Thanks Dr Liz for doing this utube. You are a mine of trustworthy, medical information and an excellent communicator. We all appreciate what you are doing.
I had terrible throat pain during radiation. Had difficulty swallowing & could only eat soft foods. And now (8 months later) I find that speaking a lot, or speaking somewhat loudly leads to discomfort & pain in my throat. It is dismissed by the treating doctor. And I think they do not necessarily understand that it is worrying and sore when over-exerting the voice. I do understand that in the long run & compared to all the other side-effects it is not really an area that get much, if any, attention. But when you are in a profession where you need to be able to talk, it really is a problem. Thank you for a very informative channel with real, honest answers & advice. And thank you for your openness & sharing your journey. ❤
Dear Doctor, You presented answers to the questions that I didn't even know to ask. In plain language and with nothing hidden. " What to expect" is the best part of your presentation. When I finally started to notice the changes in my body, I recalled that you had already given me a heads-up. Bless you, Doctor.
I finished radiotherapy 5 days ago, and I would like to add a few points: I was told that the effects take 10-14 days to develop, and would get worse before they got better. I did not want to have a tattoo, and was advised they are NOT compulsory, so opted for marks made with a pen, which will fade. I did the shoulder exercises diligently twice a day after a lumpectomy and removal of 3 lymph nodes(the latter of which turned out to be perfectly normal with no cancer in). I still got a seroma, sepsis and cording. Even though I had difficulty moving my arm on the operated side and adhesive capsulitis on the other side, I could still have the treatment with one arm down. Best of luck to anyone else going through this cancer nightmare❤
Thank you Dr Liz. I am 2 years post lumpectomy but still find your videos extremely helpful. I did develop lymphedema a year later and wear a compression garment from dawn to bedtime and go to a lymphedema therapist every 2 weeks in the summer when the high heat (California) causes more swelling. I want to emphasize to others please, please keep up with the life long PT for arm and shoulder as painful as it may be in the beginning. I stuck with it and even when the lymphedema developed have retained full motion.
Thank you for sharing this with us. I wish there was a way of predicting who would get lymphoedema after surgery and radiotherapy, and I wish there was something we could do to prevent it
@ hi Elaine. Yes the sleeve is worn every day and I will do that forever. It is a chronic condition. When I get up in the morning I do a set of exercises geared to getting the lymph fluid to “wake up” then I perform manual self lymphatic drainage (a form of massage), and then I put on my sleeve. It comes off when I get into bed at night. Every day. I don’t need a night sleeve, yet. I also work cream (CeraVe/E45 or similar) into the skin on the affected arm several times a week. It is supposed to be a newly laundered sleeve every day. I am retired now so only shower every other day (except when it is really hot in the summer) so put a fresh sleeve on after my shower so I get two days from a sleeve. I live in California and my medical insurance covers me to have 2 new sleeves every 6 months (no additional cost).
Thank you Dr Liz, this is such an amazing resource you have provided and it's helped awnser some of my questions and will help me be better informed about what questions I need to ask when I meet with radiotherapy once I finish chemo. Thank you so much
Thank you! I had my lumpectomy 5 weeks ago and will start radiation (3 weeks, 5 days/week) in January. My overall experience at St. Bartholomew's Hospital has been excellent and all doctors and medical staff have been compassionate and very informative. Nevertheless, your video provides more assurance to me of what to expect. I am a little worried about reduced white blood cells as a side effect, as I have experienced this on and off throughout my life.
I am surprised that you do not mention tiredness. I thought this was an established side effect. Ditto I still have sore skin which makes my bra uncomfortable 6 months post treatment as have several of my friends
Thankyou for this information. I was wondering about the red dots on my skin you say are blood vessels from the radiation therapy. That did ease my mind for sure because I was worried about them being skin cancer.❤❤😊😊👍
I'm really scared of all of these things. All through my journey, every "rare" outcome seems to be happening. My mother also ended up with a shrunken fibrotic breast after radiation, so I am concerned there may be something hereditary involved.
Thank you Liz 🤩. I had chemotherapy for grade 3 triple negative BC and I've had a lumpectomy. I'm now on Capecitabine awaiting radiotherapy. The video was really useful to understand the next stage. Would you think it's better to have a break in the capecitabine to have radio therapy as soon as possible or wait until I finish 6 months of capecitabine? My lumpectomy was in August and I started capecitabine in September. I’ve got my first appointment with the radiotherapy consultant at the end of November.
I had a bilateral mastectomy with positive cancer in sentinel lymph node. My insurance BCBS FEDERAL denied radiation treatment even though my oncologist recommended it. I also take Femora for 5-7 years.
It took me ten months after surgery to do radiation. I am worried because I do not know if waiting so long it is effective. Why it took so long? Well after doing mastectomy private I just could not afford radiation, the cost for it privately was exorbitant so I have to go through the government passionate care program.This took quite a while .
Dr Liz, you really need to be including stats, both absolute and relative results. Without those numbers to educate patients, they have no idea what "rare" or "unlikely" means... plus maintaining a lack of knowledge is one more way MDs control their pts behavior via a paternalistic hierarchy.
In my next book I go into detail about absolute and relative risk, NNT etc. in a general video I can’t give those stats as every persons risk will be different
Deep inspiration breath hold is something that does need covering. It is very common and often causes women to become tense. I know you can’t do everything in a short video but it is worth stressing that practice at home is needed before your first session.
Thanks for wonderful information. You mentioned dose of radiotherapy as 40 grey divided into 15 fractions. What is radiotherapy dose for say five boost fractions?
Yes you may have tiredness as I did for a short while because I only had 10 treatments to my spine due to a tumor causing spinal cord compression from re occurance of Lobular Breast cancer to bone. 😢
Yes. I am 2 years post radiotherapy (here in the US we say radiation). I can still suddenly develop severe fatigue to the point that I can hardly climb the stairs. Far more frequent in the first 12 months, getting less and less now.
FOR US PEOPLE ONLY: I don't know if this affects radiotherapy or not, but some of us might have been exposed to radiation as children and didn't even know it. In the 1950s, radiation dust from Nevada nuclear testing sites floated over the middle of the US--going east--and settled on grass. It is thought that cows ate the grass, so milk from local dairies might have given children some radiation exposure. The risk of thyroid cancer is higher in these kids, especially for those who were very young. There are articles about this, and.a listing of affected counties by state. For example, my county in southeast Kansas was involved. I don't know if this has any bearing on getting radiation now. This really is a "thing" and not just a conspiracy theory. The National Institutes of Health has info about it. For some of us, this may be important to tell a radiologist before treatment. If anybody has any info about this, you can let us know.
I wish I had this 5 years ago!! Thank you. Can you talk about angio sarcoma? My sister died from it in 2016. She had a lifetime of cancers... 3 different times. Breast (35 yrs), labial (late 40's) and then the angio sarcoma (60ish) She died at 63. I was diagnosed in Feb 2020 with Hr pos / Her 2 neg in my left breast. I had a mastectomy and radiotherapy. I had lymph edema at first... never bad... but it seems to have settled down though I still use my compression arm band and gauntlet. They said I didn't need chemo. I have been taking Letrazole since Fall 2020. They say that angio sarcoma is rare .. but when I was waiting for one of my appts I met a lady who was diagnosed with this which, of course, frightened me. Can you elaborate please. Is it known to be hereditary?
Love your explainers! I completed 25 rounds of proton therapy this summer including on lymph nodes in the neck. My throat is still irritated, especially when I talk a lot in a day. Is there anything I can do to promote more healing in my throat?
I am age 58 have stage 3 HER 2 positive ER+ IDC with 2 lymphnodes invovled for which I am getting 6 rounds of TCHP [ starting this Thursday, 11-14] If I have a "complete response" & it is no longer in my lymphnodes, is there a chance I would not need radiotherapy? After surgery I will continure doing 12 months of "targeted therapy" (*I believe this is herceptin). Wouldn't that nixx any micro cells floating around? I am extremely resistant to these goons irradiating me. You can only do radiotherapy once right? So why not wait? What if I save it as my ace in my pocket for if I have a recurrence?...
had 15 sessions of radiotherapy to breast and collarbone. It was fine. The worst thing was having to go to hospital every day but the treatment itself was easy. They give you cream to use to soothe slight redness.
My implant after my mastectomy was ruined . Just a round hard ball now which doesn't move and a deep crater under my arm with having twice lymph node surgery . Small price to pay knowing at least the cancer has been taking away .
Hi Dr Liz I have stage 2b breast cancer and I’ve done axillary dissection for two positive sentinel nodes. One with extracapsular invasion. Would you advise for axillary radiotherapy for my case? Thanks
I had my mastectomy and sentinel biopsy mid June, all 3 nodes removed had macromets. I started chemo in July, have one more round then full axillary clearance in December. THEN radiotherapy. It feels like overkill to me, if I have the chemo doesn't that kill wandering cells? Surgery chemo AND rads feels like way too much and a guarantee of lymphedema or future side effects.
@@Elaine-w2sI suspect they mean an axillary dissection of all lymph nodes in the armpit. This is usually a second surgery. I have read that there is some thinking that the full axillary surgery may not be necessary since you are doing radiotherapy. I am not a doctor. This is just an article I read, and my surgeon also mentioned it. She is having me meet with the radiologist and see what he suggests.
@@Elaine-w2s I had bilateral mastectomies, but I had 3 involved lymph nodes. This is why I am having a consult with a radiologist. The breast cancers I have (I have two kinds!) are both hormone receptor positive. They have a low oncotype score , so chemo would not be that effective. However, aromatase inhibitors (like Letrozole or Anestrazole) could be effective at stopping cancer from coming back. The real question for me is whether to do any full axillary lymph node removal plus radiation or just do radiation alone. The doctors are moving away from full lymph node removal because it increases the chances of lymphedema in the arm. This is hard to treat and can be a serious, chronic problem. I also have another issue because I had some radiation exposure as a baby--when the radioactive dust from the Nevada nuclear test sites floated east in the US. I was in one of the states affected. It may not have been much radiation, but I did drink milk from a local dairy in which the cows would have eaten grass with this dust on it. Hopefully it was not enough to cause a problem, but you just don't know. Radiation is very scary.
@ oh so if you have positive lymph nodes it’s ok not to remove it but just do radiation instead? that would be nice to prevent lymphedema. What do you mean you have two kinds? is it ductal and lobular?
Everything done in cancer treatment has unpleasant side effects on the body. From tablet to other treatments. It is best if you avoid what she mentions. Thank you for the knowledge. behind radiotherapy.
I agree. At 68, I have had a bilateral mastectomy for invasive lobular and invasive ductal. Two positive lymph nodes and one with isolated tumor cells. I will probably be on an aromatase inhibitor and 22% of people stop those because of side effects. At my age and with no dependents, I am leaning towards just taking those AIs (if I can tolerate them) and just enjoying however much life I have left. This choice is not for everyone. Some people take the aromatase inhibitors and have no problem. Maybe I will be fortunate to be in that group. Only bad choices apparently.
Yes. Breast cancer used to be a death sentence, now it has been commuted to a life sentence. Your life is, on average, shortened; and your quality of life destroyed. I am 66 and had surgery in October for stage 2 breast cancer, grade 3, and very Estrogen sensitive (8 out of 8). I am unmarried, no kids, & live alone. Both parents are dead. So I was thinking of refusing radiation therapy, and 5-10 years of AI (the taking of which, besides many other bad side effects, is known to reduce bone density and increase the likelihood of fractures). Luckily, I don’t need chemo because the tumour was small (8mm, with a 28 mm spread) and, though invasive, had not spread to my lymph nodes. The main thing that’s stopping me from refusing further treatment is the worry of recurrence of the cancer. The nurses say that “some” women don’t have any problems with AI. But they can’t tell me what percentage “some” is. I mean, is it 1% or 50%? It makes a big difference. The “Predict” internet tool is a big help, as far as it goes; but it would be better if it could predict recurrence as well as survival.
@pmw3839 I heard that 66 percent of people taking AIs have some side effects and 22 percent stop them. Some people can deal with side effects and some can't. There are lots of YT videos on how to reduce the side effects--like exercising for joint pain. I may take them and see what happens. I can always stop them or see if the dose can be reduced or taken every other day. My real question now is radiation. I have thyroid problems and some difficulty swallowing, so if they mess this up, my life could get a lot worse. I am meeting with the radiologist but may just skip it. It sounds like this disease is going to get me anyway. At 68, if I could get 5 decent years, I would be happy. Very sad to make these decisions. ,but the medicine is not yet advanced enough to help much. The next generation of women, hopefully will be better.
@@cherfromtn8225 I am going back and forth regarding the radiation too (though I haven’t got a thyroid problem). Once it is done, it can’t be undone. I feel like I have had chronic fatigue for over a decade, and all these treatments have fatigue as a side effect. I dread to think what that will mean for me. But then again, without it, there is supposed to be a very substantial increase to the probability of recurrence (though they can’t give me personalised percentage figures).
Thanks Dr Liz for doing this utube. You are a mine of trustworthy, medical information and an excellent communicator. We all appreciate what you are doing.
Thank you so much. Although I hate that people get breast cancer and need my videos
I had terrible throat pain during radiation. Had difficulty swallowing & could only eat soft foods. And now (8 months later) I find that speaking a lot, or speaking somewhat loudly leads to discomfort & pain in my throat. It is dismissed by the treating doctor. And I think they do not necessarily understand that it is worrying and sore when over-exerting the voice. I do understand that in the long run & compared to all the other side-effects it is not really an area that get much, if any, attention. But when you are in a profession where you need to be able to talk, it really is a problem. Thank you for a very informative channel with real, honest answers & advice. And thank you for your openness & sharing your journey. ❤
Thank you so much. I have been diagnosed with breadt cancer 3 days ago.
I'm so sorry you've joined the cancer club. I hope your treatment goes smoothly
Thank you so much DR LIZ ❤
You are so welcome!
Dear Doctor, You presented answers to the questions that I didn't even know to ask. In plain language and with nothing hidden. " What to expect" is the best part of your presentation. When I finally started to notice the changes in my body, I recalled that you had already given me a heads-up. Bless you, Doctor.
THANK YOU
Thank you Dr Liz.
You are the Best Dr Liz. I love all your videos. Thank you 🙏
I finished radiotherapy 5 days ago, and I would like to add a few points:
I was told that the effects take 10-14 days to develop, and would get worse before they got better.
I did not want to have a tattoo, and was advised they are NOT compulsory, so opted for marks made with a pen, which will fade.
I did the shoulder exercises diligently twice a day after a lumpectomy and removal of 3 lymph nodes(the latter of which turned out to be perfectly normal with no cancer in). I still got a seroma, sepsis and cording. Even though I had difficulty moving my arm on the operated side and adhesive capsulitis on the other side, I could still have the treatment with one arm down.
Best of luck to anyone else going through this cancer nightmare❤
thank you for sharing this with us
Thank you for being such a great source of trusted information- I've watched all your videos and listened to all your podcasts!
Thank you Dr Liz. I am 2 years post lumpectomy but still find your videos extremely helpful. I did develop lymphedema a year later and wear a compression garment from dawn to bedtime and go to a lymphedema therapist every 2 weeks in the summer when the high heat (California) causes more swelling. I want to emphasize to others please, please keep up with the life long PT for arm and shoulder as painful as it may be in the beginning. I stuck with it and even when the lymphedema developed have retained full motion.
Thank you for sharing this with us. I wish there was a way of predicting who would get lymphoedema after surgery and radiotherapy, and I wish there was something we could do to prevent it
do you have to wear the compression daily?
@ hi Elaine. Yes the sleeve is worn every day and I will do that forever. It is a chronic condition. When I get up in the morning I do a set of exercises geared to getting the lymph fluid to “wake up” then I perform manual self lymphatic drainage (a form of massage), and then I put on my sleeve. It comes off when I get into bed at night. Every day. I don’t need a night sleeve, yet. I also work cream (CeraVe/E45 or similar) into the skin on the affected arm several times a week. It is supposed to be a newly laundered sleeve every day. I am retired now so only shower every other day (except when it is really hot in the summer) so put a fresh sleeve on after my shower so I get two days from a sleeve. I live in California and my medical insurance covers me to have 2 new sleeves every 6 months (no additional cost).
@ thanks a lot for the info. It can be hard to do if you’re working.:(
Thank you Dr Liz, this is such an amazing resource you have provided and it's helped awnser some of my questions and will help me be better informed about what questions I need to ask when I meet with radiotherapy once I finish chemo. Thank you so much
Thank you so much for letting me know, but im sorry you needed to watch it x
Thank you Doctor.
Thank you!🙏
Thank you! I had my lumpectomy 5 weeks ago and will start radiation (3 weeks, 5 days/week) in January. My overall experience at St. Bartholomew's Hospital has been excellent and all doctors and medical staff have been compassionate and very informative. Nevertheless, your video provides more assurance to me of what to expect. I am a little worried about reduced white blood cells as a side effect, as I have experienced this on and off throughout my life.
I am surprised that you do not mention tiredness. I thought this was an established side effect. Ditto I still have sore skin which makes my bra uncomfortable 6 months post treatment as have several of my friends
I was exhausted after every session. Everyone I spoke to in my support group have said the same thing.
you are right, tiredness is a side effect that I forgot to mention - I can't believe I missed it as I suffered terribly with it
😍THANK YOU
THANK YOU THANK YOU …. Dr Liz if you only knew how much this information helped my restless mind, I can’t thank you enough!!! ❤ forever.
Thank u ❤
Thankyou for this information. I was wondering about the red dots on my skin you say are blood vessels from the radiation therapy. That did ease my mind for sure because I was worried about them being skin cancer.❤❤😊😊👍
They are very common - often seen in the skin of heavy drinkers too
I'm really scared of all of these things. All through my journey, every "rare" outcome seems to be happening. My mother also ended up with a shrunken fibrotic breast after radiation, so I am concerned there may be something hereditary involved.
I was just diagnosed and this sounds awful 😢😢 I'm even more scared after watching this video
Thank you Liz 🤩. I had chemotherapy for grade 3 triple negative BC and I've had a lumpectomy. I'm now on Capecitabine awaiting radiotherapy. The video was really useful to understand the next stage. Would you think it's better to have a break in the capecitabine to have radio therapy as soon as possible or wait until I finish 6 months of capecitabine? My lumpectomy was in August and I started capecitabine in September. I’ve got my first appointment with the radiotherapy consultant at the end of November.
I’m not an oncologist so I would ask your doctor. They will know what is right for you
Well I guess I’m skipping radiation. I just got sick to my stomach with all the side effects. I’ll roll the dice. 🎲
Refer to Prof Valter Longo's research on 72 hours of fasting prior to radiation.
I had a bilateral mastectomy with positive cancer in sentinel lymph node. My insurance BCBS FEDERAL denied radiation treatment even though my oncologist recommended it. I also take Femora for 5-7 years.
It took me ten months after surgery to do radiation. I am worried because I do not know if waiting so long it is effective. Why it took so long? Well after doing mastectomy private I just could not afford radiation, the cost for it privately was exorbitant so I have to go through the government passionate care program.This took quite a while .
Dr Liz, you really need to be including stats, both absolute and relative results. Without those numbers to educate patients, they have no idea what "rare" or "unlikely" means... plus maintaining a lack of knowledge is one more way MDs control their pts behavior via a paternalistic hierarchy.
In my next book I go into detail about absolute and relative risk, NNT etc. in a general video I can’t give those stats as every persons risk will be different
Deep inspiration breath hold is something that does need covering. It is very common and often causes women to become tense. I know you can’t do everything in a short video but it is worth stressing that practice at home is needed before your first session.
Well said!
Thank you for this practical information. It’s helpful as I face the process. PS. That vase behind you is kinda distracting LOL!
Thanks for wonderful information. You mentioned dose of radiotherapy as 40 grey divided into 15 fractions. What is radiotherapy dose for say five boost fractions?
Thank you Liz. Is it normal to experience bouts of tiredness? I'm 6months post radiotherapy.
Yes I was so exhausted for 9 mo after during I couldn't stay aeake
Yes you may have tiredness as I did for a short while because I only had 10 treatments to my spine due to a tumor causing spinal cord compression from re occurance of Lobular Breast cancer to bone. 😢
Yes. I am 2 years post radiotherapy (here in the US we say radiation). I can still suddenly develop severe fatigue to the point that I can hardly climb the stairs. Far more frequent in the first 12 months, getting less and less now.
Yes, absolutely. I forgot to say this in the video. Fatigue can kick in and last for 6-12 months
How does Proton Therapy compare? I am going next week for a Proton Therapy Consultation to compare this to Radiotherapy for my BC.
FOR US PEOPLE ONLY: I don't know if this affects radiotherapy or not, but some of us might have been exposed to radiation as children and didn't even know it. In the 1950s, radiation dust from Nevada nuclear testing sites floated over the middle of the US--going east--and settled on grass. It is thought that cows ate the grass, so milk from local dairies might have given children some radiation exposure.
The risk of thyroid cancer is higher in these kids, especially for those who were very young. There are articles about this, and.a listing of affected counties by state.
For example, my county in southeast Kansas was involved.
I don't know if this has any bearing on getting radiation now. This really is a "thing" and not just a conspiracy theory. The National Institutes of Health has info about it. For some of us, this may be important to tell a radiologist before treatment.
If anybody has any info about this, you can let us know.
You should have mentioned how it's used in mbc.
Good information, thanks. My eyes kept diverting to the orange sculpture.😂
Sorry!
My last radiation treatment was February of this year after a bilateral mastectomy and I recently noticed some daily back pain, could this be related?
I wish I had this 5 years ago!! Thank you.
Can you talk about angio sarcoma?
My sister died from it in 2016. She had a lifetime of cancers... 3 different times. Breast (35 yrs), labial (late 40's) and then the angio sarcoma (60ish) She died at 63.
I was diagnosed in Feb 2020 with Hr pos / Her 2 neg in my left breast. I had a mastectomy and radiotherapy. I had lymph edema at first... never bad... but it seems to have settled down though I still use my compression arm band and gauntlet. They said I didn't need chemo. I have been taking Letrazole since Fall 2020.
They say that angio sarcoma is rare .. but when I was waiting for one of my appts I met a lady who was diagnosed with this which, of course, frightened me.
Can you elaborate please.
Is it known to be hereditary?
I'll look into that flu shot pronto! Thank you.
Dr. O'Riordan, what does the research say about proton therapy for breast cancer? 😊
What is session?is it I day called session or I week?
Love your explainers! I completed 25 rounds of proton therapy this summer including on lymph nodes in the neck. My throat is still irritated, especially when I talk a lot in a day. Is there anything I can do to promote more healing in my throat?
what’s proton therapy? is that different than radiation?
I am age 58 have stage 3 HER 2 positive ER+ IDC with 2 lymphnodes invovled for which I am getting 6 rounds of TCHP [ starting this Thursday, 11-14] If I have a "complete response" & it is no longer in my lymphnodes, is there a chance I would not need radiotherapy? After surgery I will continure doing 12 months of "targeted therapy" (*I believe this is herceptin). Wouldn't that nixx any micro cells floating around? I am extremely resistant to these goons irradiating me. You can only do radiotherapy once right? So why not wait? What if I save it as my ace in my pocket for if I have a recurrence?...
had 15 sessions of radiotherapy to breast and collarbone. It was fine. The worst thing was having to go to hospital every day but the treatment itself was easy. They give you cream to use to soothe slight redness.
@annief.9256
I’m a radiation therapist who was also treated for breast cancer 2 years ago. We’re not goons.
@@amya9597 Sorry :)
@
Apology accepted. 😊
My implant after my mastectomy was ruined . Just a round hard ball now which doesn't move and a deep crater under my arm with having twice lymph node surgery . Small price to pay knowing at least the cancer has been taking away .
Hi Dr Liz I have stage 2b breast cancer and I’ve done axillary dissection for two positive sentinel nodes. One with extracapsular invasion. Would you advise for axillary radiotherapy for my case? Thanks
I can't give personal medical advice. Your team will be able to advise you about your best options
I had my mastectomy and sentinel biopsy mid June, all 3 nodes removed had macromets. I started chemo in July, have one more round then full axillary clearance in December. THEN radiotherapy. It feels like overkill to me, if I have the chemo doesn't that kill wandering cells? Surgery chemo AND rads feels like way too much and a guarantee of lymphedema or future side effects.
what’s full axillary clearance? is that another surgery?
@@Elaine-w2sI suspect they mean an axillary dissection of all lymph nodes in the armpit. This is usually a second surgery. I have read that there is some thinking that the full axillary surgery may not be necessary since you are doing radiotherapy.
I am not a doctor. This is just an article I read, and my surgeon also mentioned it. She is having me meet with the radiologist and see what he suggests.
@@cherfromtn8225 hi! thanks
did you have surgery and chemo too?
@@Elaine-w2s I had bilateral mastectomies, but I had 3 involved lymph nodes. This is why I am having a consult with a radiologist. The breast cancers I have (I have two kinds!) are both hormone receptor positive. They have a low oncotype score , so chemo would not be that effective. However, aromatase inhibitors (like Letrozole or Anestrazole) could be effective at stopping cancer from coming back.
The real question for me is whether to do any full axillary lymph node removal plus radiation or just do radiation alone. The doctors are moving away from full lymph node removal because it increases the chances of lymphedema in the arm.
This is hard to treat and can be a serious, chronic problem.
I also have another issue because I had some radiation exposure as a baby--when the radioactive dust from the Nevada nuclear test sites floated east in the US. I was in one of the states affected. It may not have been much radiation, but I did drink milk from a local dairy in which the cows would have eaten grass with this dust on it. Hopefully it was not enough to cause a problem, but you just don't know.
Radiation is very scary.
@ oh so if you have positive lymph nodes it’s ok not to remove it but just do radiation instead? that would be nice to prevent lymphedema.
What do you mean you have two kinds? is it ductal and lobular?
🥀🥀💛🥀🥀💛🥀🥀💛🥀🥀
Everything done in cancer treatment has unpleasant side effects on the body. From tablet to other treatments. It is best if you avoid what she mentions. Thank you for the knowledge. behind radiotherapy.
That’s a hell of a long list of very unpleasant side effects.
I agree. At 68, I have had a bilateral mastectomy for invasive lobular and invasive ductal. Two positive lymph nodes and one with isolated tumor cells. I will probably be on an aromatase inhibitor and 22% of people stop those because of side effects.
At my age and with no dependents, I am leaning towards just taking those AIs (if I can tolerate them) and just enjoying however much life I have left. This choice is not for everyone.
Some people take the aromatase inhibitors and have no problem. Maybe I will be fortunate to be in that group.
Only bad choices apparently.
Yes. Breast cancer used to be a death sentence, now it has been commuted to a life sentence. Your life is, on average, shortened; and your quality of life destroyed.
I am 66 and had surgery in October for stage 2 breast cancer, grade 3, and very Estrogen sensitive (8 out of 8). I am unmarried, no kids, & live alone. Both parents are dead. So I was thinking of refusing radiation therapy, and 5-10 years of AI (the taking of which, besides many other bad side effects, is known to reduce bone density and increase the likelihood of fractures).
Luckily, I don’t need chemo because the tumour was small (8mm, with a 28 mm spread) and, though invasive, had not spread to my lymph nodes. The main thing that’s stopping me from refusing further treatment is the worry of recurrence of the cancer.
The nurses say that “some” women don’t have any problems with AI. But they can’t tell me what percentage “some” is. I mean, is it 1% or 50%? It makes a big difference.
The “Predict” internet tool is a big help, as far as it goes; but it would be better if it could predict recurrence as well as survival.
@pmw3839 I heard that 66 percent of people taking AIs have some side effects and 22 percent stop them. Some people can deal with side effects and some can't. There are lots of YT videos on how to reduce the side effects--like exercising for joint pain. I may take them and see what happens. I can always stop them or see if the dose can be reduced or taken every other day. My real question now is radiation.
I have thyroid problems and some difficulty swallowing, so if they mess this up, my life could get a lot worse.
I am meeting with the radiologist but may just skip it. It sounds like this disease is going to get me anyway. At 68, if I could get 5 decent years, I would be happy. Very sad to make these decisions. ,but the medicine is not yet advanced enough to help much. The next generation of women, hopefully will be better.
@@cherfromtn8225 I am going back and forth regarding the radiation too (though I haven’t got a thyroid problem). Once it is done, it can’t be undone. I feel like I have had chronic fatigue for over a decade, and all these treatments have fatigue as a side effect. I dread to think what that will mean for me. But then again, without it, there is supposed to be a very substantial increase to the probability of recurrence (though they can’t give me personalised percentage figures).