Blood draws...is it true??

dmc_emmy

Eil4186 said:

I only had 2 lymphnodes
I only had 2 lymphnodes removed. Can I have pressure and blood draw from that arm?

Eil-from what the drs told me
the answer would be, "No." I would confirm with your drs, but as was posted earlier in reponse to T's post, once the lymph nodes have been removed the fluid is blocked and it can "back-up" into your ribcage and/or under your arm, or it can effect your entire arm and cause it to swell. Once you've had lyphodema, the chance of recurrance is more common and, it seems, that it comes back worse each time. I didn't have my first occurance almsost a year after surgery. I am dealing with this right now, and it is no picnic-that's for sure.
dmc

phoenixrising

I think I was told in the
I think I was told in the hospital by the nurses after the mastectomy. I did not have the full axillary dissection but they did take all the sentinels (6). Since then though I have had blood drawn from that side due to the chemo damaging the main vein on my good side. But not very often. I talked to my onc about it once and he indicated he wasn't so sure that we needed quite that much precaution (I'm not sure what he was thinking) . So for me if they can get it from the good side then fine but if not then I tell them to go for the other. This story might be different if I'd had all the lymph nodes removed, but I figure I've still got enough to handle whatever.

I think it's strange they didn't tell you but perhaps everyone assumed someone told you.
Glad you found out now though and will now protect the arm.

jan

Akiss4me

phoenixrising said:

I think I was told in the
I think I was told in the hospital by the nurses after the mastectomy. I did not have the full axillary dissection but they did take all the sentinels (6). Since then though I have had blood drawn from that side due to the chemo damaging the main vein on my good side. But not very often. I talked to my onc about it once and he indicated he wasn't so sure that we needed quite that much precaution (I'm not sure what he was thinking) . So for me if they can get it from the good side then fine but if not then I tell them to go for the other. This story might be different if I'd had all the lymph nodes removed, but I figure I've still got enough to handle whatever.

I think it's strange they didn't tell you but perhaps everyone assumed someone told you.
Glad you found out now though and will now protect the arm.

jan

Another point....
You have hundreds of lymph nodes in your body. About 30-40 that handle the fluid from your breast area that are under your arm and by your collar bone.
7 years ago I had 3 nodes removed in a previous lumpectomy and was told not to use that arm. Well over the years I had forgotten. I was pretty lucky and also I still had quite a few nodes left to handle the flow. This time I only had 3 nodes removed again. They once again reminded me about not using that arm. However, this time they stressed to remember as now I was at a greater risk.
They also told me to use lotion to keep my arm supple because dry skin leaves an opening for bacteria. Never, ever let a manicurist cut your cuticles. Always put topical antibiotics on any bug bites. Only use an electric razor. The list is pretty long, but mostly common sense on being extra cautious.
Taleena, I can't believe they didn't tell you. That is so negligent. But we have your back!! And I'm so sorry your test came back in the middle. What did your percentage of reoccurance say (it's in a shaded area on one of the pages). My score was barely a 1 which put my reoccurance score at a 4%. Pammy

susie09

taleena said:

Thank you .. all my beautiful Sisters!!!!!!!!!!!!!!!!!!!!!!!!!!!
See I told you all I was uncomfortable with my medical team. do you believe me now???.. nope... no one told me.... Okay.. so now I have reading assignments... thanks Susan... and writing assingments for future surgeries...writing on the forearm seems like a good idea...lol.. (I may seriously do that in the future if ever I need surgery again).. and need to search the net for a medical alert braclet.. (a pretty one and hopefully no one will mistaken it for just a piece of jewlery)... then I need to have my drivers license changed to take off "donor"... Claudia.. I don't have a piano... think I can donate my guitar??? WOW you would think that something that important would be conveyed to the patient... got it.. hubby (Dennis... aka Denny) now knows too.. and told me to tell you all "Thank You" he agreed that it was pretty important info.

So.. I called Genomic Health again...I'm telling you ... patience is not my virtue... they completed the test and faxed the results to my old onco.. .who received it on the 7th... let's see what is today???? Oh yeah that's right it's only three days later... So at 4:30 I called his office.. yes they have the report no they won't tell me the results.. dr hasn't viewed them yet.. yadda yadda yadda... So I get into my car drive down there and say ... make me a copy please....

So now I don't have to sit through the weekend... the damn sagga continues... not under 18 not over 31... instead ... 22 So... I guess I need to switch my favorite color to "grey".. that seems to be the color of choice....

Ladies.. please help ... I just want them to tell me what to do... I'll do it... anything... .but this; everything being in the middle is really the **its... hot cold... under over... one or the other... someone draw a line.... so to take it all out on that crappy med team I had... can you believe they were going to make me go through another weekend not knowing anything..... well... come to think of it .... I still don't know anything do I??... and considering how informative they are to their patience... well nothing surprises me anymore!!

Thank God for my NEW MEDICAL TEAM!!

It sounds like you know what
It sounds like you know what you want to do Taleena. Noone needs to tell you. It is just scary. Being in the "grey" area leaves you in limbo. But, I would not want the bc to come back and for me to not have taken that next step and taken the chemo. I would always wonder if I just would have taken it, would it have come back. Or, that is what I would do. You do what you want. Noone should have to tell you. Do what is best for you and do what will keep the beast away. Good luck in your decision.

tjhay

not on no blood draws but no
not on no blood draws but no blood pressuer taken on that arm either

fauxma

taleena said:

Thank you .. all my beautiful Sisters!!!!!!!!!!!!!!!!!!!!!!!!!!!
See I told you all I was uncomfortable with my medical team. do you believe me now???.. nope... no one told me.... Okay.. so now I have reading assignments... thanks Susan... and writing assingments for future surgeries...writing on the forearm seems like a good idea...lol.. (I may seriously do that in the future if ever I need surgery again).. and need to search the net for a medical alert braclet.. (a pretty one and hopefully no one will mistaken it for just a piece of jewlery)... then I need to have my drivers license changed to take off "donor"... Claudia.. I don't have a piano... think I can donate my guitar??? WOW you would think that something that important would be conveyed to the patient... got it.. hubby (Dennis... aka Denny) now knows too.. and told me to tell you all "Thank You" he agreed that it was pretty important info.

So.. I called Genomic Health again...I'm telling you ... patience is not my virtue... they completed the test and faxed the results to my old onco.. .who received it on the 7th... let's see what is today???? Oh yeah that's right it's only three days later... So at 4:30 I called his office.. yes they have the report no they won't tell me the results.. dr hasn't viewed them yet.. yadda yadda yadda... So I get into my car drive down there and say ... make me a copy please....

So now I don't have to sit through the weekend... the damn sagga continues... not under 18 not over 31... instead ... 22 So... I guess I need to switch my favorite color to "grey".. that seems to be the color of choice....

Ladies.. please help ... I just want them to tell me what to do... I'll do it... anything... .but this; everything being in the middle is really the **its... hot cold... under over... one or the other... someone draw a line.... so to take it all out on that crappy med team I had... can you believe they were going to make me go through another weekend not knowing anything..... well... come to think of it .... I still don't know anything do I??... and considering how informative they are to their patience... well nothing surprises me anymore!!

Thank God for my NEW MEDICAL TEAM!!

Taleena I was a 22 also.
Taleena I was a 22 also. It's why I am glad that I am doing the clinical trial. Because it's in the numbers that are grey, they randomized me and that left the decision up to them. It's really an unknown whether chemo will really help or not so I was okay with whichever group I was placed in. I am in the no chemo group. I know others have said they would do chemo if they were in the grey area. Others have said no. I hemmed and hawed about it and thought about quitting the trial and doing the chemo. I asked my oncologist what she would have suggested if I was not in the study. She said it is a hard call but she would have said no chemo but she would do whatever I wanted. So I figured why not just stay in the study and let them decide. I don't regret the decision and if it recurs I'll do chemo then. And even (as someone suggested) I have made the wrong decision and chemo won't help, I still will not have regrets. I will be watched carefully and monitored closely because of this study so I think that anything that might occur would be caught early. But the bottom line is that I am doing something for the future of breast cancer treatments. I also took into account my age (61) etc. I have had several cancers and I have been fortunate in my treatments and prognosis so I will hope for the best and accept the rest.
Stef

taleena

Akiss4me said:

Another point....
You have hundreds of lymph nodes in your body. About 30-40 that handle the fluid from your breast area that are under your arm and by your collar bone.
7 years ago I had 3 nodes removed in a previous lumpectomy and was told not to use that arm. Well over the years I had forgotten. I was pretty lucky and also I still had quite a few nodes left to handle the flow. This time I only had 3 nodes removed again. They once again reminded me about not using that arm. However, this time they stressed to remember as now I was at a greater risk.
They also told me to use lotion to keep my arm supple because dry skin leaves an opening for bacteria. Never, ever let a manicurist cut your cuticles. Always put topical antibiotics on any bug bites. Only use an electric razor. The list is pretty long, but mostly common sense on being extra cautious.
Taleena, I can't believe they didn't tell you. That is so negligent. But we have your back!! And I'm so sorry your test came back in the middle. What did your percentage of reoccurance say (it's in a shaded area on one of the pages). My score was barely a 1 which put my reoccurance score at a 4%. Pammy

The coordinating % of
The coordinating % of reoccurance at my score of 22 is 14%...

I will fax this report to my NEW onco on Monday... I was really hopeing it would come back low, low.. under 10 that was 1st choice... or high (that was the second choice)... that way one way or the other I would know what I was coming home from vacation to.... so.... still in the dark... but yes, I am going to apply for the trial... at least do something positive with it... it will be my way of contributing for a future cure so that maybe my daughter will not have to go through it too..

Tos

tjhay said:

not on no blood draws but no
not on no blood draws but no blood pressuer taken on that arm either

No blood draws
My first diagnosis I had a lumpectomy and was told about blood draws and bp being a no-no.

Four yrs later I was diagnosed on the other side, had a bilat mast told many times by medical staff a no-no for the draws or bp.

So what they do is use my lower leg, the calf area for bp. I have kept my port now for two years so I get blood draws from the port. Also have had a blood draw from the top of my foot.

Another thing to remember with an affected side or both is to watch the weight you are carrying. I have read 15lbs is about it. Careful when you are coming back from shopping and have sacks to carry. Have someone help you.

Also, house cleaning or anything you might do with an affected arm in a repitive motion like scrubbing something.

I do have some lymphedema, one arm worse than the other and some truncal. I personally have found certain things I do can cause a flair. I held my arm up too long one time hanging a bird feeder, boy the pain and swelling I got from that was no picnic. With time it settled down, we just need to be a bit cautious. We don't need more problems than we have.

dyaneb123

They sometimes take my blood
They sometimes take my blood pressure on my calf if they are using my good arm for drawing blood.

DianeBC

dyaneb123 said:

They sometimes take my blood
They sometimes take my blood pressure on my calf if they are using my good arm for drawing blood.

If you have lymph nodes
If you have lymph nodes removed on both sides, they usually take your blood pressure in your thigh. You do have to be very careful. And, why do some oncologist's use different numbers for the Oncotype test? Mine said anything over 18 needed chemo.

lynn1950

I vote for caution
Taleena, I am so sorry that you weren't told about lymphedema and that your scores make the kind of treatment choices you make such a cr-p shoot. Luckily, you have no ill effects from not knowing. This site is such a godsend. My best to you, Lynn

Akiss4me

DianeBC said:

If you have lymph nodes
If you have lymph nodes removed on both sides, they usually take your blood pressure in your thigh. You do have to be very careful. And, why do some oncologist's use different numbers for the Oncotype test? Mine said anything over 18 needed chemo.

Different reasons
If an Oncologist is using the test as a tool alone, anything under 18 is no chemo, anything over 30 is chemo. Middle ground is a big discussion between the two of you.

If an Oncologist is using the test as a tool and you are part of the clinical trial, then the numbers are different because they are going by the trial numbers. The test has already been proven for the standard numbers like you Doc is going by, but the trial that is going on now has a different criteria that is just for this particular trial.

If you are falling between the middle numbers in the trial and your Doc prefers to treat you using the standard numbers, then you would opt out of the trial and go by your Doc's advice.

That is why you are seeing two different numbers on the board. Some people are having it done as a tool and some are in the clinical trial.

Hope this helps to explain. Pammy

taleena

lynn1950 said:

I vote for caution
Taleena, I am so sorry that you weren't told about lymphedema and that your scores make the kind of treatment choices you make such a cr-p shoot. Luckily, you have no ill effects from not knowing. This site is such a godsend. My best to you, Lynn

Thanks Lynn... I really
Thanks Lynn... I really appreciate it... I guess I've always been a bit of a gamble...(well I do love Las Vegas..lol)... so let's try a round of craps... and your right either way I know it will work out... I'm just ready to get started already.... (well after I get back from vacation..)

Hugs,

~T

aurora2009

taleena said:

Thanks Lynn... I really
Thanks Lynn... I really appreciate it... I guess I've always been a bit of a gamble...(well I do love Las Vegas..lol)... so let's try a round of craps... and your right either way I know it will work out... I'm just ready to get started already.... (well after I get back from vacation..)

Hugs,

~T

Oh My Gosh
Taleena your not the only onr I just had surgury last Wednesday and knew nothing about not having blood draws or pressure tests. i'll tell you what I have alot of questions for my surgeon tomorrow.
Why do we have to be carefull and what are the risks of having these things done after a lunpectomy? I don't even know what or how you get lynphodema?
Wow I'm very confused now

cabbott

aurora2009 said:

Oh My Gosh
Taleena your not the only onr I just had surgury last Wednesday and knew nothing about not having blood draws or pressure tests. i'll tell you what I have alot of questions for my surgeon tomorrow.
Why do we have to be carefull and what are the risks of having these things done after a lunpectomy? I don't even know what or how you get lynphodema?
Wow I'm very confused now

Lymphadema Protection
There is a whole web site devoted to the problems of lymphadema. Preventing it is a whole lot easier that treating it, though there are kinds of therapeutic massage that can help reduce the swelling should you become afflicted with lymphadema. Essentially you want to keep any kind of possible break in the skin or injury to the arm from happening. Our bodies send lymnph fluid to deal with infections, bug bites, broken bones, and cuts and scrapes. The list for protecting your arm can be rather intimidating at first, but when you know that you just want to prevent excess fluid from coming into your arm it helps. In the kitchen, buy and use rubber gloves. Use a good lotion on your skin after doing dishes. Don't put anything (think watches, grocery bags, bracelets) on the arm on the mastectomy side. Avoid the chance of burns by using warm not hot water for doing dishes and for bathing. In the bathroom throw away your disposable razor or at least don't use it on that arm. Use an electric razor instead. That is to avoid any tiny nicks that may cause an infection. Again, avoid the hot water. If it makes your skin turn red, it is too hot! This goes for hot tubs too. I don't have one, but I hear they often carry infections and this is what you obviously don't want. In the gardening, use gloves to protect your skin. Always use sunscreen so you don't get a sunburn on that arm. Avoid broken bones by wearing good shoes that don't slip. Avoid bug bites by wearing insect repellant. Avoid lifting more than 15 pounds or anything that feels too heavy. Don't do actions that are very repetitious to the point of being sore. Lots and lots of don'ts I know....

If you do get a break in your skin, treat immediately with soap and water and a good quality antibiotic ointment. Keep clean. If any redness develops, start an oral antibiotic until it is gone. Have a close relationship with a doctor that understands this ailment. Lots of doctors don't. You may want a prescription or a bottle of antibiotic pills just in case so you don't wait the weekend or even overnight to start.

Do I do all these things? I'm not perfect. The sentinel node biopsy protects me somewhat and I've only had swelling twice. Both times we caught it early and stopped it. Thanks for the reminder to be careful. With time I get lazy...

C. Abbott

KathiM

cats_toy said:

along with everyone else...
yes, it is true. What you will also find out is they will never let you donate blood or organs. And Claudia is smart having had a bracelet made up because if you are ever in an accident and not aware, they may put the blood pressure cuff or iv there.
I have had everyone I ever dealt with during and after surgery tell me the same thing. So ~T, be aware from now on, and only offer your good arm.

=^..^=

I am a blood donor....
And, when I mentioned my breast cancer/rectal cancer, they asked how long it had been since treatment...

I told them about the Tamoxifen, and that treatment was over 3 years ago...

They checked...and...yes, I CAN give blood again! I was as surprised as I could be!!!!

I have donated over 5 gallons so far, and am glad I can go back to it...

Hugs, Kathi

survivorbc09

Those are %'s for a
Those are %'s for a recurrence, what are the percentages for a new cancer? Or, do they tell them? Or, can they? Because those are 2 totally different things.

outdoorgirl

KathiM said:

I am a blood donor....
And, when I mentioned my breast cancer/rectal cancer, they asked how long it had been since treatment...

I told them about the Tamoxifen, and that treatment was over 3 years ago...

They checked...and...yes, I CAN give blood again! I was as surprised as I could be!!!!

I have donated over 5 gallons so far, and am glad I can go back to it...

Hugs, Kathi

I was
told that I couldn't donate blood and was told from someone who was working a bone marrow donation booth at a Relay For Life that I could never donate bone marrow after having bc.

jk1952

outdoorgirl said:

I was
told that I couldn't donate blood and was told from someone who was working a bone marrow donation booth at a Relay For Life that I could never donate bone marrow after having bc.

I was told that I could give

I was told that I could give blood if it had been five years since I had any 'internal' cancer. As far as bone marrow, I don't think that we are ever able to do that.

Joyce

Christmas Girl

jk1952 said:

I was told that I could give

I was told that I could give blood if it had been five years since I had any 'internal' cancer. As far as bone marrow, I don't think that we are ever able to do that.

Joyce

No donations...
I was told, emphatically: no blood, no organs, no donations, ever.