Refusing Radiation?

Please tell me what is PCR and how does it affect radiation decision?

Thank you Mardea. i'm glad your RO agrees with you. I'm afraid pathology will find live cells as I didn't have chemo only hormone treatment. I just read through all the posts and I'm not so scared of radiation, The chest wall thing got me. Radiation will make sure it's clear. I can always quit if it gets too hard right? Thanks again. I check back often. Surgery in two weeks. I need so many answers. Oncologist very unhelpful. Surgeon off for the week. Best to you too.

I'm sorry to see so many in the same situation as me, just recovering from treatment and surgery, only to have to decide whether or not to put myself through more, possibly damaging treatment. My SO said that I should have whole breast radiation treatment within eight weeks from surgery. I had a partial mastectomy with tissue rearrangement and reduction. I did not know I would need whole breast, as a imagined it would only need to be where my tumor bed was located. Now I am spinning. I wish I had known this before surgery. I am considering forgoing whole breast radiation and possibly all radiation. I was 36 at diagnosis, stage IIA, that was changed to IA after treatment (I did neoadjuvant before surgery). But it was a very aggressive type Triple Negative, Grade 3, Ki67% with necrosis. Pathology after surgery showed there were still cancer cells, even though I did have a very good response, shrinkage of 63% and 90% (there was a small satalite 6 cm away). Good margins, one was 4 cm. The pathology report also showed significant changes to the cells from the chemo. But it wasn't the complete response I had hoped for. I think if they would have placed my port on the right side, I would have had a better response, since my tumor was on the right. I was told by my SO that radiation would have a significant reduction to my risk, she said by 2/3rds. But I don't want to live a life where my quality of life is reduced by the effects of radiation 5 or 10 years from now. I am feeling great having finished chemo in September and just starting to feel ok after surgery with my nice (smaller) boobs. I am single with no kids, but would eventually like to have that in the future, though my chances are looking bleak for any normal life at this point. I have a Radiology consult at MD Anderson next month and a local consult in a couple of weeks. There is a proton center here and was thinking of making a consult with them. Will they treat breast cancer with proton therapy? It looks like it may have fewer possible side effects.

you are not alone!!! I refused radiation over 2 years ago. I was just done with the "standard treatment" meaning we treat all cancer patients with the same poisons. I am a nurse and everyday I see the havoc the chemo and radiation has done to our bodies. I say no, thank you. Please remember all these treatments are recommendations, you are the one in control, it's your life and your body. Hope you are well

I had a full mastectomy 2 weeks ago. I had two tumors in each breast, and in one of the breast I had two types of cancer (lobular and ductal). My tumors were all relatively small. The largest being 2.5cm. I had the sentinel nodes dissection in both sides. One side was negative. The other side showed micro metastases in one of the two sentinel nodes that were dissected. My challenge is now deciding if I should go further in the removal of my axillary lymph nodes and have radiation treatment. I have trouble justifying having those two, as I see the real benefit of removing my axillary lymph nodes, with all the potential risk and complications, having radiation to my breast (which where removed anyway) part of my neck and the arm pit area. Also, I had to go under chemotherapy anyway, in order to address the fact that some cancer cells were released to the rest of the body through the lymph nodes. Since I had an early stage cancer, most of this treatments would be of a preventive nature mostly. I kind of feel like going through chemo and long lasting endocrine therapy will be a good path for me. But, has anybody here been through something similar that can enlighten me?

LatinMiixy,

Hi, Mods, I read all the forums and see if someone comes into it and chats.

LatinMixy, I have had a complete mastectomy of right breast with clean margins. It means that my cancer was encapsulated and I could feel it from the outside. My Oncotype was in intermediate region (26) so the benefit of chemo was only 12% which means the survival rate was not greatly altered by chemo. Also, since I had one positive axillary node and I am taking AI since June 2 (before mastectomy) my body responded quite well to hormone therapy and the tumor shrank before being removed. Hormone therapy helps a lot.

I was considering radiotherapy. However, the benefits of RT on a post-mastectomy woman with hormone therapy was 4%. The guidelines changed recently but not the benefits. The risks outweigh the benefits. I am in total agreement with the ladies who have exposed here their troubles and worries. One has to think about quality of life QOL. Physicians go to standard protocols and do not personalize medicine, which must be a requirement with cancer since cancer is as individualized as people. Cancer is unique so it cannot be treated with standards. For example, a woman receives A+C, and T as chemo no matter if her cancer is IDC, IPC, BRCA1, BRCA2. Do you expect to be cured of a bacterial pneumonia using prescriptions for viral pneumonia? Why? To begin with, viral pneumonia does not need antibiotics but bacterial pneumonia does. Cough medications may help or not depending the cause and the severity of inflammation. Same thing with cancer, 2 out of 10 are helped with chemo, 50% have recurrence with or without chemo. 50% also have recurrence after having RT.

I was counseled to receive RT. However, reading all these stories of horror (I don't have to see Freddy Kruegel at the movies) have me consider otherwise. ROs do full lifetime rad doses and that presents an issue to us. No matter is the tumor is 1 cm. or 10 cm. they fully irradiate the tissue. If you and I only have a piece of tissue left, then why all the dose if we have clean margins? There is less tissue with a mastectomy compared to a lumpectomy. Another thing, they irradiate the chest wall; what is the chest wall? pectoral muscles, ribs and internal organs (lungs down under) besides the skin in those who have had a mastectomy. For those of us who have implants, that is a no no because the implant or TE is damaged.

When I went to see the first RO I was sent to, she said that my risk of lymphedema was 6%. However, after reading a lot of medical journals and articles, the risk is not 6 but 40%. The SNB gave me another 6% and the accident I suffered pushed me into another 15%. If added up, it is 61% which is not quite true. Math for the body does not function by adding up; sometimes they have exponential functions. I am working so I need my right arm to write and do whatever tasks are ascribed to my position. If I develop a full blown lymphedema attack, who will take care of my job and of myself until I develop new methods to deal with my new reality?

The first RO prepared a list of must do and included 28 regular tx with XR/each, also boosters (5-6) and several CTs in the process. Total cost of treatment? More than 12 thousand dollars. That is exactly my gross salary of six months without deductions and no payments of rent, health plan, loans, food, transportation, etc. I told the secretary: "Erase me from the list because I won't stop paying the rent and the recurrent expenditures to pay you my tx". And I am not counting all the side effects that will put me to bed and probably my salary will go down for a few months until I finish all this turmoil. And to deal with Post Traumatic Disorder I will need a psychiatrist (for the anxiolytic medications) and a psychologist to deal with stress in job and in personal life.

I will see a new RO on the 24th. I will explain her my circumstances: only one node in axilla and it was removed. Two nodes in supraclavicullar fossa which need a little bit of radiation but being careful of not radiating thyroid gland because I don't like to get a thyroid cancer in the near future. (No more cancer, please.) I have moderate osteoporosis so rad tx can worsen my chance of getting fractured ribs and vertebrae. Just making bad moves and torsion of my limbs fracture my extremities. I have recently a multiple fracture right foot; do I need to add more? And then pneumonitis and lung cancer.

ROs usually use full treatment, at least here in my state. Hypofragmentation or not, the 45-60 gray dose is applied whether you like it or not. I want to be cured of cancer. But I am opposed to have to manage radiation effects just because ROs were chasing a thousand phantom cancer cells and in the process they created a million more. That's not fair. I have to agree with ChaosRaines. I have to look for the decision that makes me happy and comfortable with myself, I am not looking for my doctor's happiness. I am looking for my QOL.

Besides, not all doctors are made equal. There are those who are really good (very expensive), and those who are deficient. Go to this site and read the comments. There are other sites as well. I am concerned with a woman who was applied full dose by error and she is now having radiation sickness and have to endure more plastic surgery to correct the effects of excessive irradiation. Moderators, not always ROs and MOs are right. They need to eat so they need to recommend RT; so with MOs. They need to recommend chemo because treatment is not free. And both charge a lot. Just see the info Medicare sends regularly of medical fees. My 10% deductible medical fees for RT were $1,267.14 and they are not as high as I imagined. However, I do not have the money to pay the deductible fees because I am running from MD to MD, I pay food or parking for those who take me to an MD appointment and I have to pay hospitalization fees. After all, that's the one side of medicine that we don't like to see is that medicine is a high-end job, you can be rich in no time and there are a few doctors who study medicine to really help others.

LatinMixy, be careful of full axillary dissection. It might be recommended but is it wise? Full lymphedema will develop and besides being painful you will have to get a physical therapist for the rest of your life. Are you prepared for that? You have a better chance than me of not recurrence because I didn't accept chemo (not while I am working.) Medicare does not cover lymphedema and if you are young now, you must think about you in the long far future as an old woman. Count all the treatments you are having: mastectomy of both sides, SNB of both sides and excision of affected nodes, hormone therapy and chemo. As you, I had one node in axilla that was removed and two in lower portion of neck (which were not touched and should have been removed during surgery - not protocol). My opinion is that you don't need a full axillary dissection, you only had two nodes infested. If you do and you have also radiation, you should now look for a PT that treats lymphedema. That is your decision only. Sit with RO and MO and a peripheral vascular specialist and ponder their opinions.

Can you post back to see how you are doing? Take care.

LatinMixy, when I get no answer to my worries, I feel alone like you. Do not worry. I wanted to tell you that I have been monitoring my health by labs tests. In my case, the cancer antigen CA 15-3 was the only cancer antigen that had high values (33). My changes in diet, exercise, and eating antioxidants have been successful. My CA 15-3 is normal in value and I will try to lower from 16 to less than 3. Your physician can monitor your state by lab tests. I am doing by myself so I have to pay the full cost of the test but I don't care if it has some meaning. I don't know how you are financially speaking, but you can invest some money in getting those tests unless you can convince your doctors.

About chemo, you have to study first to be able to convince your MO about it. I was able to negotiate with my MO because I decided to research the area and go to him with reliable information. Otherwise, I would have ended fighting with him and with every other oncologist I have interviewed with since my dx. So take a time, find a good article about your type of cancer in the medical journals and prepare a good speech for him/her. The doc will know that you know what you are saying and will pay attention to what you ask and say. Doctors treat patients like they do not know anything and are condescending. I like to be treated as equal. Remember, they do not have a job unless we credit their knowledge and go to them. No one is a doctor in a vacuum. They need people to sell their expertise.

Stay in touch. Please, thanks

LatinMixy - A full lymph node dissection for micromets seems like overkill to me. You may want to discuss the article I've pasted below with your surgeon - and/or seek a second opinion. (This was published this year, so is as current as it gets.)

Locoregional Recurrence After Sentinel Lymph Node Dissection With or Without Axillary Dissection in Patients With Sentinel Lymph Node Metastases: Long-term Follow-up From the American College of Surgeons Oncology Group (Alliance) ACOSOG Z0011 Randomized Trial.

Ann Surg. 2016; 264(3):413-20 (ISSN: 1528-1140)

Giuliano AE; Ballman K; McCall L; Beitsch P; Whitworth PW; Blumencranz P; Leitch AM; Saha S; Morrow M; Hunt KK

BACKGROUND AND OBJECTIVE: The early results of the American College of Surgeons Oncology Group (ACOSOG) Z0011 trial demonstrated no difference in locoregional recurrence for patients with positive sentinel lymph nodes (SLNs) randomized either to axillary lymph node dissection (ALND) or sentinel lymph node dissection (SLND) alone. We now report long-term locoregional recurrence results.

METHODS: ACOSOG Z0011 prospectively examined overall survival of patients with SLN metastases undergoing breast-conserving therapy randomized to undergo ALND after SLND or no further axillary specific treatment. Locoregional recurrence was prospectively evaluated and compared between the groups.

RESULTS: Four hundred forty-six patients were randomized to SLND alone and 445 to SLND and ALND. Both groups were similar with respect to age, Bloom-Richardson score, Estrogen Receptor status, adjuvant systemic therapy, histology, and tumor size. Patients randomized to ALND had a median of 17 axillary nodes removed compared with a median of only 2 SLNs removed with SLND alone (P < 0.001). ALND, as expected, also removed more positive lymph nodes (P < 0.001). At a median follow-up of 9.25 years, there was no statistically significant difference in local recurrence-free survival (P = 0.13). The cumulative incidence of nodal recurrences at 10 years was 0.5% in the ALND arm and 1.5% in the SLND alone arm (P = 0.28). Ten-year cumulative locoregional recurrence was 6.2% with ALND and 5.3% with SLND alone (P = 0.36).

CONCLUSION: Despite the potential for residual axillary disease after SLND, SLND without ALND offers excellent regional control for selected patients with early metastatic breast cancer treated with breast-conserving therapy and adjuvant systemic therapy.

Dear Hopefull,

I am a 71 yr. old AA great-grandmother. In November of 2017 I had a 3D mamo with no obvious or suspicious issues? One afternoon I did a self-exam and thought that it didn't seem quite right. I immediately call my PCP, had another mamo by a different  radiology facility. I was diagnosed on 9-21-18 with DCIS, Stage 2, ER-Positive in my left breast, a day before I turned 71. Subsequently,  I had a PET scan, an ONCOtype test (15) a modified radical mastectomy on October 15, 2018. Three SNB were removed and they found a 2.1mm lymph node in my breast tissue during surgery. My surgeon wants to go back in right away and remove all the lymph nodes in my left arm. My Onco recommended Letrozole that I am currently taking daily. I am being pressured to have 6 rounds of radiation. I refused chemo and since my oncotype  was a "15" I am 90% sure I don't want radiation either.Every time I make a decision NOT to do radiation, I get another call to do either additional surgery and/or radiation.