You can do it. Not saying it will be easy, but you just put your head down and GO. I promise that you will be amazed at the wonderful people you will meet along the way.
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I did not go to Moffitt for Breast Cancer but I was treated there for Stage IV Colon Cancer with metastasis to the liver, both lobes 3 tumors. I lived in NC when I had BC and went to a small cancer center. I transferred to another small cancer center in FL when we moved back here about half way through my treatment. When my oncologist discovered the colon cancer and that it was already Stage IV, she referred me to Moffitt. The surgeons at Moffitt are very good at what they do. I was told that there were not many in the U.S. who would have performed the surgery that I had done. We live about 2 hours from Moffitt so I do my chemo at my local cancer center where I already had a relationship.
Take into consideration the distance you have to travel. Yes, that is considering convenience, but I can assure you, it is a factor. After being released from the hospital, it involved traveling for 2 hours, going to the lab to get blood drawn, if a CT scan, going and having my port accessed, then going through the scan, then waiting for at least an hour and a half to see the doctor (the wait was so that the scan could be seen while I was seeing the doctor). We were usually there for 4 or 5 hours and then a 2 hour drive home. I had some major complications and it was grueling. I am still under the care of a surgeon but my oncologist found one closer to home. I simply could not continue traveling that distance. If you require a test where you need to fast, or do a cleanse, the travel can be a challenge. If you do require a hospital stay, it can be complicated for family to work out how to come and see you. There are motels that give you a break if you are a Moffitt patient, but that is not always an option for everyone. My husband is disabled and was only able to come see me a few times over my 12 day hospital stay. As I said, being close to your doctors and/or treatment center is an important factor and should be considered.
My inability to handle the traveling was my problem, certainly not Moffitt’s, however I would not go back there unless my oncologist really pushed for it. There were a number of things that I was not happy with, but they have a very good reputation and some excellent doctors.
As for breast cancer treatment, I found that the chemo was much harder than what I am doing now for colon cancer. I was sicker for longer and felt worse during chemo. I was Her2+ so I had to have Herceptin, which meant weekly infusions for 4 months + every 21 days of very heavy chemo, and then every 21 days for another 8 months of just Herceptin. It makes sense that I would feel worse during that process. You have to remember that everyone is different. Some breeze right through chemo and radiation. Even those who breeze through it experience the sensation of a roller coaster ride. It is very over whelming, particularly at first.
A suggestion that I always make to new cancer patients is to take control of what you can. Get yourself a notebook and get it organized. Set up dividers – you may not know what the categories are yet, but you can have it ready. You may want to do a section for each doctor you deal with. Have blank paper in each section for notes. Write down questions for the doctor(s) and leave room for notes of their answers. Have a sturdy page in front and, at each office you visit, get a business card. Staple it to that first page. You will have every doctor and/or office and their contact info right there. Get a calendar and put it in your notebook to keep track of your appointments (this will help with your taxes too). Get a hole puncher and put in every bill or breakdown that you get after each office visit. Ask for copies of all tests and put them in your notebook (whatever works for you – by doctor, or all test results in one section). Set up one section with some of those dividers with pockets. You will find lots of handouts, flyers, etc. that you might want to keep to think about later (stores that help with prosthesis or wigs; counseling services, possibly disks of tests, whatever). The more organized you can make it, the more you will feel like you have some control over what is happening. It is very hard to accept that these people you do not know are doing all of these things to you, and you do not seem to have much say about it. That is particularly true if you have been fairly healthy up until now. Getting organized is a way to manage some of what is happening, plus, it really is a huge help if you change doctors and when you figure out your expenses for taxes.
I have now gone almost 5 years without a recurrence of breast cancer. My colon cancer was a totally separate issue. Hang in there. You can do this!
First, knitted knockers are great! Second, I have a local oncologist but when I was diagnosed with a 2nd cancer Stage IV, they referred me to the closest research cancer center. They coordinate my care (sort of) and I receive chemo locally; am having major surgery at the Moffitt Cancer Center next week, which is about 1 1/2 to 2 hours away, depending on traffic. Although I certainly respect my local oncologist’s wishes that we coordinate with Moffitt and I absolutely feel that, in the case of my surgery, it is the best thing I could do, the distance is difficult. I personally would not want to go through hours of chemo and have to add 4 hours of travel time to it. Just something to think about; if you can find a GOOD local Cancer Center you will eliminate a lot of stress.
Just my opinion, of course. Hang in there!
When we moved from NC to FL, I looked for a local cancer (we moved to a small town) that had a relationship with the closest Cancer Research Center. My oncology nurse suggested that and it worked well. I did get recovering from BC but have since been diagnosed with a 2nd cancer that unfortunately was found to be Stage IV when I was diagnosed. Living within a couple of hours of the big cancer center has been very useful; I am having liver resection and colon surgery there next week. I have been able to do my chemo treatments at our local center and they coordinate with Moffitt Cancer Center.
Regarding the breast prosthesis; check into the fabric ones that you fill with the fiber to make them the right shape and size. Easy to wash out and very light weight. I have found that sports bras – most of which have inserts already built in – stay put the best. Danskin makes several that are comfortable. They are harder to get on and off, though. TLC makes a camisole that works well and keeps the fake breast in the right spot but it is a bit heavy for summer. I have not found a light weight camisole that can hold everything in place. There are several made specifically for adding a prosthesis and fasten in the front. They are usually wider and don’t ride up. I have not had good luck with the “regular” ones – I think because the bra moves around more and the openings do not stay closed well (unless it is the zipper kind) Sometimes you might need to use the shields for your natural breast if you still have one, depending on the sheerness of the fabric. If you want to duplicate the “real” look – complete with cleavage, check out the transvestite entertainers websites. There are a couple that sell lots of prostheses and they are considerably cheaper than the ones through the cancer sites, plus, according to a friend who purchased some, they are lighter weight and they look VERY realistic under low cut or sheer clothing. I think heaviness is most people’s main complaint about the ones that look “real”. If you had a double – consider just going flat. I know a number of people who do. If you select your tops with ruching (sp?) and extra fabric in the right spots, it works well. I still have one breast, so it is harder to make that choice.
Sue and @colleenyoung I did get good news today. My tumors are shrinking. They are having a “confab” and will include my oncologist out here, whom I have an appt. with on Monday. There is a possibility that they can go ahead with surgery; or they may try for a few more chemo treatments. I will find out on Monday. FYI – the oncologist at Moffitt says I should ignore what I am feeling on my right side; it may all be in my head because the tumors are considerably smaller than they were.
All I am focused on at this moment is that they have shrunk considerably – and that I am totally worn out.
Sue, I sure hope It gets easier. I know that I MUST start walking again immediately and am just so darn tired. I was so out of it yesterday that I left the shopping cart just sitting there behind the car! Very fortunate my husband was paying attention. Find some joy and try to focus on it for a bit. Every little bit helps.
I go back to Moffitt this Friday for contrast CT scan to see if the 4
treatments have had any affect. Unfortunately I had an allergic reaction –
tongue swelled, trouble speaking and swallowing. They got it under control
before it affected my breathing. I guess I will find out Friday how that
will affect what they suggest from here. They suspect it is the oxi. and
sometimes they discontinue, sometimes they run it over a longer day – 6
hours rather than 4 with more drugs to counter allergic reactions. It will
be hard to take that again!
I have not been feeling all that great. Have managed to keep up with
household chores but that is about it. I am not in pain, but I feel
something on the right side that just does not feel “right” so I have
doubts about whether the chemo is shrinking the tumors. One is pushing up
against the outside of my liver and it feel like it is doing it more so
than it did before. I do not know if my exhaustion is from chemo or from
liver issues. Have no appetite and have lost about 12 pounds so far. In all
honesty, I am not particularly optimistic but we will hope for some good
news on Friday.
Thank you for checking on me. That is very special since I am too far south
to come to your hospital.
Thanks so much for checking on me
Jun 7, 2016 · Recently diagnosed and wondering what to expect... in Breast Cancer
There are several different drugs available for nausea. Compazine gives me a headache, although it works well. Check into some of the natural controls; some may work for you. I learned to treat it like morning sickness; a little something in my tummy really helped. For me it was sesame stix; some do crackers – and ginger ale. Anything with ginger may help. They make a ginger candy that worked for me that I found at a health food store. My husband froze juices and then chipped up the ice and I was able t suck on that to avoid dehydration. Dehydration is a big problem during chemo – it was before and is now so I think it may be all of the chemo drugs, plus the process itself. One of the drugs I am n now causes extreme sensitivity to cold so I cannot do ice chips. I kind of stay on the edge of dehydration right now because of the back ground nausea. Just remember, hydrate, hydrate, hydrate – no matter what. If you get dehydrated it makes everything feel a whole lot worse – physically and mentally.
Once you start on the Herceptin/Perjetta only, you will probably feel a whole lot better, but that is a tough regime to start with. Communicate with your doctor and nurses and stay on top of everything. It is easy to think that feeling awful is obviously “normal” and just not say anything. For instance, you may be given steroid pills to take a few days before chemo and they may bother your stomach and esophagus. I was not forceful enough about how much they hurt and ended up with some damage to my esophagus. They were able to lower the dosage (better to be a bit more nauseous) which helped. Fortunately, this time I do not take oral steroids although I do get them be infusion on the day of chemo. A difficult part about this is doing a 48 hour pump which has to be carried in a fanny pack. It is supposed to be very effective though, so I am adjusting to it. Getting a stage IV diagnosis is tough and accepting the very real probability that one won’t still be around in 5 years is tricky while still remaining positive. So far the emotional/mental factor has been the more difficult; I am fortunate that I do not have many physical complaints at this point.
Good luck! Keep that good attitude.
Jun 6, 2016 · Recently diagnosed and wondering what to expect... in Breast Cancer
Welcome and so sorry you have reason to be here. It does make a huge difference which treatment program you are on. I was not triple positive, I was Er/PR- HER2+ ; I was on carboplatin, taxotere and Herceptin – the TC every 21 days for 4 months; the Herceptin every week for 4 months then every 21 days for 8 months.
If they have a chemo class, be sure to go. It will be a big help. The nausea meds they have now are pretty good, just stay ahead of it. Many people kind of breeze thru it with no major issues; others have a very hard time. From what I understand and have experienced, breast cancer chemo is one of the harder ones. I am currently going thru chemo for Stage IV colon cancer with mets to my liver. It is physically easier although more drugs and more often. Breast Cancer.org has a good site and can answer a lot of questions. There are also some great groups on Facebook.
Feel free to ask anything; I can tell you what MY experience was, which may or may not relate to what you will deal with. You will get used to the phrase “everyone is different” – I have and still do hear it a lot