Trying to stay patient!

Journey · 03-22-2010, 09:59 AM

Had a lumpectomy in March. Was wondering if anyone could tell me when the port is usually removed, IE: Before rad treatment? I will post my info shortly but in a nut shell. 1.9cm IDCIS, Stage 1A, Grade III Her2 2+ PR-, ER- taken immediately off HRT. I see my Medical Oncologist to determine chemo regiment and I do know that I do prefer a port. I know he will answer my questions, just impatient to get on with all of this. This site is great!

Jackie07 · 03-22-2010, 01:15 PM

The port is usually removed a year after all the treatment is completed. It needs to be 'flushed' every six weeks.

I have kept my port after the treatment because I've got too many scar tissues in too many of my veins. After one technician 'poked' my fingertips to 'squeeze' blood drops out, I decided to keep the port. [My oncologist was bugging me about it, so I told the technician not to use the port... then I showed the doctor my 'gauzed' fingertips...]

It does not bother me at all. I usually am not aware of its existence. There are several members who changed their mind and got their ports installed in the mid of their chemo. I'm actually surprised at the fact that so many of our new members did not get the port installed during the initial surgery.

Journey · 03-22-2010, 03:23 PM

Thank you for that information. My surgeon will put the port in prior to me starting chemo. I am surprised that they do not give you that option prior to surgery as they seem to already have a good diagnosis at time of biopsy prior to surgery. Did not even know to ask that question at the time, but surgeon says it is a quick procedure and he is a great surgeon. How long do they typically wait after putting in the port to start chemo??? Does anyone know. And do you have to ask for the numbing agent or is that a given for everyone going through chemo? When you say a year after chemo does that mean also after the Herceptin if given and that they flush it for a year??? I'm not sure I understand.

adelay · 03-22-2010, 04:09 PM

Hi, I also have a port that was put in about two weeks after my initial surgery. It was a very easy procedure and I'm so glad I did it because it has made getting chemo and herceptin so much easier. I started chemo about 3 weeks after I had it put it but I'm not sure if there has to be a wait or not. My nurses gave me the numbing spray each time, I never had to ask for it. I'm still on herceptin until October but the way I understand it, they would remove the port a year from then. Good Luck and stay positive, I've finished AC and T and now I'm almost done with rads....yeah...you can do this!

Journey · 03-22-2010, 05:07 PM

This sight is truly awesome. It sounds like keeping the port in a year after all meds is a precautionary measure as that does make sense. My other concerns are 1. getting use to the port 2. Doing activities like golfing 3. What if I accidentally cut myself or get a bug bite etc. 4. Keeping enough sun screen on. 5. Having low WBC or RBC. It appears in all that I have read that the WBC is the biggie here. Do dieticians get involved to help plan the right foods in preparation of or during chemo, and how often do they usually give booster shots for the white and or red blood cells?

caya · 03-22-2010, 05:14 PM

I had my port out about 4 months after I had finished Herceptin. Originally my onc. had told me I would have to wait the year, but on one of my follow up visits he said I could have it taken out.

all the best
caya

Jackie07 · 03-22-2010, 05:58 PM

'Protect your arm at all cost!' or risk having to wear compression sleeve/glove like me (and others)... But playing golf will be a good exercise. Just be sure to cover yourself well. The beginning and the end of each of the 3 week cycle should be pretty safe.

Booster shots are given whenever the blood test shows low counts. Be prepared to get blood drown often. I had been told to drink 'Ensure' or 'Carnation' to beef myself up.

adelay · 03-22-2010, 06:27 PM

Hey there~ all your questions were my concern too. Let me assure you that my imagination was much worse than anything that has actually happened.
1) I don't even think about the port anymore. It did bother me at first just because it wasn't suppose to be there and it just felt a little weird sometimes if I would brush against it with my hand or sometimes when I would flip over at night. Now it is just a part of me and I don't give it a second thought.
2)Are you worried about golfing because of the port or because of arm? I haven't had any issues with my arm. I had a lumpectomy first and since have had a mastectomy and so far no problems. I have kept up with all my activities and no issues.
3)I run a preschool out of my home so I was very concern with my WBC, but I continued to work the whole time I took chemo and never once had to have a shot to boost my count. I ate healthy and tried to get plenty of rest and tried to have the children wash their hands all the time. Try to stay positive and if your counts do go low they can give you a booster to help out with that. Trust me Chemo and Rads are not fun but they are doable and you can do this!

Journey · 03-23-2010, 08:46 AM

It was my right breast that had the tumor. A year ago i had a total hysterectomy and lost half my blood on that. Recovered then had a problem with my arm. Never been diagnosed with lymphodema but did go to chiroprator and did home excersize as well as seen a PT for a few sessions. Regained it back with some still residual effects. Researched lymphodema and had a lot of those side effects but all doc's said due to loss of blood caused that??? I appreciate the info on the golfing, I was concerned as it is my understanding if the tumor was in the right breast they will put the port on the other side and how that might effect my golf swing, or if I golf would that cause the port to somehow dislodge or cause infection etc. I want to stay involved with my sports as it is a big part of the things I love to do. I have been eating much healthier since all this came about keeping up with greens, fiber etc. Other concerns are how to avoid nausea EI: Best things to eat prior to chemo, how long to eat before and after chemo. All my life I have had a pretty strong stomach but I also understand that could all change with Chemo. Also has anyone had an occasional glass of wine through chemo or is that taboo? Want to do all the right things! Also just quit smoking and am concerned about needing help staying quit, any advise or meds the doc could possibly prescribe that would not effect chemo as all this does cause a lot of stess and smoking was a big vice I did to counter act that and do not want to fall prey to smoking again.

Jackie07 · 03-23-2010, 03:29 PM

Be sure your stomach is pretty empty before chemo. Protein takes a long time to digest, so no protein (meat, eggs, milk) within 4 hours before chemo.

Starches like bread and rice gets digested pretty fast (30 minutes?), but if there's butter or oil, it will take much longer.

I think clear juice is the best if you feel like needing something when it's close to chemo.

Chew gums if you feel like smoking. I know how hard it is. My 95-year-old Dad started to quit when he was retired from the military at age 52. He now smokes 4 cigarettes - 1 after each meal and before bed time.

Ask your doctor about the occassional glass of wine. They most likely will say it's OK. The port shouldn't interfere with your hobby. Do keep in mind that you will be feeling more tired than usual during certain days. So be careful when you are ready to hit the fareway.

If you happen to get cuts or other wounds, go to the doctor right away so they can do something to prevent infection. One time I got tiny bug bites in the back yard picking figs - it developed into cellulitis and I had to be hooked to IV for antibiotics. That's when I started wrapping up my right arm (by a lymphedema specialist) and later got compression sleeve and glove.

Journey · 03-24-2010, 05:00 AM

Thank you Jackie07 for the information. Forgot to ask doc last night re: chemo every three weeks. Does this mean have chemo in one week then wait 3 weeks so it would actually be in the 5th week that the next chemo would be given? Is yogurt doable prior to chemo I do love activia and is great for the digestive track. My Oncologist said I need to stay away from vit C and things with antioxidants in them as this does not allow the chemo to do it's job. Also I am at 50% for recurrence. Has anyone had a recurrence and if it does occur typically when does that happen? Well after chemo and radiation? Also trying to figure out how to put my diagnosis on my info to show so do not need to re-type it each time.

Westcoastgirl · 03-24-2010, 03:25 PM

I have two more Herceptin treatments left and my onc has told me I can have the portacath out shortly thereafter. I will be glad to have it gone but it has been wonderful to have my treatments given to me that way. I have never been offered the numbing agent and have never needed it, hardly feel it when they plug me in. I had some pain at the beginning but am now well used to it. I was doing pushups and the nurses told me not to do that anymore as they had a hard time getting a blood exchange so you will know when you have done the wrong exercise and stop it, simple as that. I would put my hand over the portacath in my chest and feel what it is doing while mimicking the exercise I wanted to do to figure out if I thought it was a good choice or not. I am assuming you had a lumpectomy so could probably start chemo soon. I had to wait a month after my mastectomies. I have talked to women that got their first chemo the day after their port placement. Treatments depend upon your onc~can be weekly or once every three weeks.

As far as your signature goes, ie. your treatment history click on User CP and on the left side you will find edit signature and you can create your history there. It helps others to understand better what advise to give you at what time. Take care, Carolyn