Help! What is needed?

kmygil

Hi Everyone,

I need some advice and guidance. My sister will soon be undergoing a double mastectomy. She is in another country, and I would like to send her some things that she will need, but I have no idea what that would consist of. She has no plans for reconstruction at this time, but I understand there is a high risk of lymphedema and other issues. Are there special garments she will need? Special lotions or salves? Any range-of-motion exercise books? Please help me out and let me know what I should send. Thank you all from the bottom of my heart!

Kirsten

zahalene

Check it out...
You did not mention what country, but I would think the first step would be to talk to her at length about the quality of medical care where she is. She will want to do some research to find out if there is an agency similar to the American Cancer Society we have here.
It is hard to know what she will need ahead of time. Lymphedema may not be an issue for her, for instance. There will be time to address that situation if it arises later. As for special garments, she will need only what she is comfortable in for some time...our guy's old T-shirts are worth big bucks to most of us right after surgery (lol). Those are not too hard to find.
If she has radiation, an ointment called aquaphor (? sp) is a favorite with many of us, but there are other good skin treatments for radiation 'sunburn' as well.
For the time being, just research the net for after surgery exercises and be prepared to point her to a good site on that subject.
It is hard not to over-think or over-react to a situation like this when someone we love is involved, but try to take one step at a time and deal with whatever comes up as it appears.
And please continue to post here with any further questions you may have and let us know how your sister is doing.
God bless.

kmygil

zahalene said:

Check it out...
You did not mention what country, but I would think the first step would be to talk to her at length about the quality of medical care where she is. She will want to do some research to find out if there is an agency similar to the American Cancer Society we have here.
It is hard to know what she will need ahead of time. Lymphedema may not be an issue for her, for instance. There will be time to address that situation if it arises later. As for special garments, she will need only what she is comfortable in for some time...our guy's old T-shirts are worth big bucks to most of us right after surgery (lol). Those are not too hard to find.
If she has radiation, an ointment called aquaphor (? sp) is a favorite with many of us, but there are other good skin treatments for radiation 'sunburn' as well.
For the time being, just research the net for after surgery exercises and be prepared to point her to a good site on that subject.
It is hard not to over-think or over-react to a situation like this when someone we love is involved, but try to take one step at a time and deal with whatever comes up as it appears.
And please continue to post here with any further questions you may have and let us know how your sister is doing.
God bless.

Over-thinking...
Hi Zahalene.

Thanks so much for your quick response. You sound like you are dealing with your situation in a down-to-earth and real manner. May I ask what stage & type you have/had?

My sister is in Denmark where medicine is socialized For instance, she is getting ready for her 4th "shrinkage" chemo. After surgery, she will be having some more rounds of chemo plus radiation. She is Stage 3 with positive lymph nodes. However, they do not make a practice of inserting ports, so they have no problem with blowing out people's veins. I don't like it at all. They are not doing any scans--they just did ultrasounds of her liver, kidney, bladder. She had a chest x-ray, but cannot seem to get the results from that. Their reasoning against a CT scan was that they are "trying to maintain radiographic hygiene." Sounds like BS to me! Her tumor was over 7 cm before chemo and she has opted for a double mastectomy. They are trying to convince her to go with a lumpectomy. I don't understand their system except that they are cheap and I don't think their quality of care is very good.

I personally have been through colon and uterine cancer in the past 3 years, and the port was a lifesaver for me, especially since I had to have a pump for 2 days after the drips. It was very important for me to educate myself about everything, but my sister has been in denial mode and has not researched anything. She's just yessir and yes ma'am with her doctors, not asking any questions or looking forward to anticipate her needs. So my younger sister and I are trying to get her what she might need from this side of the pond.

I have urged her to come to this website, since the colon site was a lifeline for me during my bout. I'm still a frequent visitor there. But she says, "I'm not a survivor yet." I'm trying to explain that this site is not an "after the fact" site, but a living, organic help to survival.

At any rate, I will get some of the cream you suggested and send her some roomy t-shirts. My younger sister is an oral/maxillofacial surgeon and has had breast surgery herself, so she is going to travel to help my older sister with the drains etc. I will go after she re-starts chemo and begins radiation.

I wasn't this anxious when I was ill, because when you're in there fighting you feel like you're doing something. When you're a bystander you feel very helpless and look for any way to help. Her being so far away doesn't help either, because we have to rely on what she says instead of what we see.

Anyway, I'm rambling now, but I really thank you for your advice.

God bless,
Kirsten

Aortus

kmygil said:

Over-thinking...
Hi Zahalene.

Thanks so much for your quick response. You sound like you are dealing with your situation in a down-to-earth and real manner. May I ask what stage & type you have/had?

My sister is in Denmark where medicine is socialized For instance, she is getting ready for her 4th "shrinkage" chemo. After surgery, she will be having some more rounds of chemo plus radiation. She is Stage 3 with positive lymph nodes. However, they do not make a practice of inserting ports, so they have no problem with blowing out people's veins. I don't like it at all. They are not doing any scans--they just did ultrasounds of her liver, kidney, bladder. She had a chest x-ray, but cannot seem to get the results from that. Their reasoning against a CT scan was that they are "trying to maintain radiographic hygiene." Sounds like BS to me! Her tumor was over 7 cm before chemo and she has opted for a double mastectomy. They are trying to convince her to go with a lumpectomy. I don't understand their system except that they are cheap and I don't think their quality of care is very good.

I personally have been through colon and uterine cancer in the past 3 years, and the port was a lifesaver for me, especially since I had to have a pump for 2 days after the drips. It was very important for me to educate myself about everything, but my sister has been in denial mode and has not researched anything. She's just yessir and yes ma'am with her doctors, not asking any questions or looking forward to anticipate her needs. So my younger sister and I are trying to get her what she might need from this side of the pond.

I have urged her to come to this website, since the colon site was a lifeline for me during my bout. I'm still a frequent visitor there. But she says, "I'm not a survivor yet." I'm trying to explain that this site is not an "after the fact" site, but a living, organic help to survival.

At any rate, I will get some of the cream you suggested and send her some roomy t-shirts. My younger sister is an oral/maxillofacial surgeon and has had breast surgery herself, so she is going to travel to help my older sister with the drains etc. I will go after she re-starts chemo and begins radiation.

I wasn't this anxious when I was ill, because when you're in there fighting you feel like you're doing something. When you're a bystander you feel very helpless and look for any way to help. Her being so far away doesn't help either, because we have to rely on what she says instead of what we see.

Anyway, I'm rambling now, but I really thank you for your advice.

God bless,
Kirsten

You're not rambling at all, Kirsten
You are rightly concerned about your beloved sister.

After her mastectomy on 11/24, my beloved Moopy was diagnosed with stage IIIa, 6/15 lymph nodes involved. Even before the final pathology, she and I knew that mastectomy was the only option. We were presented with the option to preshrink the tumor with chemo, but our take on it was "thanks but no thanks." Get it out of there. Now.

As for the port, though she got pneumothorax and a two day hospital stay as a result of having it put in, she's sure glad (as you no doubt know) to have it in now. God bless your sister and all of you who are taking care of her. And God bless America too!

dbs1673

care package
What a supportive sister you are. I had a double mas in June and found wearing button down shirts were much easier than a pull over. Having to get my arms up and keeping those drains (I had 4) happy isn't easy. Small pillows under my arms also added comfort. Eventually a good book, red wine and chocolate are good too.

tasha_111

dbs1673 said:

care package
What a supportive sister you are. I had a double mas in June and found wearing button down shirts were much easier than a pull over. Having to get my arms up and keeping those drains (I had 4) happy isn't easy. Small pillows under my arms also added comfort. Eventually a good book, red wine and chocolate are good too.

Clothes
I agree totally with the above post. I found incredibly difficult to find front fastening (Button/Zip) clothes, but was in absolute agony trying to pull stuff over my head, however baggy. Good luck to you and your sister. J

mmontero38

Hi Kirsten, what great
Hi Kirsten, what great support your sister has. I also had a mastectomy in June 2007 and found these cami t shirts in Nordstrom that have pockets for the drains and are 100% soft cotton. They were great and still used them after I had my reconstruction. I don't know if your sister will need radiation, but Aquaphor which is what Zahalene recommended is great for burns and moisturizing. Like Zah said, soft t-shirts were good and buttoned down shirts also since it made it easier to put on. Make sure your sister exercises her arm also. Usually within 2 weeks she should start walking the wall and stretching as high as she can go so that she doesn't suffer from a frozen shoulder later on. It's hard to guess what she will need and not everyone will get lymphedema, but I'm sure that should she need anything else in the future you can always send her a care package. Tell her to join since we are one group of fairly knowledgeable men and women who are always ready to share our experiences. I wish her well. Hugs, Lili

ladybug22

The cami t shirt with
The cami t shirt with pockets for the drainds work great i still used the chemo if i have a top that ia a little low. I had mast. in Jan 07. I hated walked walked up the wall and streching mt arm that was slow going but she will get there i still stretch my arm now just becuse i cam tell your sister good luck. you could call the a.c.s and talk to them.

ladybug22

Kirsten
If you go to the American Cancer Society and look under mestectomy products you will find the pocket camisol. I would love to send yous sister a card. i am giving u my e address so u camn send me her address. please pu s sister cancer so i will open the e mail are i want open the mail . keirkiec@hotmail.com

zahalene

kmygil said:

Over-thinking...
Hi Zahalene.

Thanks so much for your quick response. You sound like you are dealing with your situation in a down-to-earth and real manner. May I ask what stage & type you have/had?

My sister is in Denmark where medicine is socialized For instance, she is getting ready for her 4th "shrinkage" chemo. After surgery, she will be having some more rounds of chemo plus radiation. She is Stage 3 with positive lymph nodes. However, they do not make a practice of inserting ports, so they have no problem with blowing out people's veins. I don't like it at all. They are not doing any scans--they just did ultrasounds of her liver, kidney, bladder. She had a chest x-ray, but cannot seem to get the results from that. Their reasoning against a CT scan was that they are "trying to maintain radiographic hygiene." Sounds like BS to me! Her tumor was over 7 cm before chemo and she has opted for a double mastectomy. They are trying to convince her to go with a lumpectomy. I don't understand their system except that they are cheap and I don't think their quality of care is very good.

I personally have been through colon and uterine cancer in the past 3 years, and the port was a lifesaver for me, especially since I had to have a pump for 2 days after the drips. It was very important for me to educate myself about everything, but my sister has been in denial mode and has not researched anything. She's just yessir and yes ma'am with her doctors, not asking any questions or looking forward to anticipate her needs. So my younger sister and I are trying to get her what she might need from this side of the pond.

I have urged her to come to this website, since the colon site was a lifeline for me during my bout. I'm still a frequent visitor there. But she says, "I'm not a survivor yet." I'm trying to explain that this site is not an "after the fact" site, but a living, organic help to survival.

At any rate, I will get some of the cream you suggested and send her some roomy t-shirts. My younger sister is an oral/maxillofacial surgeon and has had breast surgery herself, so she is going to travel to help my older sister with the drains etc. I will go after she re-starts chemo and begins radiation.

I wasn't this anxious when I was ill, because when you're in there fighting you feel like you're doing something. When you're a bystander you feel very helpless and look for any way to help. Her being so far away doesn't help either, because we have to rely on what she says instead of what we see.

Anyway, I'm rambling now, but I really thank you for your advice.

God bless,
Kirsten

Ummm....I forget....LOL
It has been 22 1/2 years since my first cancer diagnosis (was dx 3X between 1986 and 1996), so too much water under the bridge to even remember what stage they said I was but I think it was stage 2. They said 'we caught it early'. My second mastectomy (less than 2 years after the first) was also early stage. I also had positive lymph nodes in both cases. Then a bleep on the radar with bone mets a few years later...but hey I am 60 now, (was 38 at first dx), and doing good for an old woman! LOL
I think their reluctance to do a CT may be due to all the hoop-la lately over the supposition that too many of these tests produce a potentially dangerous level of radiation in us. If that were absolutely a given, I would be a dead duck! LOL I have had so many x-rays, scans, etc that I glow in the dark and don't fly because I'd never make it through the airport scanner....haha (jk)...I don't fly because I am a total chicken!
Anyway, I hope your sister sticks to her guns about the double mastectomy. I could have saved myself a ton of grief if I had got both done at once. No one can predict the future, but if her gut is telling her that that is the way to go then she needs to do that, if for no other reason than her future peace of mind.
The port thing is another issue she needs to be firm about. Back in 'my day' we got subclavian tubes instead of ports but even that was better than nothing.
She is so blessed to have you and your other sister in her life. Especially since she does not seem inclined to look carefully into her options herself. Just keep advising her of what you ladies already know and can find out and hopefully she will eventually take a more active roll in her treatment and recovery. I am sure I don't have to tell you that we all go through a period of 'I AIN'T DOIN' THIS...NO WAY, NO HOW' before we settle down and get 'real'.
God bless her and you and young sis and all those who love and care for her.

KathiM

I don't have much advice....
But I am sending my hugs...

Has your sis started fighting yet? This may help...tell her that she became a survivor from the day she was diagnosed. That is per the American Cancer Society.

I don't know about Denmark, but there is a cancer organization here in Holland...I just googled cancer help in Denmark and got:

http://www.cancerhelp.org.uk/help/default.asp?page=13676

under that:

Denmark

Kræftens Bekæmpelse (Danish Cancer Society)
Provides information for cancer patients in Danish.

Website: http://www.cancer.dk
Email: info@cancer.dk
Phone: 80 30 10 30 or 35 25 75 00


Hugs, Kathi

kmygil

THANK YOU!!!
Thank you Everyone for all your wonderful support and excellent input! I have shared these posts with my other sister, and we will try to be sure to get the needed things to Denmark. The members of these boards are the most awesome people on earth!!!!!

Hugs and Love,
Kirsten

rjjj

mmontero38 said:

Hi Kirsten, what great
Hi Kirsten, what great support your sister has. I also had a mastectomy in June 2007 and found these cami t shirts in Nordstrom that have pockets for the drains and are 100% soft cotton. They were great and still used them after I had my reconstruction. I don't know if your sister will need radiation, but Aquaphor which is what Zahalene recommended is great for burns and moisturizing. Like Zah said, soft t-shirts were good and buttoned down shirts also since it made it easier to put on. Make sure your sister exercises her arm also. Usually within 2 weeks she should start walking the wall and stretching as high as she can go so that she doesn't suffer from a frozen shoulder later on. It's hard to guess what she will need and not everyone will get lymphedema, but I'm sure that should she need anything else in the future you can always send her a care package. Tell her to join since we are one group of fairly knowledgeable men and women who are always ready to share our experiences. I wish her well. Hugs, Lili

What about arm sleves?
They have ordered me arm sleaves that are kinda like ted hose for the arm to stop swelling and lymphodema....I am six weeks out of surgery from my masectomy and they have ordered the wrong size twice and i am still waiting now i am not sure if i will need them or not although they say lymphodemia can occur years later. Anyone have a take on this?

Chellebug

rjjj said:

What about arm sleves?
They have ordered me arm sleaves that are kinda like ted hose for the arm to stop swelling and lymphodema....I am six weeks out of surgery from my masectomy and they have ordered the wrong size twice and i am still waiting now i am not sure if i will need them or not although they say lymphodemia can occur years later. Anyone have a take on this?

Arm Sleeves
I think each surgeon has his/her own perspective on this. If you are not experiencing arm pain or swelling there is no need to wear the sleeves. Since you had your lymph nodes removed, you may have some pain/numbness on the inside of your upper arm, but this is different than the pain/swelling associated with lymphadema.

When my lymphadema signs started, I went directly to my PT to get my arm measured. She sent me to a prosthetist to custom order my garments. I had my garments within a week. If/When the lymphadema comes, your arm doesn't just 'blow up' like a big balloon, it takes some time. Of course, the sooner you treat it the better.

Who knows what your arm size will be down the road. If you gain or lose 20 pounds that can really effect your arm size. So, getting a garment for the future may not be that helpful if you're a different size later on. A poor fitting garment is just as bad as no garment at all (if you have lymphadema).

I'm sorry you've had such a poor experience with getting the right garment size. But if you're not experiencing lymphadema now, there's no hurry to get a garment. New studies are showing that the 'old advice' of wearing a garment when you fly in a plane is not scientifically proven. And in fact, if you don't have lymphadema, you don't need to wear garments when you fly. That is the perspective of both my PT and my surgeon, but it is not the perspective of all PT's/surgeons. So you'll want to follow your doctors advice on that.

Whew! Well, that's my take on it!

Chelle

mmontero38

rjjj said:

What about arm sleves?
They have ordered me arm sleaves that are kinda like ted hose for the arm to stop swelling and lymphodema....I am six weeks out of surgery from my masectomy and they have ordered the wrong size twice and i am still waiting now i am not sure if i will need them or not although they say lymphodemia can occur years later. Anyone have a take on this?

I haven't had an swelling in
I haven't had an swelling in my arm so my oncologist said that unless I develop lymphedema, then I don't need it. I've also flown 4 times since the mastectomy and I was fine. I did drink a lot of water on the plane. And yes, you can develop it many years later, but honestly I won't worry about it until it happens. I did develop frozen shoulder, which I had to go to therapy for and is now fine. I joined a gym and am doing light weights on the upper body to strengthen the muscles but not more than 20 lbs. Hugs, Lili