Where to do treatment?

Cindrelly · December 2018

First, some backstory: I'm 39, married for 20 years, and have 4 children, 1 each in elementary, middle, high school, and college. 6 months ago, we moved across the country for my husband's job.

2 months ago, I found a lump in my right breast. This week I finally received results: invasive ductal carcinoma, Stage 1 (that we know so far), Grade III, Estrogen+, Her2+.

After diagnosis and per my doctor's (surgeon who did the biopsy) ok, we went ahead with our previously planned trip back to our home city to spend the holidays with friends and family. As soon as we return in January, I meet with an oncologist to plan and begin treatment, starting with chemo.

Being back home, though, I'm realizing that maybe I should stay here for treatment. Here I have my parents, a large extended family, my husband's family, my college-age son, and a huge network of very close friends and supportive neighbors. In our new town, we only know one couple who have been close friends of my husband for years, a sister 2 hours away, and only a few acquaintances. Back home, I would have access to one of the most predominent cancer centers in the country and personally know many medical professionals. I've loved my doctor in our new town, but it's a small coastal community at least an hour from a bigger city and I'm unfamiliar with the medical system.

It would mean splitting up the family, though. I would keep the two youngest with me while my husband and high schooler go back to work and school across the country. This is especially hard to consider because we did something similar for 5 months last year while preparing to move. And it really sucked. It also might mean living in my parents' basement or our studio apartment (no separate bedrooms) with my girls while going through treatment because our old home is rented out as an Airbnb. This is also hard to consider because having just gone through a traumatic move I recognize that a stable and comfortable "home" is a crucial concept for me and my mental/emotional health. And I still feel a bit homeless.

I'm still kind of reeling in shock and don't really know much about cancer treatments and what it will all entail. So what I'm trying to figure out is, which is more important to have around me while going through treatment: a large supportive network or my husband? Temporary living conditions or my own home? A large big-city cancer treatment facility or a doctor who I've really connected with?

I know these are questions that ultimately only I can decide, but I'm curious if anyone else has been in a similar situation? Whether you were or not, what factors have contributed the most to the success of your treatment?

MelissaDallas · December 2018

What city is the new home closest to?

MDRR · December 2018

Hi

I was not in your situation, but would have wanted access to the best medical care with which I was completely comfortable and confident. But don't jump the gun -- you may be able to manage treatments without having to move. Maybe it would be just a few weeks or couple of months, or you could commute. Or you might be able to have your main procedures (surgery? depends on what they determine) and have follow up treatment locally, or some combination.

Georgia1 · December 2018

Hi there and I'm so sorry you are going through this. It sounds like you are planning for chemo and then surgery, right? If I was you I'd see a medical oncologist in both places since a second opinion is a good idea in any event. My lean would be to do chemo in the smaller town and keep your family together, because the treatments can be pretty stressful. But follow your gut.

Like others have said, when you get to surgery that's just a one-day event and a short recovery time, so you can do that in either place more easily. And again, I'd recommend seeing two surgeons to get two points of view. In other words, take it one step at a time.

All best wishes.

Ingerp · December 2018

I was happy to have my husband doing the grocery shopping and cooking for me through chemo but didn’t need anyone else. I took myself to all treatments and worked throughout. I’d try to minimize the disruption on my family (would the younger ones have to switch schools?). FWIW I’m getting tx through the smaller private hospital in town rather than the large University-affiliated hospital. It’s cozier, more personal, . . . Early stage BC is pretty formulaic in its treatment—medically there wouldn’t be any difference in your outcome regardless of where you go.

HikingLady · December 2018

I'm 61 and went through chemo this year, as well as bilateral mastectomy, and lumpectomy + radiation in 2003. It's all difficult, and I won't minimize the challenges, but it was manageable, each thing, each time.

Based on your description, I'd choose staying with husband and kids, and getting through it in the same place as your own nuclear family. You describe that as an important support, being together under one roof. Unless you dislike the oncologist there, or it seems inferior in quality. Maybe family from "back home" can fly to be with you when you especially need help?

I worked full time and also had two teenagers in 2003 when I had the lumpectomy + radiation, and I was 45 years old. I needed some help managing kids' carpooling, and people I barely knew stepped in and helped. Didn't need much help after the lumpectomy; fairly easy recovery. Tired during radiation. This time, I needed help for a week or so after the mastectomies--husband took time off from work to care for me. During chemo, there was one day each cycle of feeling pretty rotten, but that was only 1 day every 3 weeks. The other days, I was functional, but I got tired easily. I drove myself (10 minutes away) to every infusion, also to follow-up doctor appointments except the first 2 weeks after surgery. During chemo, I could cook, could do normal things, errands, etc, just slowly.

Keep researching exactly what the choices are, and what your resources are for help, as you're doing. Very smart, and I wish you well on figuring out the plan.

dtad · December 2018

Cindrelly...sorry you have to be here but welcome. IMO its very important to be treated at a major university teaching hospital rather than a small community hospital. They have state of the art equipment and the top docs. At the very least get a second opinion at one. Thats not to say you cannot get good care at a community hospital but I would want to make sure the protocol was the same. Good luck and keep us posted.

Sjacobs146 · December 2018

My question would be how much will your husband and children be able to help you? When I went through treatment, I had one child in HS and one in college. They were independent and didn't need much support from me. My husband did all of the cooking and he took me to my chemo treatments and to my surgery. He also had to drive me to two radiation treatments due to severe snow storms (he has 4 wheel drive). I had a lumpectomy, so recovery from that was very easy. I actually worked full time through treatment. I also had to go to the ER one night due to an infection. Luckily my high schooler was old enough to leave home alone and he could get himself to school on his own.

If your husband will be able to do all of the things for you, I'd say his support is most important. If his job will not allow him to be there when needed, then perhaps being with family would be better. As for size of hospital, I had your basic, run of the mill breast cancer. I was treated at a small hospital in spite of the fact that I live in Boston with access to the best cancer centers in the world. The smaller hospital was best for me. I got excellent care, and the hospital experience was less overwhelming than if I had been at Dana Farber. I know this because a friend of mine was being treated at Dana Farber for Stage IV BC at the same time. That said, in case of something unusual happening, I had the option to go to DF.

Would you mother be able to visit and help if needed? My mom came for my surgery.. Good luck with everything

Ingerp · December 2018

Another thing to consider with big vs. small. There happened to be an article in today’s local paper about my RO.

https://www.dailyprogress.com/news/local/distinguished-dozen-dr-sylvia-hendrix/article_60830e54-06ff-11e9-a77e-afbd73c01397.html

ElaineTherese · December 2018

Hi!

Since it looks like you have triple positive breast cancer (ER+/PR+/HER2+), your treatment could last 18 months or so. Based on your stats, an oncologist would probably recommend 12 weeks of Taxol + Herceptin, either before or after surgery. Then, there's about a year of Herceptin. Depending on what surgery you choose, and whether or not any nodes are involved, your doctors might recommend radiation from 4 - 6 weeks. That's not to scare you; it's just to point out that triple positive breast cancer is a marathon and not a sprint. It's an aggressive form of cancer that is best treated with targeted therapy (Herceptin). Would you be willing to be far away from your husband and you high schooler for a long period of time? Or, would you be looking to spend some time with your extended family and then transfer some of that care back to your new hometown?

I personally don't have any preference for major hospitals vs. community hospitals. My cancer was triple positive; my doctors adhered to the triple positive protocols. It wouldn't have mattered whether I went to the major cancer center in a city 30 minutes away or I stayed in town and got treatment here. I would have gotten the same deal. Good luck and ((hugs)).

WC3 · December 2018

I have the same type of cancer.

I had TCHP which is taxotere, carboplatin, herceptin and perjeta, which is one of the standard treatments for HER+ breast cancer.

Taxotere and carboplatin are the chemotherapies and herceptin and perjeta are the targeted therapies. I had 6 infusions at 3 to 4 week intervals and will continue with herceptin and perjeta for a year at 3 week intervals. I have no side effects from the herceptin and perjeta, other than a runny nose, but some people get diarrhea from the perjeta.

An alternative to taxotere is weekly taxol. I don't think there is a significant difference between the two except taxotere, on occasion, can cause permanent hair loss and taxol is sometimes easier to tolerate for those who have a sensitivity to the taxotere.

The C might also be different when taxol is used, though I am not sure if this is always the case.

For the chemotherapy, I needed a ride home from the infusions because they gave me IV benadryl as one of the premeds, which made me sleepy. Some people are also given ativan, though it's optional.

Fir TCHP, there is a risk of allergic reaction in the days immediately after the infusion, during which time my mother would stay with me, and my weakness would peak around day 5, during which time I was often alone but usually managed. I had to call my sister for help once when I got off of my side effect management schedule and needed her to pick up something at the pharmacy for me.

I had a bilateral mastectomy and needed help after surgery getting my shirts on for a few days, and reaching a few things I had forgotten to take down from the cupboard before hand.

I didn't do much cooking during chemotherapy and would have really liked a home chef. I made good use of hot food bars.

It helps to have people around but you don't need a village. I would talk with your husband and get his input and also see which treatment facility you like best.

oxygen18 · December 2018

Cinderelly,

What jumps at me is Stage 1, Grade 3, Her2+. Time is of the essence. I was Stage 2, and it had already reached the lymph nodes. Me, I d start the chemo wherever I can start earliest.

Meanwhile you can always arrange for a second opinion from another oncologist.

For surgey and radiation, if you want you could spend a few weeks in yr parents bsmt, less housework fo you.

I agree about need to check out the local hospital and to keep communication open with hubby.

Me I love community hospitals, and chose one over the fancy university hospitals because the facility was quite adequate, I felt treated like family, and my insured mega expenses helped cover the cost of indigent care for who knows how many people, so it was the silver lining for my BC. I never regretted my choice.

But if my case had been quite unusual, I'd have selected the university hospital.

Take care.

ShetlandPony · December 2018

This is not an easy decision, Cindrelly. One thing I have come to believe in the past seven years, based on my own and others' experiences, is that it does matter where you go for care. Yes, there is a standard of care everyone is supposed to follow, but with cancer diagnosis and treatment, there are so many judgements to make, so many details to know. I think the chance of getting excellent care increases if you can go to a major cancer center, or at least a university-based one, as you are more likely to encounter providers who are experienced, skillful, and specialized; and who communicate with each other well about your case. My opinion is that this may be particularly important if your case is anything less common (for example ILC) or if you are premenopausal instead of the typical older lady with breast cancer. How good is the radiologist who looks at and interprets your images? The pathologist who looks at the cells and whose interpretations influence treatment? The surgeons -- are they good at finding the sentinel node, do they know what the latest research says about nodes? (Hint: old-fashioned ones may unnecessarily take all a patient's nodes thereby increasing her risk of lymphedema.) Is the reconstruction surgeon skilled in all options (including flat and smooth if you want that), or will they only offer the surgery they prefer to do? What about the medical oncologist? Will she know what the latest research is saying and how to get your insurance to approve the drug with fewer side effects, or the best kind of scan, for you? Even the nurse who gives you a shot and the tech who draws your blood -- can they do it with little pain? Does this place have the best quality mammogram machine (3D), do they know the latest, best port to give you, and will it be the kind they can use for blood draws and scans as well? Is the staff trained to do this? Is there 24-hour help available if you have a problem, or will you end up in the local ER with people who have no clue? Are there psychologists, social workers, and support groups to help you? I could go on. The way I see it, you have this chance to do it the best way you can, and it is worth putting up with some things to ensure that you can give it your best shot, because hopefully cancer treatment will be temporary, and the rest of your life with your family is the rest of your life. Obviously your stress level, your mental and emotional health, and your family relationships are very important to consider. I'm just saying, realize that cancer care is complex, and think about your long-term goals as you weigh your options. Keep looking into this, asking questions and making visits, until you feel you have come up with the best plan for you and your family. But also don't delay too long.

hapa · December 2018

If it were me, I'd get a second opinion at the preeminent cancer center. If recommendations are the same, do your chemo locally. You will be getting infusions for a year or more. Consider getting surgery and possibly radiation at the big place. I have treated at two well known treatment centers and I've found that it is best to do your reasearch ahead of time and tell them which doctors you want, otherwise you'll just end up with whoever Is new or not busy.

Where to do treatment?

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