Should I do chest wall rads?

This may be helpful in understanding the guidelines:

NCCN Guidelines Stage 2

The guidelines are guidelines, you need to be comfortable with the treatment plan.

chemo is to prevent distant recurrence; rads reduces risk of local recurrence. It is ultimately up to you. Perhaps you can get a couple opinions. It is ultimately up to you. Ask them what percentage it lowers your risk. Ask what the risk of rads are. If they do not specifically describe risks, find a different RO. You need to decide if percentage benefit is worth the risks

Did you have lympho vascular invasion? That seems to get you radiation even after mastectomy. Ask questions specifically why do you need radiation. The benefit from radiation after mastectomy is questionable but the studies do agree that radiation to nodes rather than ALND is better.

LVI is different from nodal involvement . It means that cancer cells are found in blood vessels and lymph channels in the breast. I just now realize that usually you have that information after the surgery. You could wait for you pathology after surgery and then get 2 opinions. I saw 2 radiation oncologists and they both gave me the same explanation. But the benefit from radiation after mastectomy may be less than 5%.

Houston, I agree with you. People are continuously irradiated even though they should develop protocols for post-mx patients. As someone mentioned before the increase on survival for post mx is only 4%. If one weighs the risks versus the gains, and the risks are larger and more serious that we are informed, then we can make a very well informed decision. I have been reading in this site as well as others, about radiation damage and I don't like what I see. I know that not everyone will get serious side effects, but those who get it, their life become more complicated than for those that don't. For a person with necrosis, she could loss her breast or her life if she does not get medical attention on time; for a person who have fibrosis, there is continuous pain and hardness; both, to get better, will need to get hyperbaric oxygenation tx for two to three years to get back to "normality."

I got a second opinion and the second RO just listed me with a full lifetime dosage of 50.40 Gy. The first one wanted to give me 60 Gy (50.4 on regular rads and the remaining in boosts). I considered it to be high. If I get the recurrence, she can irradiate me with the tumor inside. I will keep believing that a cancer cell does not need the same amount of radiation as a well differentiated tumor.

Yes, ROs and MOs need to eat so they will always promote their line of job. Ask your MO about the RO's suggestion of full RT. And ask about lymphedema; it is not mentioned by any oncologist but it is a problem when it flares up and makes one's life miserable. A full dissection, a full rad to armpits, and even a biopsy can provoke a swelling. So ask, ask, ask. And if the MD gets mad then get another who can answer and clarify information.

I want to add that my original tumor was 3.3 cm and the chemo AC+Taxol didn't reduce much, so my tumor after chemo was 2.8. The chemo did cause me to have menopause after AC though. If you have a PCR from chemo then you may not need rads on the chest wall. As your RO said your benefit from rads is 5%. In my case RO said 30%.

MariangeI43, thank you for your inputs. Like you said, the second RO is a little more thorough, but she said standard surgery the BS has to take out 10 lymph nodes so she's kinda surprised that I had only 2-3 SNL from my PATH report. I went back to talk further with the first RO he's nice to explain to me about the new high tech machine they just had for a year. He showed videos that show a small heart is already out of the radiation field that breath hold is not necessary. He said if the person's heart is enlarged touching the rads field then breath holding would be used case by case. He looked at a CT I did in April and it shows my heart is small within the circumference. So that gives me some peace of mind. However he also let me know the dose of rads I would need is 4860CGY plus 1200 CGY for scar boosts in 27 fractions. I'm no chemist so IDK if that is alot. What is everyone dose of rads given by your RO?. Thanks.

Thanks Mariange, the first RO told me it the dosage is 48.6 CGY and 1.2 CGY for boosts. I asked the second RO but she hasn't responded.

OK, here some bad news, I posted earlier that I went to see drs at MD Anderson, well, the RO at Anderson looked at my PATH report (2SNL removed with no tissues left blasted by chemo). She called my OC at Kelsey requested them to having me for surgery for more lymph nodes. The OC said Anderson is the experts so she had to oblige the request. I was furious having just recovered from two surgeries (over 8 weeks now), now they want to open me back up again all because that BS from Kelsey didn't do it right? I'm scheduled to go see him to discuss it.

On the same token, I don't see the need for more lymph nodes taken out if they will be irradiated. Whether they took five or six lymph nodes or 2-3 there's always some possibilities remaining. The only thing is the BS took out 2 sentinel and no axillary. The RO at Anderson told me standard is they take out 10 nodes. Isn't that an overkill? So what are my options now, what can I do if I don't want another surgery? Thank you all.

Houston, this is a personal matter between you and the RO. I can only say that I didn't let the BS do the dissection of lymph nodes on me. I am still working and I need my arm in functioning order. I cannot develop lymphedema, and if I have to, it must be a slight one. Since he operated on me I set the limits. The BS is the expert but it was my body and I didn't let him have more than three nodes. I said him NO DISSECTION. I knew and accepted my risk. Anyway, if the BS knows his job and only one node was positive, he doesn't have to cut out the 10 or 20 just because is protocol. Our lives are more important than protocols.

I won't tell you what to do. I will tell you that you investigate what evidence they have to justify the cutting of more and more lymph nodes. If you decide to irradiate, you can decide whether or not you want to let them remove your nodes or not. It is a personal decision that depends on how active you are, your kind of work, if you live alone or not, if you have other family members that will take care of you, etc.

Spreading, I don't know. I need more information. However, neither chemo nor RT can guarantee you that you will not have a recurrence. Some people have recurrence even undergoing both of the treatments. Others don't. There are so many variables. The only thing I can tell you is DON'T PANIC. Relax, ask questions, do you have a friend that can go with you? And if you undergo the surgery, please ask them to send you to a specialist in lymphedema at the slightest swelling. It is difficult to live with that condition.

Can you tell me what was written on you PATH report? Whom did you decide will be your RO, the first or the second? If the second RO obliges you to have a lymph dissection, you don't need to comply. If the first RO do not need the removal of lymph nodes, well, let him do RT. Look what is best for you now and in the near and far future.

I was reading an article that says many ROs and MOs over-treat patients. It is true. They play safe but we pay a high price for it. Take care. We are all in the same boat.

What do you plan to do? I don't think it was an error from BS to remove only two. Do you plan to continue with your OC? What is her specialty? She must have some medical criteria to treat you. Be difficult, question; you, among everybody, are the most interested in your well being.And, NO, you don't have to submit to another surgery just because a second opinion, who is not treating you, just called your OC and asked her to refer you again to BS.

Just in case, Happy Thanksgiving to you and family.

Houston, even though I was not in that dilemma before, I can say the following. 1) Losing more lymph nodes can lead you to an attack on lymphedema in the very near future. (Even the removal of two can rise the statistics on lymphedema on any of us); 2) Your armpit area will be radiated because is standard protocol (whether you have removed two, 10 or 20); also your chest wall and other areas that had stained in the SNB. It will include standard dose and some boosts. That'll result in an additional 40 percent of developing arm and trunk lymphedema. Please, see the photos of persons living with lymphedema. That is not a condition to be taken lightly.

I don't think the BS did wrong when he did the surgery. I think he was thinking what was better for you in the long run. You will be living with the consequences. The action of the second radio oncologist of pushing you into a protocol just for the sake of it was wrong. It has created doubts on you and that is not good. Remember surgeons stain the area and then remove the nodes who absorbed the dye. The ones who see stained nodes are the BSs not the ROs. That RO just wants the nodes out, no matter this will damage your arm, your life, your work, etc. Since it is not happening to him or her, the RO doesn't care. There is a controversy between over-treatment and what is really necessary. If removal of two will do the good, why extract ten or 20?

I believe radiation will do the local cleanse that is expected. That is a regional method of clearing cancer cells from the zone. It is not 100% certain (no method is). Whether we have three, four or five surgeries, two or three complete rounds of chemo, or 20 or 40 fractions of RT, no one can guarantee that we will be cancer free or that we will not have recurrence. The first RO I saw told me the following: "You will followed up during the rest of your life by RT staff because of the long and short side effects of the RT, that can be necrosis, fibrosis, including cancer." I asked the second RO I saw if I were 100% completely cleared of cancer if I accepted the 28 sessions (fractions) of RT. She could not guarantee that either.

In one of the discussion rooms there is a lady who had a recurrence and she complained of having had surgery and a complete round of RT even when she had a very small tumor and the doctor had guaranteed her that she was going to be cancer free after the treatment. Only God knows and time will tell us. So when you go to the BS, ask him or her to tell you in plain English how many nodes were involved and stained in SNB. Ask if he or she thinks that the nodes not staining are a real source of possible cancer in the future and what are of the probability of developing the disease after radiating the area (if you don't remove the lymph nodes). Do not go out from the office with doubts. And if you are still in doubt, ask for an MRI or a PET/Scan; the second is better in detecting cancer activity in other areas of the body. You don't have to undergo surgery if the area is neutral. I think your brother doesn't know the risks of surgery when he makes the comment.

Last thing, cancer cells are resistant to treatment when they are hypoxic, and some or many of them are dormant in our bodies So the better way to assure yourself that you continue cancer free is to change life habits. If you smoke, stop it; if you eat carbon-smoked meats and food, reduce or stop it; eat more vegetables and fruits; do yoga, exercise or walk. And read or see comedies; the best way to heal our body is laughter (especially for long term chronic disorders). There is a book I recommend: Anatomy of an illness. Also what Patch Addams did is unique and real. You will see. Bye, dear, I need to sleep.

Houston, Sorry to hear you are already having the joint pain. Keep the changes in eating and you will feel better. I told my MO about it and he said that my arthritis was due to age and not to Arimidex. I looked at him and I didn't believe him, of course. I have two 500 Tylenol pills every day. If not enough, I take two more at night. Since my life without cancer depends on it, I will keep on this small yet deadly pill for as long as I need it. I am also taking anti-oxidants: turmeric for inflammation, Vit C, graviola oil, echinacea and goldeanseal, and last but not least, resveratrol. They are anti-carcinogenic agents and they help me to control the cancer cells that are free-moving.

I am really glad you don't have to undergo a new surgery. The RO was wrong when she wanted to push you into a new surgery. I hope RT continues being fine with you. Let's celebrate when you finish RT.

Bye, see you soon. God bless you and happy holidays.

Maria

Hi, Houston2016, I hope you are not feeling side effects with RT. If you look after a diagram of the lymphatic system, you will find that around the breast there are several sites with lymph nodes. The intramammary lymph nodes are located near the center between the breasts. In the figure below you see the small white parts (ribs) and running down fine small blue threads. Those are the intramammary lymph nodes. They are irradiated with the chest wall. Since they belong to the lymphatic system and can, in theory, transport cancer cells to other parts of the body, ROs and staff irradiate everything, armpits, supraclavicular, intramammary and chest wall. Since this region is near the heart, they must be quite careful not to damage the heart muscle.

ROs oppose patients using antioxidants because they believe antioxidants interfere with RT. RT produces "healthy" free radicals and antioxidants remove them. If you need further information, you can contact me.

Houston, Happy New Year 2017. Many health plan go after generics because brand medications are more expensive. They will only cover brand meds if there are no generic equivalents. I used to pay around $60 dollars with Synthroid and now I pay around $12 just because it's a generic. To help you with muscular pains you can have cold or hot pads therapy. Besides, if you are not allergic to aspirin, you can use NSAIDs; they will help a lot. There is also ointments and creams based on arnica (arnica gel or Arniflora, arnicare gel) and menthol (Bengay, mentholatum ointment) that you can use; they are anti-inflammatory meds that are not anti-oxidants. I use them for pain in my hands and feet. I apply it in the area, if in the feet, I use socks to avoid slipping.

What do you mean with lower pressure extremity? As for the fluffy underarm, I think is lymphedema too. Can you locate a physician specialized in perivascular disorders? They are the ones who treat vascular problems in extremities. My orthopedist sent me to one and I still had not had the chance due to so many doctors' appointments. Or ask your MO to send you to one before it worsens. There are accesories to deal with lymphedema of the trunk and of the arm.

I don't think that the RO would admit about the lymphedema. They are worried about not being sued for malpractice so they would say anything to avoid a confrontation. They should be less evasive and more sincere. There is a lot of things they keep silent about and they avoid the topics. Better get a specialist in vascular diseases.

Can I ask you about your CT? How long did it take the RO to take the measures? Did the simulation take more than an hour?

Hoping to hear from you.

Maria