Class of 2009 - Sisters in the same time frame
Comments
-
I must have a very high tolerance for pain. When I had my lumpectomy and SNB, I had no problems with range of motion in my arm. I could always lift my arm over my head. I had 3 nodes removed, maybe that is why. I have not had any numbness or anything. I also didn't think that the SN injection was that bad. Maybe I am just weird or had a really good doctor.
Juannelle
0 -
I thought the injections for the SNB were extremely painful. I too was crying and I think I almost squeezed my husband's hand off!! I didn't really have trouble with my range of motion after the SNB. I had it a few weeks before my BLM. After the BLM I did have much decreased range of motion but PT really helped with that. The SNB are is still a little numb and sometimes sore.
TCK
0 -
I agree. The injection for the SN was the worst part of my BLM. Even though they took 18 nodes I managed to work daily at getting range of motion back. I could see changes every day and within about 2 months I could start yoga again.
It's been radiation that has decreased my range and made the tissue across my chest and under my arm very very stiff. It feels like in spite of how hard I am working to stay flexible, those muscles seem to have lost all ability to be elastic. I've said this before, that it reminds me of when you destroy tupperware in the dishwasher and the lids never fit again.
0 -
I have to 3rd or 4th that sentiment... the injection for the SNB was more painful than I could describe. I had mine done the same day as a lumpectomy, then 2 months later had another one done the day of the BMX. The second time I was prepared for the pain of injection, but I was not allowed to have anyone in the room with me. Lucky you could hold someone's hand!
0 -
musiclovermom: I don't know how you could go through those injections twice
!! I'm very grateful that hubby was there.TCK
0 -
I think it would have hurt worse if I had had someone sympathetic with me! With just the (nice) technician doing the injections I felt like no one wanted to know how much it hurt. Then when I went for the wire placement that was a student observer and I did not want to scare her! So grin and bear it. Everyone was as gentle as possible and that makes a big diff! OTOH, when I had the biopsy I felt like I was just a breast, no human being attached to it.
Who would have thought we could all get through this ordeal? Hooray for us!!!
pam
0 -
I thought the injection for the SNB was painful too but thankfully I had the technician to hold my hand and the doctor was as calming as could be but still hurt like heck.
I've had the same problem as echosalvaje - did great getting range of motion back after the right mastectomy but radiation has caused limitations on range of motion and the tissue tightening of my chest/axilla area. I've been seeing an Osteopathic Manipulative Medicine physician who's been very successful with me working on range of motion and working to "loosen" or manipulate the tissue. I just began sessions with a trainer last night because I need to strengthen these muscles. Even after one session I feel like I have much better movement!
0 -
When I had my SNB injections, the Dr. asked me not to punch him - it would be painful! I was also allowed to have my husband in the room, but it was the technician who held my hand and was very encouraging - I also didn't want to let HER down!!! lol My worst experience was when they "tried" to do the biopsy under mammogram and kept repositioning me and compressing for about an hour before they let me go to ultrasound to get it done. THAT was EXTREMELY painful!! Almost passed out when they told me they needed me to have a mammogram after the wire was placed but it didn't even come close to the pain when they wanted to do the biopsy that way! It is amazing what we are able to go through (and I didn't have to have chemo - can only imaging the emotional and impact of that). Wishing everyone a great day. Be Well All!
0 -
Holy Cow Fmakj! You had to have a mammo after the wire placement! I can't imagine how painful that was!! Did they not have an ultrasound guide? When they did mine, they did it with an ultrasound guide. But the wire placement for me wasn't that painful, of course it was after the SN injections, so anything after that would be a piece of cake.
Pam, I too cannot believe some of the things that we all have had to endure on this journey. Albiet a journey I am sure all of us could have gone without in our lives, but we are in it none the less. You really find strength in yourself you never knew was there, at least I feel I have.
I am toying with the idea of walking the Avon walk. Does anyone know anyone who has done it, or done it themselves? I think it would be something very special to participate in, but I am wondering if emotions would run too high? Any thoughts, comments or ideas??
Wishing you all a joyful and peaceful day!
Hugs
Jen
0 -
I didn't find the SNB injection painful at all. It felt just like a pinch. Mine was done as a separate surgery a month after my lumpectomy so maybe that's why. The pinch I'm referring to was when the technician injected the radioactive stuff. The surgeon also used a blue dye but I was already under when that was done. That said, it hurt a lot when the wire was put in for my first surgery. None of it is fun that's for sure!
Sherri
0 -
Jen, I have a friend in California that is not a BC survivor and she does several Avon walks each year. When I saw her last summer she had logged 5000 miles over the past few years. Says she loves doing it and raising money and awareness. I did the Race for the Cure while in the throes of chemo. It was emotional but empowering too. It's a great venue for "high" emotions!
So I have a question about sun. Now that my husband and I have both finished our cancer battles we've planned a trip to the Yucatan. When people in the BC circles say to stay out of the sun, is that the usual stay out of the sun or am I now more vulnerable to the sun because of treatment? Any thoughts on this? I fully plan on using sunscreen like I normally would in a tropical climate, but do I need to be in the shade all the time? Thanks for your input in advance, Mary
0 -
Sugar77, I'm wondering if the SNB is done differently up here in Canada? I too had a pinch when the radioactive agent was injected; then it felt a bit like a bee sting wearing off for 15 minutes or so, uncomfortable but not at all painful. The dye is injected during surgery.
0 -
echosalvaje,
about staying out of the sun... I walk every day, in Florida in sun. I don't wear sunscreen and usually wear knee length short pants and sleeveless shirt, always wear a hat . I try to go in the early AM before sun is too intense. I do see that my radiated chest skin is covered well. No problems. But during and soon after radiation I noticed I would feel a little faint from the sun and/or heat so had to be careful in that regard. I don't use sunscreen as it really irritates my skin
and I don't perspire as efficiently with an oily coating. Definitely wear a hat or even carry an umbrella if you are going to be in hot sun. There is a huge difference in the intensity of the sun effect in Florida or Texas or Mexico from northern states. Sounds like a fabulous place to vacation!
pam
0 -
I was told to avoid sun/use strong sunscreen while undergoing chemo, as it makes the skin more sensitive to burn. I should think that, being done with chemo, your risk is the same as anyone (so do use a good sunscreen)!
RE: SNB... I had four needle injections and the one closest to my scar from the 3 weeks earlier lumpectomy was the one so painful I cried. Sounds like dye was done before I was out.
Cheers,
Lilah
0 -
Welcome Groundhog and any other newbies! I am new to this site as well. In regards to recliner... I would highly recommend it!!! I am 6 weeks out from my bi-lat mx with TE and 600 cc put in at time of surgery... and I am still sleeping in the recliner. I have tried sleeping in bed a few times, but then had to wake my husband in the middle of the night to help me out of bed. It was just SO uncomfortable. I cannot sleep on my sides while in bed, but do have some mobility in the recliner. I also put a pillow under my legs to help with circulation. I don't know what I would have done without my recliner. My husband has a matching one so we don't have to "fight" over it. LOL. I am hopeful that I will be able to sleep in my bed a whole night again real soon.0
-
Renee and newbies ~
Renee, I agree with you that this site should be changed to allow more than 5 posts in a 24 hour period for newbies. Granted, it's only for the first 40 (maybe 50) posts, but it still is a hindrance, I believe. There has been one occasion that I can think of where I wanted to post something, but had to wait 10 hours until my 24 hour period was up, by that time the topic in the thread had changed so much that I thought what I had to share wasn't as important as it would have been if I had been able to post when I wanted to, so I didn't post.
Meece gave me some great advice... and that is to try get in the 5 posts each day so that I have the freedom to move around freely after that. I wanted to pass this along to any other newbies out there.
Take care and prayers for all of you. Tomorrow is suppose to get up to 35 degrees... it's gonna be a heat wave here.
0 -
I suppose the reason for the 5 post limit must be to keep spammers from flooding the site with commercial posts. But it does punish all of us for the "sins" of a few. At least a newbie can read as many posts as they want and send private messages... I think. Those first 50 posts go really fast in looking back. Some times I am embarrassed at my number of posts. But I do play a game on one of the threads so it is not all pontificating!
pam
0 -
Good evening to everyone, hope all is going well.
Debbie, I had a lumpectomy and it was at least 6 weeks after, before I could sleep in the bed. I just couldn't get comfortable. I am a right sided sleeper and of course it was my right breast that had the cancer in it. I guess it just takes time, you will eventually get back in the bed.
Juannelle
0 -
Well, thank God the surgeon was on top of things! Good for you. Your information just blows my assumptions out of the water though. I have a tumor which was found by chance...and am waiting for the pathology report. I am assuming that I won't need chemo as the surgeon said the nodes looked clean and so did the margins. The tumor itself was 1.5 cm by 2 cm and is mostly invasive ductal carcinoma. Some of it seems to mimmick lobular carcinoma and another section of it seems to be a solid or cribiform DCIS. It is strongly ER postive (100%). I am 58 years old. I was thinking that I for sure will need radiation (I had a lumpectomy and 3 centinal nodes removed) but no chemo. After reading your information...I think I probably am going to need chemo after all. I too live in Canada (in beautiful Victoria, BC). The cancer response is amazing and I've been given a ton of support from our medical system...but wow...chemo? I'm just amazed. Are you still pre-menopausal? I had a partial hysterectomy when I was 32 so still have my ovaries but stopped having periods at age 32. I believe I'm post menopausal as I've gone through all the sweats and flushes and lovely other symptoms over a year or so ago...but...who knows...maybe I'm still pumping out estrogen and don't know it. LOL. When were you told you need chemo? I meet with the surgeon on the 18th of January and we will be discussing my "game plan" at that time...thanks.
0 -
Linda -- Welcome to the site! Who are you responding to?
Lilah
0 -
Wow Ladies it seems we had quite a discussion about SNB and our surgeons either explaining or not explaining things well. LOL! Apparently the SNB must be done a little differently in Canada than it is here in Alabama. All I can say for sure is, no one could go back with me, the Nuclear tech did mine, not the Dr., there was a student in there training and she held my hand while I boo-hooed. I remember the first stick hurt and I commented, but by the second stick I was bawling. I have had a bone marrow aspiration and a thoracentesis and neither of those were as painful as the SNB!!!
Hope all of you ladies are having a great evening!
Renee
0 -
To clarify, I had the wire placed under ultrasound, but they needed mammogram after it was placed. That didn't hurt at all, just a little stinging where the wire went in and out. The SNB was major stinging that it brought tears to my eyes too! I had the blue dye after I was out.
I had a Genetic Consultation today and qualify for yearly MRI and Mammograms. I was refused the MRI in November. Now I just have to wait about 4 months for the results on whether I am BRCA 1 or 2!!
After Radiation, I was told to avoid the sun as everyone should, but to make sure I used a good sunscreen where they radiated.
0 -
Agreed fmakj -- same here. Wire insertion was uncomfortable but bearable. Mammo after was done gently (and is done to help surgeon in OR). SNB three weeks later SUCKED
(Oh did I say that out loud?)Congrats on qualifying for MRI and Mammos every year!
Cheers,
Lilah
0 -
fmakj - may I ask if you have a family history? I've inquired about the BRCA testing myself to the surgeon and both the radiation and medical oncologists and they have all said I don't qualify for the test because I no family history. Did you have to push for it?
Sherri
0 -
Sugar77: I have been referred for genetic testing "consideration" by my onco at Sunnybrook - mainly because of family history: sister diagnosed in 2008 and elderly aunt with BC. I have a big questionnaire to fill out and then I guess I wait to see if I qualify for testing, if so, then I get tested and wait 6 months or so for results. Egads - a lot can happen in that time!
As you may know, there is a fairly high overlap between trip negs and BRCA1 gene carriers. But at the same time, BC, especially in post menopausal women, is not that unusual - so they don't routinely screen.
Here are the Ontario guidelines (scroll to page 2): http://www.lhsc.on.ca/lab/molegen/brca_req.pdf
0 -
Sugar, My Grandmother (paternal) had breast cancer and my onc thought that was enough to warrant the consult. Apparently because there are 3 in my family (Grandmother, her sister and myself), I AM a candidate. There is also a second cousin to me diagnosed with ovarian cancer in her 40's - THAT is a red flag apparently as BC and Ovarian are connected with the same genes. I have to wait 4 months for results, but because of 3 in family, I am eligible for the high risk screening (whether I test positive or not, and my kids too!) - THAT was what I wanted!!! I will be sent forms to send out to the relatives of this second cousin so it can be verified that it was ovarian in her 40's and one for a release on my Grandmothers files. I am still uncomfortable with the "no chemo" decision, but feel much relief knowing that I WILL have an MRI regularly along with the Mammogram. Now I wait and see. What a lot of waiting we do!!
0 -
Luah and fmaj - thanks for the information. It looks like I don't qualify based on known family history as there is none on my mom's side. My dad's side is a mystery because he was an only child and so was his father, and his mother died in her '40s of a congenital heart condition. Therefore there really aren't any women on his side other than me. I'm 45 and premenopausal (...well I was until I started chemo....we'll have to see if it comes back!!) but I'm not under 35, which seems to be one of the cutoffs without a strong history on the link Luah provided.. I sure hope my daughter is checked regularly. She's only 10 right now but I want to ensure she gets monitored very closely when she's older. It was a fluke that this was caught early on me and I don't want to take any chances with her.
A friend of mine had TNBC at 29 and she did get tested but it was probably because of her age. She was negative for both BRCA1 and 2. That was eight years ago and she only gets annual MRIs. She's not had mammograms because they felt given her very young age at diagnosis that it would be too much radiation over her lifetime so they do only MRIs. Good news...she just had this year's a few weeks ago and all came back clear again!!
I have another friend without BC and no family history but because she is of Ashenkazi Jewish descent, she was tested as part of a study at Women's Colllege Hospital. She turned out to be positive for BRCA1.
Sherri
0 -
Sherri -- I was told there are two factors that dictate whether BRCA tests are necessary... (1) family history of BC (in women OR men) and (2) Ashkenazy Jewish descent... in my case there is no history of cancer of any kind in my family but since I AM of Ashkenazy Jewish descent I was tested (and was negative for both). I was told that means only that I'm negative for these particular genes. Meaning: that doesn't mean it isn't genetic... just not a gene they know how to test for. Ah well. I used the results to decide NOT to have a prophy MX on my healthy breast. Had I been positive, I'd have had them both removed (instead of just the sick one).
Cheers,
Lilah
0 -
Lilah
I fit the red flag profile because I was diagnosed before 50 and had a family history.
BUT it is not my Mom or Sister with BC, It was my father's MOM, and her Aunts.
0 -
The breast/ovarian cancer in my family are all on my father's side as well.
0
