TRIPLE POSITIVE GROUP
Comments
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windlass- yes- i dont know if i should go with it or not.........dont like taking tablets
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redinrah: Someone sent me this link on Insulin Potentiation Therapy, which may be relevant to your question. http://www.iptq.com/
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Tonight I had the opportunity to sit with a RO and talk...learned a lot about radiation....
Since I didn't get clear margin on the skin side, they will PURPOSELY "burn" my skin..they put a gel on it until it turns bright pink, then they stop with the gel but continue treatment. He said my breast will turn red/pink, peel, maybe blister, maybe worse.
He also told me there is no way to protect the thyroid when you take radiation. Most women lose thyroid function within 12 months of rads. Some do, some don't. But every woman who has ever had full breast radiation should have her thyroid checked once a year for the rest of her life. Also, the younger you are when you have radiation the greater the odds you will have lung complications..because they tend to take awhile (10 years and more in some cases) to manifest.
The ribs are compromised, and it is not "unusual" for them to thicken and become brittle and break when a woman sneezes, laughs, or coughs...for the rest of her life. (This is probably the one potential SE that is too much for me.)
He also said radiation isn't heat. You could combine all the rads we get in 8 weeks, put it in coffee and it wouldn't raise the temperature one degree. It's about separating hydrogen from oxygen and while it may feel like a "burn," it isn't.
Lots more info...but those are the things I found most interesting.
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TonLee thanks for your answer on the TCH thread re: time from chemo to rads. This info about thyroid and brittle ribs is rather worrisome, I didnt know about them earlier. Which makes me wonder all the more why rads are needed when chemo is systemic. But thanks for sharing this useful info, and best wishes.
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Sam,
I keep forgetting your wife had a lumpectomy....
There are studies that show lumpectomy with rads has a signigicant reduction in recurrence, and that it is about the same as having a MX. Without rads, it jumps though. You can find many of them with Google Scholar.
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TonLee - I think the RO that you talked too was perhaps a bit dramatic! My rad onc has been practicing for 25 years and I think if I remember correctly she has only seen a rib break due to radiation damage 1 or 2 times. I have read here also only a couple of women mention this - so I don't think it is a very frequent problem. Also, the new radiation treatment plans that can be developed using CT scans are much better than the older ones and cause considerably less side tissue damage to the lung, heart and ribs. The thyroid part is a good point but I do not think it is true that 'most women' lost thyroid function 12 months after rads - I just don't think that is so! Perhaps it goes down some but it doesn't stop working. As far as burning the skin - I would seek another rad onc for my treatment! I had a deeper tumor so my issue was different but I cannot see my rad onc taking a scorch and burn approach to treatment there must be a better way.0
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Omaz,
This was an RO that used the equipment I will take Rads from. Many of the women in the room received Rads from the same machine. I don't know what the statistics are, or if he was being dramatic, but several of the women in the room with me experienced cracked ribs over the last five years or so.
Some of them didn't know it until a scan picked it up (though how they could not know is a mystery to me, from what I understand they are painful) but some came in because of the pain and assumed bone mets...ut it was determined it was cracked rib from radiation.
As a point he made...I personally don't care how "rare" it is statistically. I have to consider it against net benefit because it is a possibility.
As far as burning the skin..the new Rads machines are made to deliver treatment to the chest wall not to the skin. (The old method called Cobalt was really tuff on the skin because once the rads hit it, the skin absorbed a good percent of the radiation. Now rads is designed like a bunker busting bomb, to get through the shell (skin) and then disperse. So, when treating skin, they have to put a gel on the skin to "trick" the radiation into thinking the skin starts sooner than it does, so it will penetrate the gel (thinking it is skin) then start diffusing...which will deliver rads to the skin as well as the chest wall)
My tumor margin was less than 1cm from the skin. Probably would have ulcerated in another few months. This RO is retiring so he is not my RO. I have yet to meet with mine. But he trained under this RO so will likely say the same things. Then I will get a second opinion.
I hope my RO will just put gel on the skin where the tumor rested (11 o'clock) and not cook all the skin on the breast. I plan on pushing for this if my second opinion says this is the acceptable course of treatment.
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Omaz,
I looked up the thyroid info...the RO I spoke with said "most" but maybe that has been his experience...in the study linked below it is 20-30%.
Despite their specific functional consequences, radiotherapy-induced thyroid abnormalities remain under-estimated and underreported.....Primary hypothyroidism, the most common radiation-induced thyroid dysfunction, affects 20-30% of patients administered following curative radiotherapy to the neck region, with approximately half of the events occurring within the first 5 years after therapy.
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TonLee - I would suggest getting the second opinion from a doctor at a different facility - I have to say that the observation that several women treated with the same machine have cracked ribs is concerning to me. My rad onc sees this only rarely in her practice. The most important thing in rads is an excellent plan and this depends on the rad team. Also, when using external beam radiation (which is what I had), the skin is definitely affected by radiation. In fact skin care is very important during treatment. Maybe your center has IMRT, I don't know about that treatment.0
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TonLee - radiotherapy to the neck region - how does that translate to breast treatment? Could apply if LN in shoulder were treated, that would be closer to the neck for sure.0
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TonLee I agree with Omaz. Granted your onc(s) might be correct in their approach there might be another approach that is just as good but less damaging. It might be a technique issue. Every case is different but does it really hurt to get a 2nd opinion.0
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Omaz,
I plan on getting a second opinion from a different facility. I have read some of the posts here so am aware of the skin burn issue. I'd rather not burn, but the RO last night said it is the only way to "sterilize" the skin. Maybe my RO, or the subsequent second opinion will differ.
The broken bones didn't occur during Rads, but after...sometimes one, two, or more years out. Not sure if I made that clear. He said rads causes the bones to thicken but become brittle so they are easier to break.
My facility uses the linear accelerator (LINAC) which is external beam radiation.
It delivers a uniform dose of high-energy x ray to the region of the tumor. These x-rays can destroy the cancer cells while sparing the surrounding normal tissue. (Or so the sight says.)
Did yours look like this?
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Omaz,
They treat the lymphs under the clavicle...which exposes the thyroid to rads. In fact, he said for MX with dirty margins and no axilla dissection I would likely get rads from just above the clavicle, over the entire right chest wall, into the axilla under the arm.
But that was just going on my labs...he didn't examine me, and I'm not even sure I'm on board with all that yet. I have a few months to research, get second opinions, and decide.
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TonLee - It's Hubert's cousin! I named my machine Hubert and this one is very similar. It rotates at the back to place the head at different angles for the different tangential fields. I understood that the ribs problem and lung problem could occur much later, but I still think the incidence that rad onc was describing seems high. I knew you would go for another opinion - The idea as I understand rads is to damage the cellular DNA so that cellular replication is impaired unless the DNA is repaired. Normal cells should be able to do this repair well. Cancer cells should not be able to repair the DNA and would presumably have trouble dividing and living after exposure to radiation. I don't think 'burning' per se is an indicator of effective radiation treatment - but I am obviously not an expert. My rad onc expected my skin to be pink, even dark pink, but didn't expect it to 'burn' seriously. In other words, my idea is that you theoretically could effective damage any possible remaining cancer cells in your skin without burning the heck out of it using a really good radiation treatment plan. But I could be wrong.0
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Hi ladies. I was recently diagnosed as triple positive and thought I should join this group. I have so much to read and learn. Sooo many acronyms!
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youngmama sorry you had to join us. Looks like we are the big tumor gals. (part of mine was DCIS but they don't include that part in staging. If they did I think it would have been 6.5cm instead of 5.5. MRI showed 6.5cm)
Anyway the abbreviations can be found here:
http://community.breastcancer.org/forum/62/topic/735716?page=10 -
Omaz,
I don't know either, but intend to find out before I ever start dating Hubert's cousin.
~Just sayin'
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Young mama welcome to the group. This is a great group of very "positive" ladies that will give lots of support.
I asked the RO today about thyroid damage. He said his goal is to radiate with as little collateral damage possible. Showed me my treatment films and where the rads are missing the thyroid.
This is exactly the same machine I am dating. Libraylil0 -
That's good news Libra. I will try and get the same, but from what the RO said last night...I'm fairly discouraged about it.
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Lago, thanks for the link. Looks like our diagnosis are very similiar. They are not really sure of the size of my tumor since I was breastfeeding until the day of my diagnosis, but they estimated it at around 10cm. My MRI is only scheduled for next month.
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Hi, youngmama - welcome to our forum! I can't imagine what it must be like to discover you have breast cancer while nursing a newborn. How devastating! Our prayers are with you.
Before my surgery, my tumor was estimated at one time to be 13 cm. I about fainted. By the time they removed it, it was discovered to be multiple smaller tumors all linked together. It sure felt great to get them out. Have you had surgery yet? Are you doing neoadjuvant (pre-surgery) chemo?
Please feel free to ask us any questions. There are no dumb questions. We've all had to ask them and learn our way through this journey one small bit at a time. The good news is that it gets easier to cope over time. I've known about my cancer about a month longer than you have (I "knew" around Christmas time), and it's really only been this last month I've calmed down. Not that I don't have panicked days, but it's getting less like a constant waking nightmare and more like a dull worry in the background.
Please let us know how we can help.
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Okay, ladies - today is the big day. I start A/C chemo at 1:00 PM Eastern. Please send prayers!
I have fasted on nothing but water and herbal tea since Sunday night, so I'll be in a good position to report on whether that protects the healthy part of my body from drugs. I have my fingers crossed and my prayers said that I will sail through my first chemo treatment comfortably and nausea-free.
I have to admit the fasting has been HARD. Really, really, hard. But it's amazing how motivating cancer is to get you to do hard things (surgery, port installation, radical diet change, exercise, and now fasting). Heck, I'd walk through a volcano if it meant getting/staying well!
I am ALSO doing Penguin Cold Caps, and have my Igloo coolers filled with dry ice ready to pack with the caps this morning. I plan to keep my hair and my health through this process. But I also plan to blast the h*ll out of those nasty little cancer boogers.
Love to all!
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good luck windlass. For most people the 1st chemo ends up being pretty uneventful. You're scared shitless waiting for something to happend…and nothing does. The only thing I felt was the benadryl. Nurse told me when she was giving it and I laughed and said "too late I just felt it" I got a little light headed with benadryl.
Youngmamma 10cm! How big was your child when you gave birth. You grow big ones.
When are they planning on taking that big sucker out?0 -
Windlass-agree with Lago my #1 was pretty anti-climatic. Here's hoping #2 gies te same today!! I am doing the elasto gel caps. Had alot of shedding on day #21 but slowed since. It's a process but worth it!
Youngmamma-welcome! This is a great place to learn tons of helpful info!!!! I had just turned 36 at dx and while my daughter is 17, this disease is a crazy place to be at my age (or any age for that matter).0 -
Good luck windlass and kriskat. I hope your treatments go smoothly and are uneventful Just remember to take your nausea meds at home to fend it off. Especially on that first day. I found that I felt okay the frst day of treatment and then gradually got more lethargic, felt pretty normal on day 3, and did too much normal stuff, and then crashed again on day 4. Just make a pact with yourself to take it easy and listen to your body.
welcome to our group youngmamma. How awful to find out about BC while nursing your baby. They won't really know the size of your tumor until surgery (they predicted mine was 1 cm on mammogram, 4 mm on ultrasound, 2 cm on MRI and it ended up being 9mm. Are you having suregery first or adjuvent chemo?
lago - were you surprised that you didn't have chemo before surgery. I had read that was common with big tumors...
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I asked my BS about that and he said that was for bigger tumors. Then he ordered all the CT scans/bone scan to make sure it wasn't any where else. He said if it had spread then I would be doing chemo first.
He isn't to keen on doing chemo first because he feels they don't know how the cancer shrinks. It doesn't just shrink but can be more like Swiss cheese and/or cells might be left behind as the mass shrinks. I think this thought was critical because he was concerned about a micro invasion in my node… and really wanted to find out if it was in my nodes. Assuming chemo worked and I had a micro invasion in my nodes we would have never known for sure. I am very comfortable with the decision… even more now than before now that I know more.
At least that's the way I understood it at the time. I was so scared before surgery that I'm not sure I processed everything accurately.
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lago - good point about the nodes - and glad you didn't have invasion there. I know for me, I really liked having my surgery behind me and having all known cancer removed asap.
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Windlass,
GOOD LUCK TODAY!!
I'm curious. How will you be able to tell if good cells are left alone? If fasting protects good cells, does that include rapidly dividing good cells like in the GI Tract? The hair?
I agree with the others. The first TX is fairly uneventful and probably won't be a good measure of the fasting. For me it wasn't until #4 that I actually felt it dragging on my energy.
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Welcome youngmama.
I hope we can be supportive and useful in your BC journey.
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Good luck windlass and kriskat!!! I hadn't heard about the fasting!! That's very interesting. I wish I had known while I was in treatment last year!!
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