Class of 2009 - Sisters in the same time frame
Comments
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Glad you have your pathology reports, Pam. Whew! Hopw the procedure goes well for you, and happy to hearr you are getting rid af anything suspicious. Kathy - have you had a neulasta shot? If so, that may be the cause of your back pain. Everyone else - been reading about you. Sending love.
Need help. I have got some major muscle stiffness going on. Major. It started in my abdomen - noticed pain after stretching when I woke up in the morning. Then it moved to legs and arms. Climbing stairs makes my thighs SCREAM. Fatigue is setting in, too. I have had two treataments - afraid of what two more are going to do. I still go to the pool to work out, and that is a mood booster as much as it is a body booster.
Have any of you had this? When did it stat? How long did it last?
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Anyone have something to offer re: pain Magob is experiencing since her second chemo TX?
Pam
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Thanks, Pam. I did get answers under a different topic on this site. Some do get this stiffness, and they say it can get more intense with each tx. One woman could not get to the top of the stairs after her last tx. They say the name of the game is use it or lose it. No matter how hard it is, working out, walking, ANYTHING is better than becoming idle.
There will be lots of good things to come in the new week ahead - hope you each soak them up and have good days. XO, Mary
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Hi, guys!
FYI--I had a melanoma in 2005 before bc. I get checked every 3 months and have scars all over the place from the moles that are "moderate" or on their way to melanoma but not there yet. My dermatologist said that radiation does not cause melanoma, but can cause squamous carcinoma (I have to check the name on that), so just to check it out from time to time.
BC does raise your risk of getting melanoma though. I just read a news article that they are finding a correlation between the two through Estrogen!! I am definitely the poster child now for that I guess (lovely!). If your E+, you might want to think of going to a dermatolgist at least once a year. My melanoma came out within one year as I was getting checked back then once a year.
Hugs!
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Thanks Cakeisgreat,
Boy, all this cancer stuff just snowballs! I'm adding the dermatologist to my "staff". Most of my existing moles are on my back so I won't see all the scars as they come off one at a time. My new thing is little hemangiomas popping up. Dermatologist said it is an hereditary thing. So far they kind of look like freckles. Could be worse.
Pam
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Hi all. Just got the results 8:30am this morning: IDC Stage One Grade One. 1.3cm. Not surprized, I suspected it last week after the second mammogram, ultrasound, and core needle biopsy. Doesn't run in my family, so that is a surprize. But I plan to face this straight on, no whining (yet anyway), and get as much information as possible. That led me to this forum. I am waiting for the pathology report to be emailed to me. Tomorrow I have a "general" meeting/class with an oncologist and surgeon, along with other newly diagnosed patients. Assume I'll know alot more after that. But I'd like to hear from you first hand, the best way to prepare for whatever is coming in the months ahead: meaning, I liked the comment of documenting all meetings, test results, surgeon's comments. I've started doing that immediately. What else?
Oh, I'm 56, healthy (!), with a very active life. I'm looking forward to getting to know you, hearing about your experiences.
Thanks, Debbie
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Hi Debbie - I'm new here too, just dx'd last month. Our reports appear to be similar, altho mine had a few other lovely little quirks (IDC, DCIS, LCIS, ALH). Sorry to "meet" you here on these boards, but hopefully you'll be able to get lots of info and support from all of the wonderful women here, as I already have.
Absolutely start documenting everything, before you get too far down the road & miss recording some phone calls or bits of info. Also helps keep track of bills (dates of svc, procedures, etc).
You'll probably need to know some other things about your specific diagnosis,such as node involvement, estrogen/progesterone indicators, HER2 status, and more. I've seen another poster refer to reports as "pathobabble", and it appears to be an excellent nickname!
All the best to you - maybe we'll figure this out together -
Erika
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Sorry you all are having to join us but glad you have found this excellent resource, the women are wonderful and so knowledgeable.
Some of us are in clinic situations where the system offers coordinated care and it is common for panels of doctors with different specialties to sit down together to discuss your case and treatment options. Others, like me, are dealing with different specialists in a serial way. In the latter situation direct consultation between your doctors can be less frequent, even rare.
I now believe the first care management plan is ideal but not available unless you live near a major breast cancer facility. So if you are going the individual route, you will need to take personal control of your course of treatment. That means researching so you know all the options, not just the biggies like what kind of surgery but the nuances like what screening tests you want. Every time you see a doctor you have to remind them to send reports to the other doctors on your "team". And be sure to keep a file of all your reports; op, lab, biopsy, etc. Familiarize yourself with the language and terminology so you can be aware of vaguely suspicious findings and ask for the proper follow up if no one brings it up. In my case, I asked my GP/internist to be a kind of central clearing house and everything gets sent to him. He is not a cancer specialist but he knows me and is a caring person and I always feel better when I check in with him. I feel like he looks at me as a whole person, not just a breast cancer.
Finally, learn to be patient and diplomatic. What seems and is a frightening emergency to you is routine to everyone you deal with. Be nice but doggedly determined in getting timely appointments and pathology reports. The squeaky wheel gets the grease, as someone told me.
Good luck and keep us all informed. Don't hesitate to ask questions. We are all learning.
Hugs,
Pam
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If you get an e-mail about a Report on Cancer from Johns Hopkins, it's a hoax and is full of myths about cancer occurrence and treatment. The Johns Hopkins website refutes it and goes point by point in stating the errors in the e-mail. I received the e-mail today, but one of the other recipients checked the Johns Hopkins site. I was already suspicious after reading the so-called report.
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Hi Erika; Nice to meet you! What's been happening with you since you were dx'd last month? Have you had to have surgery? After reading everyone's "stats" at the bottom of their posts, I realize how very fortunate I am with my current diagnosis of Stage 1. I spent most of today meeting my surgeon, oncologist, radiologist, having labwork done, and getting presurgery information. The specialists impressed upon me that the good news is the tumor is small and they don't see outward signs of lymph node issues. I am scheduled for lumpectomy on Oct 14, then 4-5 weeks of radiation starting Nov 14. There were other women in the surgery center with me, with much serious breast cancers, and my heart ACHED for them, now knowing more about this unfamiliar situation (cancer) I find myself in.
Hi Pam; Great suggestions and advice. Thank you! I've already found this forum to be of invaluable help. I went into my meeting today better armed with what questions to ask and what documents to request. It seems the hospital staff appreciated the fact that I had already started doing my homework, such as understanding what ER/PR/HER2 means (I didn't even know those things existed 48 hours ago), and deciphering my patho report.
Thank you all for sharing your experiences and expertise! You've helped this newbie breeze through The First 48!! (hours after dx)
Debbie
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There should be a diploma for reaching bc survival status! My head is crammed full of knowledge I've acquired since 7/24/09 when I learned I had a "positive" path report. This website has been invaluable and will be on my Christmas list for a donation.
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Hi - just adding my name to the list - there sure are a lot of us!
I'm 52, diagnosed IDC, 2 tumours: 2.6 cm and 1.5 cm, technically multicentric but because they're close together, BS is offering option of lumpectomy unless something else shows up on MRI, scheduled for Oct. 3. So I may or may not have to make the lump. vs. mast. decision. Bone scan and abdominal scan were clear, waiting on chest xray. Surgery scheduled for Oct. 15. No node involvement shown so far on U/S but final path will tell the tale.
My sister was diagnosed in Jan 2008, ILC, so I have some idea of what to expect from treatment. This board is great support, especially as I was waiting for test results and really didn't want to fill in my friends or family on the situation.
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Good AM to all,
Big day for me yesterday... had first post DX mammogram (both sides) since 2/09, 6 months post op. I was a little anxious. This might have been my first digital mammogram, I;m not sure if previous ones were. I was told I might have to have ultrasound if something suspicious showed. The radiologist read the films right away and sat down with me to discuss the findings, a VERY nice touch. Ultrasound not needed as everything was fine. He said I would be followed with ultrasound every 6 months for the next 2 years. I can handle that!
Bad news: all my previous mammogram films, the hard copies, are lost. I had to pick them up from the off-site hospital mammo facility prior to my mammotome biopsy in March 09 and take them to the hospital. Someone was supposed to return them to the mammo facility and the secretary at the biopsy location said they would get them back to the original office. No one knows where they are now. Yes, they have them in the computer but that is not like the real thing. I SHOULD HAVE DONE IT MYSELF!!!
Welcome to our support group, Luah. We all wish we didn't have to be here but what a great help we are to each other. We are here to commiserate and share. Hugs and love as you start your journey.
Pam
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Pam, so glad your mammogram showed everything is fine. That is wonderful to get the results so quickly instead of having to wait and worry.
How inexcusable for the personnel at a hospital to be so careless as to lose your mammogram films. Unbelievable.
Welcome, Luah, Sure hope everything works out well for you. It's a big shock at first adjusting to the reality of having bc, but time helps you adjust. I've lost the sense of fear and horror and am thankful for early diagnosis and good drs.to help me through the surgery phase.
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Good Evening Ladies:
I am just checking in. I haven't posted in a while and am trying to go back in to the swing of things and read up on what I have missed.
I did go on the cruise and it was a blast. No treatments, tests, doctors and no work for over a week. I stayed so busy that I didn't have time to think about any of this stuff.
Well, I am back to reality now and tomorrow I will find out when my PET scan is and if my insurance approve the OncoType DX test. If not, then I guess I will go back to my Rad Onc and get my rad tx started. I certainly am not looking forward to rads, but I guess I am ready to get it started, so it can be over.
Sounds like everyone has been busy. Who thought that BC could be such a full time job.
Hope everyone has a great start to the week and had a restful weekend.
Juannelle
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Hi everyone; Another hot day here in Northern California, so I've spent most of the afternoon reading the earlier posts of the Class of 2009, and catching up to you. So I was startled to read several pages back, about SNB and the SHOTS??? (I assume SNB means Sentinel Node Biopsy? Sorry...I'm still learning what all the abbreviations mean). I am having a lumpectomy with SNB on Oct 14: funny no one on my surgical team told me about the shots with no painkiller. Great. I'm already wondering why I'm to arrive at the hospital at 6am, wait 'till 8am to get x-rays, 9am in nuclear medicine, then surgery another hour+ after that? When I asked the surgery scheduler what I'd be doing for the two hours between 6-8am, she said "Sitting and waiting. Be sure to bring a book". And what's this about another needle placed in the breast pre-surgery?
Fill-me-in!
Debbie
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I had lumpectomy about 3 weeks ago and just had a re-excision a couple of days ago. To me the injection of the nuclear medicine and the wire placement was not as bad as the core biopsy. You dont really feel anything with the wire placement because they numb the breast area. I had to wait 2 1/2 hours before surgery. I brought my IPOD which really helped me alot. Good Luck to you!
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Debbie - The SNB needs to be done in nuclear medicine where they will inject in either 2 or 4 spots around the nipple. I was told that the injection needs to be done just under the skin which apparently is quite hard to do and was a little painful (more like a sting and burning sensation). I too did not find this as bad as my core biopsy (but that was due to position of tumour and being able to see it under mammo). After these "shots" you will lie very still while a continuous xray is being performed so that they know which lymph node it will drain to - the sentinel node. They let my husband come in with me for this and he was able to watch the screen. The wire placement was not bad at all as you are numbed a bit.... it is just weird having a wire sticking out (taped to you) of your body! There is a thread about abbreviations for newbies..... i will pm you where to find it! Look at the top of screen under personal messages.
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Hi One-L,
Welcome back to the real world. Are you scheduled to start RADs or is it sill up in the air? Did you go on a cruise? I can't remember
HI Debby,
Sorry you are having to go thru this... we all know how difficult it is. I, too, was not told what to expect in the hours before surgery. I guess there is no way to describe it without making it sound worse than it turns out to be. The first step I had was the radioactive dye was injected, maybe seven little injections all around the perimeter of the nipple. It stung like a bee sting but was not terribly painful. The tech, a woman, massaged my breast and then I was scanned to map the drainage of the lymph system. A "map" is produced that shows the first lymph node, the sentinel node, and one or two or three subsequent. The nodes line up like a string of pearls. First, the dye itself is blue or purple so when the surgeon starts looking for nodes he can see them. And second, he/she uses a kind of geiger counter that measures the radioactivity to confirm that he is removing the sentinel node, the one that got the most dye. It is not pleasant but soooo much better than just having them go in and scoop out all the lymph nodes they can find. The PO pain is much less, smaller incision, and much less likelihood of lymphadema, I think.
I don't know if everyone gets the wire placement. It is done to pinpoint the tumor location so the surgeon knows exactly what to remove. To me it was kind of like the mammotome core biopsy but sitting up instead of lying down. A mammogram is taken to spot the tumor or what ever remains of it after your biopsy, while still pressed between the mammogram plates, your breast is numbed and thin wire is threaded into the breast so the end of it marks the tumor location. Some of the wire (remember, it is very thin) sticks out and is taped down to your skin externally. I was so numb that I felt nothing, even during the interval before surgery.
I would say each procedure took an hour, with prepping and waiting and doing. Everyone was very considerate and as gentle as possible. Oh... I started out in the surgery suite where they wanted me to undress, gown up, get that IV thingee in the back of my hand and sign all those forms. They wanted all clothing removed but I asked why couldn't I keep panties and the loose long pants and socks on... with some reservations, they let me! I was so glad. I was wheeled all over the place for the two procedures and I felt much less exposed, moving on and off tables was was easier to maintain my modesty (bottom half), and I was a lot warmer than if I had only had the hospital gown and a light blanket. As soon as I got back to the pre-op location I took everything off and everybody was happy.
I hope our sharing does not alarm you. I thought the core biopsy was horrible and dehumanizing and much worse than the pre-op procedures on the day of surgery. You've already made it through what I think of as the worst part. I hope it all goes smoothly and you have a good report when all is said and done. We are all with you in spirit... no one who has not been through all of this can really understand.
hugs,
Pam
I too had my I-Pod and it helped me relax when I was just sitting and waiting.
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Nothing we haven't heard before but bears repeating:
The American Institute for Cancer Research just published its most up-to-date food, nutrition and activity recommendations to help prevent cancer. Here are eight quick tips from the report:Be as lean as possible without becoming underweight.Be physically active for at least 30 minutes every day.Avoid sugary drinks. Limit consumption of energy-dense foods (particularly processed foods high in added sugar, or low in fiber, or high in fat).Eat more of a variety of vegetables, fruits, whole grains and legumes, such as beans.Limit consumption of red meats (such as beef, pork and lamb) and avoid processed meats.If alcohol is consumed at all, limit alcoholic drinks to two for men and one for women a day.Limit consumption of salty foods and foods processed with salt (sodium).Don't use supplements to protect against cancer.0 -
Hi Ladies,
Well, starting week 2 of radiation treatment. No showing of any side effects just yet. A little dull ache in my scar area, but not sure if that is related to rads. I haven't posted in a while, I have been busy with work and going back and forth to treatment every day. Just trying to get back to my life, it is kinda hard.
Welcome to all of the newcomers that have posted since I was on last. I am sorry you had to join our group, but there is a wealth of care and understanding you will find here.
Hope all is well with you all.
Hugs Jen
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pj, Cheetos probably doesn't make the cut.
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Thank you all for your lumpectomy experience, I feel more confident now. Pam--great detail, I really appreciate your sharing it. I had my husband read it to prepare him too! I continue to remind myself that a few needles in the breast are nothing compared to the pain and procedures other women are going through, so I consider myself fortunate. I cannot tell you how grateful I am to this website and forum for the support...
Debbie
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pj, baked cheetos are on my grocery shopping list as a staple. I buy the boxes with 5 little bags, 100 cal. each. and have a bag with my lunch, 1/2 a sandwich made with the dense wheat bread that only seems to come in oversize slices. A whole sandwich is too big.
My injection for the SNB was the most painful medical procedure I've ever experienced. The pain lasted for about 20 min. afterward but then went away. I was stuck 4 times, top, bottom, and both sides of the nipple, with the same large needle. It got duller with each puncture. By comparison, the needle biopsy was relatively painless, but caused a big purple bruise and soreness for about 2 wks.
But I survived all of it! Half a glass full!
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CaroleH and Elimar,
I love Cheetos too. Anything salty and crunchy. We've got to have some vices! Aren't some of the grain breads delicious! I used to think of myself as a white bread kind of girl but 7 grains are great and sour dough is to die for. Oatmeal is divine. But it is still a shock to pay, sometimes, $3.00 for a loaf of bread!
I hope I did not minimize things for Debbie. Everyone's experience is unique. And a big part of it must be in the hands of the nurse or tech who is performing the procedure. I hope she has my experience and not yours! You are braver than I if you saw the needle! I squeezed my eyes closed until the bad part was over
Too bad we can't just sleep through the whole experience.Another good thing my facility did that was new for me... before putting the IV line in on the back of my hand the nurse injected a little xylocaine or lidocaine. It was virtually pain-free when she went fishing for a good vein. Nice touch. Why did it take 50 years for someone to figure out to do that? Kind of like wheels on luggage, an idea too slow in coming.
This thought just occurred to me... maybe the more injections (for SNB) the less material has to be pushed into the tissue at each site, hence less discomfort. Just a theory. I hope I do not have the opportunity to test it out ever again.
Pam
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Either way, painless or painful, I don't have a choice but to do the SNB. I'll definitely be asking for lidocaine before every needle stick! This time frame until my surgery (Oct 14th) is killing me....just get the darned thing over with already!
Ok, I'm heading to the drinking forum of this website (boy was I surprized to see that!).
Everyone have a good evening.
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Hi, guys! The core biopsy was very painful for me, but I think it was because they said I wouldnt feel a thing, and all of the suddent this big thing hits me, then she was cutting me and I felt it. I was MAD because I felt like they knew all along that it would hurt, and I could have prepared for it better if they told me it might hurt. After that, I was freaking out with fear, etc. I was traumatized because my first mammo was one day before and it was supposed to be just a baseline. I had never expected anything would come out of it.
The wire things seemed scary, but after going through the core biopsy, the pain was nothing in comparison. It was like a shot. The nuclear shot didnt hurt me much, just a pinch and a burn.
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My needle/shot experiences include:
Core Needle Biopsy - pressure, no pain really, big purple bruise.
Radioactive shot - hurting to the level that I let out a loud involuntary OOOOWW sound, but stayed on table; smaller purple bruise BUT the only purple area of the whole lumpectomy procedure.
Wire Localization - Numbed in that area, no pain, easy peasey, no bruise.
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For members of the Class who are considering BMX... this is an interesting article. It just appeared on my news home page. I'm sorry, I don't know how to hyperlink it so you will have to copy and paste.
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Pam,
I did go on the cruise, it was wonderful. One whole week of no doctors, appointments or tests. It was really great.
I am sitting in limbo right now. I went to the Med Onc for the first time the Monday before I left on the cruise and they were going to check to see if my insurance would approve the PET and the Oncotype DX test. That gave them two weeks to get it approved. I would think that would be enough time. However, I called them today and the girl I talked to said "Oh, there has been plenty of time to know something, I will give you a call back". Well, I didn't hear from them and am questioning if I should find another doctor. I am not sure they are very efficient. I think I will talk to my Breast Health Navigator tomorrow and see what she thinks.
This is the 7th week since my surgery and I would have thought that something would be happening now. I am not sure what I need to do.
Do you have any words of wisdom?
Juannelle
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