Stage 2 Sisters Club
Comments
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NisaVilla - I didn't have rads after my double mastectomy because I was node negative. And I'm triple negative, too. Thanks for the well wishes!
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Hi
I had a double mx and a micro invasion ( 2mm of cancer) so a very small amount of cancer in a lymph node . I had a choice of doing rads as there was only a 1 to 3 percent difference if I did them. I figured that because I am only 42 I wanted to give this beast everything I could. I did 16 rounds of rads and it was fine. I did burn and found the worst was actually after it was over. I had a few days where I could not wear my prostheses. Now I am still peeling but am totally fine.0 -
I had a uni-mastectomy, and 2 nodes compromised. I had no rads and no chemo.
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Thanks for feedback re: rads. An RO offered 38 rads of chest wall to cover a remote chance of BC returning locally. I was listening until I freaked out when he said there would be a little bit of damage to the lungs, and will try hard to stay away from the heart. Do rads really permanently damage your other organs? Never heard that before!0 -
Nissa, I was told it is very rare for the lungs or heart to be seriously damaged. But as with everything in medicine they have to warn us about potential SEs. Do you trust your RO? Is s/he from a reputable, hopefully NCI, hospital? Where and from whom you get treatment is incredibly important. (((HUGS)))0 -
Hi Yorliemom - Yes, reputable RO. I think you are right about lungs and heart not getting "seriously damaged" but I did not know that radiationn causes permanent scaring on just about anything it touches. Started reading and see that delayed SEs (eg. damage to lungs and heart) seem more common that I would have imagined. Here is one example where they talk about "unavoidable damage" and drugs that can help such damage.
http://www.sciencedaily.com/releases/2013/04/130421074513.htm
Why are most treatment choices so difficult to make?!0 -
Nisa, if you absolutely don't want rads, maybe you should talk to your surgeon about a mastectomy. I forgot what your particulars are, but rads are used with lumpectomies to make sure all the stray cells are zapped, which then gives a survival rate equivalent to mastectomy. Thanks for the link. I will check it out. I finished my rads over a year ago and don't detect any damage. Of course there could be problems I am not aware of.0 -
You did have a mastectomy, didn't you Nisa? If so, ask why, with negative nodes it is being recommended (because it usually isn't with negative nodes) and make sure the answers make sense to you (sadly, there is always a 'remote chance' no matter what you do). I had radiation with no short or long term bad effects at all, but, of course, you don't want to have radiation for no good reason!!0 -
Rads will be done with mastectomy for smaller margins to skin or chest wall, as well as positive nodes.0 -
Aha!0 -
Hi Friends - thanks for feedback. The reason for the recommendation was multicentric cancer that occupied most of a not-big breast. A bunch of mammograms did not detect that big beast that appeared to have been there for an estimated 5 years. Anyway, RO said most chances for local or regional recurrences were likely already taken care of by chemo, but if I wanted even extra protection for a "remote chance", then the recommendation is rads.
I think I am comfortable leaving things the way they are.
I hope those of you affected by bad weather are safe at home with family.0 -
I had six weeks of radiation after a lumpectomy and T/C chemo, but to my knowledge the radiation didn't hit my higher lymph nodes. Two out of the two nodes that were removed had micro invasions. My hospital has a policy of only taking two nodes as it doesn't feel taking more changes outcomes and can cause problems such as lymphadema. I will always wonder if more of my nodes had/have micro invaders in them. It would have been reassuring to know if node #3 was clear. I'd hoped radiation would have gotten all of my nodes, but I have been told it did not.0 -
Hortense - I relate to the "will always wonder" as I too wish onco surgeon had looked beyond the first 3 nodes. Every time I hear multicentric disease behaves in weird ways , I think...cancer in the back nodes!! On the other hand, I am 5-weeks post-chemo and my nails are now falling off, ugh! If T/C can do this much delayed damage, my hope is that it killed any floating tumor cells hiding out. I hope it did the same for yours, if any0 -
hortense - I think you would have needed axillary-specific rads to cover that area - partial and whole breast rads I don't think can hit the axilla, was this offered to you as a possible treatment or were your docs confident that chemo was all that was required? I asked several times about rads, as I had a positive sentinel with a micromet (actually IST) but a much larger node further up - which is somewhat unusual. I was told by both BS and MO that I did not need rads, as both docs insisted I have ALND due to Her2+ aggressiveness. My BS is one of the pioneers of SNB, so I know he is not keen on removing more nodes than necessary if it can be avoided. It will always be a question mark for me.0 -
NisaVilla - I am so sorry to hear about your nails. Someone should have told you to ice them during Taxotere. I found out about it in a chemo thread on here. In France, and I hear in Canada, ice mittens are given to women to prevent such damage. I used crushed ice or frozen peas in ziploc bags and put my fingers into them. I also put bags over my toes. My surgeon still looks at my fingers in wonder and comments about my lack of damage. Each time I remind her that "I iced".
I know that my hospital is doing a clinical trial on icing and I hope the results will be positive, because if so, when they publish the results icing would be come the norm. I should explain that it wouldn't let me into the trial, and wouldn't let me use cold caps to save my hair, so I went to a nearby hospital for chemo where I was allowed to do both, then returned for radiation. It has since changed its policy and is allowing both, although it is not yet telling woman about either.
SpecialK - My doctors at both top hospitals in NYC felt chemo would do it. I definitely asked about it, but was told it wasn't necessary. I hope they were right. The hospital I went to for surgery also does not believe in removing more nodes than necessary which is why only two were taken.
Hope you both are doing well.0 -
SpecialK - It would be interesting to know what your BS is recommending now. It seems to me that there have been several studies published since 2010 that show the same benefit and less LE with radiation instead of an AND for women with a positive nodes. NissaVilla did not have an AND, still with a mastectomy and negative nodes, I'm surprised that radiation is being recommended. The one thing about BC treatment is we each have to make our decisions with the best information available at the time but treatment evolves every year. I'm trying to embrace not looking back!0 -
I just found this thread and glad to be here. I haven't read every post but hope to catch up over time.0
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too much - I have discussed this with him since at subsequent appointments. Not removing the nodes would have been akin to leaving a Her2+ breast lump, doing chemo and rads, and never doing surgery. My BS maintains a 25 year database on every patient he has ever treated - he felt there would have been about a 60% chance of complete response. He is a very progressive surgeon, and I was being treated as axilla rads in lieu of ALND was becoming more frequently used, but I'm pretty sure he would advise the same path today. I will see him at a social function next weekend so I will ask him!0 -
In Australia I used iced mittens and ice socks as standard care. We were also told to paint our toe and fingernails with black nail polish to stop light absorption. I had no nail issues.0 -
So wish I would have also known about the nail thing from the taxol but they are almost grown out now last treatment was 8/12. Just had my BMX & placed TE's they were able to fill them 300cc so over 1/2 there on the fills... Filling to 550cc. Very sore but this is nothing compared to Chemo and I feel like it's the light at the end of the tunnel. I am so thankful for all of you sharing and caring it does make a difference when we stick together. I had 1 lymph node affected and decided not to do radiation. I did a really strong chemo regimen and the bmx and rads would have only changed the percentage by 2%. Since I am 45 I wanted to keep something for "IF" there was a recurrence. I am struggling a bit with some survivors guilt. Both my cousins died from breast cancer... at 36 (inflammatory) and 42 (triple negative) They are my inspiration and my heros
they left journals behind which has helped immensely. Well enough rambling for now. Prayers to all much love and respect for all you/we and our families go through.... Have a blessed Sunday y'all0 -
kyliet - Luckily I knew about icing, so did it, but I didn't hear about the dark polish until afterwards. It would be so nice if all of us were told about both before starting chemo. Sounds like Australia is very progressive!
clwhetstone - I am very sorry to hear about your cousins and that you are struggling with survivor guilt. It must be difficult. They were so terribly young. BC must run strongly in your family. Have you had the Braca test? My OBGYN is speaking to every one of his patients and having them fill out a three page questionnaire to see if they should be tested for the Braca gene. It runs in his family and his sister is battling BC now.0 -
I was tested and came back negative for the Gene. Sadly those were the only breast cancer statistics. My grandfathers mom died from breast cancer and his dad died from colon cancer. My paternal grandfather and his 3 sisters all died from cancer as well. My moms sister and brother have also had cancer that they have survived.0 -
My older brother died of non-melanoma skin cancer. My younger brother had oral cancer (20 surgery the first time and 15 hour corrective surgery). Now he has bladder cancer. Both are probably due to Agent Orange.
There are many causes of cancer but I think one of the major ones is environmental.0 -
NotSelf - Welcome! Glad you found us. I never tire of saying many on us appreciate when people who are years post- treatment hang out with us "newbies." How is your life 5 years post BC? Sorry to hear about your brothers.
Hortense - It would have been good to know about icing nails! T/C has taken my pretty hair and my pretty nails, and gave me neuropathy and edema. Why couldn't have taken my wrinkles and given me 2 more inches in height instead? LoL.
Clwhestone - Sorry about so much cancer in your family tree. My maternal side is also filled with cancer stories. Glad to ear about your nails... Miss mine but not as much as I miss my hair. Do you have any hair now? I am starting a light 5-o'clock shadow, yeah!
SpecialK and Ruth - hi!
Hugs to all0 -
nisa - hi!0 -
Hi....hope everyone had a good weekend. I would insert a smiley face but it seems as though the emotion bar is missing with the latest 'upgrade'.0 -
2a here. Triple positive, grade three. Three years as of the 13th of this month and doing great!0 -
It's been 6 years since my surgery. The good news is I have been off of Arimidex for 6 months and some of the side effects are disappearing. My hair has stopped falling out. I am starting to get some muscle tone back. I finally figured out my cell phone. Things are looking up.
I'll get the results of my bone density scan on Wednesday. Arimidex had given me osteoporosis but after finally taking the right combination of calcium, magnesium and Vitamin D3, one of my vertebrae has improved to osteopenia and the rest of my spine has also improved slightly. If things look good this year, I'll know the improvement was more than a machine error.
I still haven't lost the weight I gained, but perhaps that will come as well.
Oh yes, the pain I had from the drug has completely disappeared.0 -
Nisa
I agree I miss my hair as well. I had a lot of it. I donated 17 inches to locks for love when I was diagnosed and it was still shoulder length. When i started taxol it was patchy and now it's starting to really fill in thick wise. Another couple weeks and you won't see scalp I look like jamie lee curtis with the salt and pepper thing going on. Hoping when I start the tamoxifen on the 14th hair loss won't be one of the SE's.
Have a great day everyone0 -
Good Morning all. Was reading all the posts. It has been a busy weekend. MrsJDB is doing well after her last chemo, well enough to enjoy dinner Saturday night and some excursions to the mall. The one issue she has is a nasty cough which she cant shake. I do remember reading that Taxol will cause you to have a nasal drip??? Which seems to be the cause of her cough. Her nails are holding up ok. She put some sort of stuff on them which makes them stronger and dark nail polish. She told me they are brittle but holding up. One more to go! Reading about Rads on the posts. With us its a no brainer. With 3 nodes and LVI it will give us 10 percent according to RO. Its also on her left side so no heart involvement. Have a great week!0
