life that may no longer be an option for me, but it will never outweigh that joy I also feel for you" was my best way of articulating that. For them, openly acknowledging that something might be hard to hear made me feel more understood, supported, and heard. Self awareness and continual open dialogue in the family is something we have only just started to reinforce and it has made a huge difference in our relationships.
Navigating friendships and relationships as a young person going through cancer treatment can be especially hard. As friends or partners, I just wanted people in my life who wouldn't get going when the going gets tough, who wouldn't treat me any differently because of my cancer, and who wouldn't judge me. Prioritize empathy and honesty from an emotional standpoint. Physically, set expectations and boundaries, particularly to protect the patient from any risk factors (ex I was going through PNET treatment during peak Covid, so this was really important)
Understand that needs, attitudes, energy levels, levels of social engagement may change day to day. Be adaptable, compassionate, patient, and do your best to adjust to days where your loved one wants more or wants less from you. Take time for yourself to decompress when you need it so you can be the best support system while getting the support you need as well. Support groups for caregivers and family members are an amazing resource in navigating this.
Distraction is the name of the game for me. Whether it is sitting on the couch with me watching a movie, bringing over take-out, organizing a FaceTime, or planning an activity to get out of the house, that is probably the biggest way in which my friends show up for me. Sometimes its easy to overthink it, but really what I enjoy most is my friends just being my friends, not treating me any differently.
Any tips or tricks to make it easier physically or mentally that worked for you?
I worked with a therapist through the Cancer Center so they were equipped to listen and give advice related to diagnosis, treatment, body changes etc.
Acupuncture helped to relieve my nausea from chemo/radiation (after 3-4 sessions) and hot flashes from hormone therapy (after 8 sessions); it's definitely researching alternative therapies for symptom management (often provided for free through the Cancer Center)
I don't ask for prognosis, I choose not to latch on to a statistic that might be wrong and focus on living my life as "normally" as possible
When friends ask me how they can help, I say "distract me!". Doing fun things or nothing with friends is great, I'm just sure to listen to my body to decide level of activity.
I don't obsess over changing my diet to be 100% healthy and unprocessed, sometimes you just crave something fried; I do strive for a healthy balance with fewer processed foods. And I do try to keep a food journal after surgery or during treatment to figure out what I can and can't tolerate in addition to the doctor's suggestions
If I'm having a tough day, I cry in the shower with a good playlist; I use some aromatherapy eucalyptus and have a teak stool/seat in the shower to sit and steam (I hydrate first and listen to my body regarding heat and timing, but it's a great refresh mentally and physically)
Anything else you know now in hindsight that you want to share based on your experiences?
Have a healthcare proxy. This is someone you trust to help make care decisions, actively participate in appointments, have access to your medical information, etc. Particularly in tough appointments or when you're loopy loo inpatient, it is good to have that partner to take it all in and advocate for you.
Speaking of advocate - definitely self advocate. It took me a long time to learn to speak up or be a "squeaky wheel" if something wasn't right. No, you are not being a bitch for sticking up for yourself.
Getting cancer first at a young age, I was fully dependent on my parents in decision making and care management. As I got older, it was easy for that to evolve into codependency when really I was craving independence and self-empowerment. Working at that independence, setting boundaries; It is good to evaluate and evolve as your needs change (when you want family at appointments or not, when you want them to have access to your records or not, when you want to be reminded of upcoming appointments or not, etc.)
I signed up for the Critical Illness Insurance added benefit through my employer. This was only a small deduction from my paycheck, and offered some added help in alleviating the financial burdens of cancer care - every little bit helps.
Healing and recovery isn't always linear or predictable. Be kind to yourself and be patient; don't be in a rush to get discharged (readmits suck), and if you don't feel ready for discharge don't be afraid to vocalize that to your inpatient care team; as you transition home, some days you may have different or more intense symptoms than others. I would balance holistic symptom management with medication, and then I would call my doctor if the symptoms progressed or if it was urgent.
Who are your doctors? Do you like them?
I love them. Linking their Bios here for referrals, etc.:
Endocrinologists: Dr. Paul Copeland, MGH / Salem Hospital; Dr. Gil Daniels, MGH
Breast Oncologist: Dr. Beverly Moy, MGH
Gastroenterologist: Dr. Daniel Chung, MGH (specialty procedures by Dr. Hiroyuki Aihara, BWH
Gastroenterology Oncologist: Dr. Bruce Giantonio, MGH; Dr. Sarah Slater, DFCI
Radiation Oncologist: Dr. Theodore Hong, MGH
Pancreatic Surgeon: Dr. Motaz Qadan, MGH
Breast Oncology Surgeon: Dr. Barbara Smith, MGH
Breast Plastic Surgery/Reconstruction Surgeon: Dr. Amy Colwell, MGH
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