I've been diagnosed with stage 3 breast cancer. Both ductal and lobular. Had a port installed yesterday. Start Chemo on Monday. I am devastated. I would love to hear any encouraging words of wisdom and advice on what I am about to undertake. I have no support group. Anyone out there care to share your stories? I think losing my fabulous hair is hitting me harder than facing a mastectomy. Any advice on wigs?
Cancer - 12 Answers
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1 :
Nah. Wigs are silly. :) You should wear a Du-Rag instead. I think those are the coolest. I wear one all the time. Your reason is better than mine for losing hair! Mine is just falling out for no reason at all! :) My mother passed away from cervical cancer when I was 4, so I don't really know how she dealt with it. I do know that chemotherapy is nauseating and painful. the doctor will give you extremely potent narcotics to deal with the pain. The nausea can be settled with THC. On the days that you feel well, I would go and do things that are fun. I love hiking and rafting. Swimming. Anything outdoors takes my mind off of negativity. Remember, even when things are going well, live like you are dying! I'm praying for you Babz. -B&S
2 :
I had stage 3 breast cancer too, and I had a mastectomy, chemo and radiotherapy. In December it will be 5 years since my diagnosis and I'm currently fit and well with no sign of cancer at my last routine check-up. Chemo is rough, I know how you must be feeling at the moment. If you want any advice specifically on how to deal with chemo and its side effects, please feel free to email me. As for your hair - my advice is to have your hair cut short next week; don't wait till it starts to fall out. When it does start to fall, shave it off. When your hair is about to start falling out, your scalp gets tender and sore - think of the sensation when you've had your hair in a really tight pony tail and youve just let it down - it's something like that. The shorter the hair, the less the discomfort. And when it starts to fall, it gets EVERYWHERE - in your food, on your furniture and carpets, in your mouth. on your clothing; you never realise how much hair you have till you start to lose it. I know it's hard, but it's temporary; it will grow back, and often it starts to grow back before chemo is over. I can't advise on wigs, as I only wore mine once for about 15 minutes. I found it hot and scratchy, and preferred to wear cotton scarves. If you don't have a support group, you really can't do better than go to one or both of these websites; as well as having loads of information (especially the first one) they have forums where you can talk to women who are or have been in the same position, and just have a moan to people who'll understand if that's what you feel like doing: http://www.breastcancer.org http://breastcancercare.org.uk I didn't have a support group either, and online support networks were my lifeline. My best wishes for the rest of your treatment; good luck on Monday Edit* re the post above - I know it's kindly meant, but don't worry about pain, chemo isn't painful and you won't be prescribed narcotics for pain. The advice to get out and about and get fresh air when you feel up to it is good, bur swimming is not advised during chemo as your immunity is very low and you can't afford to risk picking up infections.
3 :
Babz, you have a support group right here! 4 years ago today I had a partial mastectomy followed by chemo and radiation for Stage II breast cancer. My sister is also a survivor and was a great support, sending silly cards, giving good advice, and calling frequently to see how I was doing. She even found a silly t-shirt I can't bear to part with that says "with a body like this, who needs hair". I am from a large family and they were all great support. My sisters even hosted a tea party and brought all sorts of hats. I opted not to wear wigs as they can be uncomfortable. Someone described going through treatment for cancer to be similar to being pregnant. It takes about 9 months, you get nausea, moody, constipated, may or may not gain weight and in the end you end up with a bald baby. My take on loosing my hair was I saved a lot of money at the hairdresser. There are some websites such as http://www.headcovers.com/caps/ that offer really cute caps and wigs. Also, if you want to talk, you can send me an email. You can also check out sites such as Susan Komen or Why Me
4 :
I'm sorry to hear about your diagnosis. I was diagnosed Stage 2B last March. I had a mastectomy, chemotherapy (with port also), radiation, herceptin treatments, hysterectomy & oopherectomy, It was a long year of surgeries and treatments, but I made it through and you will too. Just take it one day at a time, one treatment at a time. I cut my hair short a few weeks ahead of time and right after my first treatment I had a friend shave it down to stubble. I didn't want to wait until it fell out in clumps and this way it was gradual. I did get a wig but just wasnt comfortable wearing it. I wore turbins when it was cold and bandanas in the warmer weather. I had them in lots of different colors. Check out http://www.tlcdirect.org And I know it's difficult, but remember, the hair will grow back.. I have a full head of hair again:) Contact your local cancer society. They have a reach to recovery program where they can put you in contact with someone who has been down this same road and can help you along the way. They also have a workshop called Look Good Feel Better where they'll show you makeup tips for eyebrow and eyelash loss. Most will also give you a voucher towards a wig purchase if your insurance doesn't cover it. Ask the nurses in the chemo room if there is any local support groups. They can usually point you in the right direction. Also, make sure you speak up if you are having any problems....pain, nauseau from the chemo. Your oncologist has a multitude of medications he can prescribe to help with side effects. I learned the hard way...don't be afraid to take the medications. From the chemo I was tired and naseaus but that only lasted 3 or 4 days each time. Because I'm anemic, I automatically got the Neulesta shot to help boost the white blood cells. That caused bone pain with me so I did have pain medication for that. I slept alot when on that. If you go to http://www.thelydiaproject.org you can request a handmade tote be sent to you and you can use that to bring things with you to treatments. Contact http://www.chemoangels.com and http://www.angels2theheart.com for support. There are many caring volunteers who will send you uplifting and cheerful letters and cards while you're going through chemotherapy. http://www.networkofstrength.org also has breast cancer survivors you can speak to. Make sure you listen to your body. If you're tired...rest. If you have the energy, get out and get some fresh air. I had my "down" days and then I'd have a few good days. On those days I tried to go about my life as normally as possible. And I did find as the treatments progressed it took longer to "bounce" back. But it does get better! I know it's easier said than done, believe me....but try to stay positive...it does help get you through. If you need someone to talk to please feel free to contact me through my profile. Hang in there and best of luck. http://www.thesurvivormovie.com addtl comments: good suggestion, hanora, on the squirt bottle...I also used this. Depending on what type of chemo drugs used, you can get that metallic taste in your mouth. I was told to get "barley" pops to help with that. I found them at Gertrude Hawk. I was also told to prevent sores in the mouth..suck on some ice cubes just before chemo being administered. I ended up getting taxotere/carboplatin/herceptin and these didn't give me that metallic taste or sores.
5 :
Without knowing exactly which chemo drugs you are going to receive, I can't give you any specific advice. But you should ask about scalp-cooling treatment (cold cap), which in some cases can reduce or prevent chemo-related hair loss. Also, sometimes sucking ice chips/cubes during and for an hour or so after your chemo can reduce inflammation around your mouth. I'm sorry to hear you have little support. I'm an oncologist in the UK and I guess I'm just used to our patients getting a huge amount of support from our clinical team, especially our clinical nurse specialists. Whether or not you're from the UK, you may find cancerbackup.org very useful - I usually print out the chemo related stuff for my patients. Just enter the name of the chemo drug/regime (eg FEC, E-CMF, etc) into the search box and you'll get loads of info.
6 :
Wow...What a stressful thing to have to go through. I can't give you any words of wisdom, per say, because I have never gone through what you are going through. I will, however, say some prayers for you and send you many good wishes. God Bless.
7 :
My mother had breast cancer but only needed radiation. She was fine and two years later she was diagnosed with endometrial cancer, she was lucky and did not require chemo or radiation, only a complete hysterectomy. There are many cancer patients out there and of course you have a support group right here....Good Luck to you...I will keep you in my prayers...
8 :
I hated the idea of losing my hair too - but it was worse in the anticipation than in the reality. It happens at about the 2 week mark. One of my sons brought over his buzz cutter thing and buzzed off most of mine when it started dropping. I bought a wig but wore it only a few times - like when I had to renew my driver's license. I found it a pain - hot and uncomfortable so most of the time I wore a hat - they make special ones with deeper crowns for BC women, and also scarves. There is no good time to do this but in warm weather it is a bit better because without hair your head gets cold. I got a couple of terry cloth turban things to wear to bed. By the way my hair came back the same colour, thicker and more wavy. I did 4 rounds of dose dense AC followed by 4 rounds of dose dense taxol. Dose dense is when they treat you more frequently and if necessary add shots or meds. Nausea wasn't a big problem for me. The trick is to take those medications exactly as prescribed so the nausea doesn't have a chance to take hold. Drink lots of water to flush the chemo out of your system after treatment and this they didn't tell me. After you pee - use a squirt bottle and rinse your peritoneal area thoroughly before you wipe. Those chemo drugs will be in your urine (although greatly diluted) and they can be hard on the tender skin in that area. Biotene mouthwash and toothpaste will help with mouth tenderness - I didn't have much problem with that. You can get that at a drugstore. Many become sensitive to spicy foods so try to have some bland foods available. Frozen fruit bars became a staple for me and I found fruit yogurt appealing too. We made up a big batch of some beef/vegetable broth that was palatable when nothing else seemed edible. Water can take on a metallic taste so stock a few bottle of lightly flavored water or drop a lemon or lime slice in a glass of water - thin slice you don't want it too acidic. I strongly second the suggestion for breastcancer.org. The women there are very well informed and someone will come up with an answer or resource for your every question. Likely they will have a cohort starting chemo in July so you can join a group going through the same thing at the same time. And you can draw on the experience of women who have gone through it. Good luck
9 :
PLEASE YOU ARE MAKING THE WRONG DECISON !!!! chemo/radiation only makes things worse my mother has followed dr day for years she was supposed to die in 2005 SHE IS Alive and cancer-free go to this website http://www.drday.com/ I AM NOT A SELLER/promoter or any shit like that *remember you answered my question PLEASE DON'T DO IT CHEMO only makes things worse i really hope you listen to me you would literally be destroying yourself on monday please please listen to me
10 :
Oh Babz! I am so sorry to hear this. I haven't had any experience with this but we just got back from spending the evening with friends at the lake and we were talking about a woman in town here that has had the same diagnosis. That was shocking also, but the inspiring story I have to tell you follows. One of the guys said his aunt was diagnosed with breast cancer 47 years ago! She is now 94 years old and still lives alone and takes care of herself! How inspiring is that? And I once had an elderly man to tell me to spread the word about NEVER using anti-perspirants! Use only deodorants, because the aluminum in the anti-perspirant actually causes the breast cancer! I hope other women will read this too. So I have used only deodorants for the last ten years. I am praying for you and I would put your name on our prayer list at church, if you send it to me. You have my personal email. Feel free to write me any time and if there is anything I can ever do for you, I will. Try to keep your chin up and trust in God to help you get through this. Luv ya! :) PS The lady that is now 94 had a double masectomy back then. The better news from this is, now people can have reconstructive surgery.
11 :
omg babz i so didnt no :( im here for you and you are definately in my prayers! i just know you're gonna pull through!
12 :
Oh! I am so sorry to hear this. Yes losing your BEAUTIFUL hair will be hard but that will just be a reminder of how hard you have worked and how hard you have fought this!! Take care!!! I am here for you anytime you need to talk! Just e-mail me! You know my e-mail address!
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