Anyone else is a radiation "gray area"?

katiegrey · May 2014

I just completed 16 weeks of chemo and a BMX for IDC on May 15. The results of my path report said all my nodes were clear, and my tumor size had shrunk from nearly 6 cm to 4.7 cm. Radiation is automatic if nodes are involved, or for a tumor 5 cm or larger. But since mine shrunk with chemo before surgery, I fall into a gray area. All of my docs are now saying the radiation decision is up to me.

My feeling is that my body has been through enough torture for one lifetime, and I'm inclined not to do it. I've found a few academic studies that say nodal involvement, rather than tumor size, is a greater indicator for radiation, and that survival/recurrence rates are no different with or without radiation for women with clear nodes but larger tumors.

I hate making this decision, though. Anyone else out there experienced anything like this? Thanks!

TB90 · May 2014

Hi Katie: My situation is quite different but has some similarities. I had a mx for DCIS. That should have done it, however, I still had a positive margin. BS still insisted that recurrence was unlikely due to mx and radiation was not indicated. I researched this issue extensively and found support both for and against radiation in this situation. The RO that I consulted with stated that for someone who is so thorough and cannot leave things unanalyzed, perhaps I would be more content having done radiation (I arrived with a binder of published studies Lol). So, could I live with the increased risk of a recurrence or the risks of radiation better??? Then there was the fact that if radiation was done now, it would not be available in the future if a recurrence did happen. But with a mx, recurrences are often to the chest wall and quite serious, so should I do everything upfront to prevent a recurrence? OMG I drove myself crazy. Hardest decision of my life. And no one could help me. The good news is that once I made my decision and completed the tx I have never had a regret. My advise to you is gather all the info that you can find and then make the best (there is no right answer) decision for you. Good luck with that and look forward to finding peace with your decision.

Hopefully others with a more similar situation will jump in here.

katiegrey · May 2014

Thanks for the feedback, TB90. This is definitely a hard decision. I'm a single mom with two young children, so recurrence is pretty scary to me and I want to research carefully. I also fear the long-term risks of radiation (possible higher risk of heart disease), especially on the left over the heart, where my tumor was. On the other hand, radiation seems of be easier to get through than other treatments like chemo and surgery.

inks · May 2014

Did they biopsy any of your lymph nodes prior to chemo?

I had a micromet in my lymphnode and the size of my tumor is complicated. Since it's multifocal they can measure it all as one which makes me 5+cm, or they can go by the largest 2.1cm. One of the ROs that I consulted told that she would have recommended radiation even without my lymph node. I had LVI and necrosis too. Both ROs recommended radiation also because of my age (37) so I did it mainly because if I were to get a chest wall recurrence the outlook would be pretty bad.

IMRT radiation is a little better at sparing the heart so try to consult with an RO that can provide that. If you are on the fence about rads go get a second opinion and ask what are the reasons they would or would not recommend radiation. I felt better about my decision after talking to 2 ROs. Radiation was not as bad as I thought it would be.

TB90 · May 2014

Katie: A lot of the new research has shown that there is no more likelihood of heart issues when radiated on the left, then on the right. This is thought to be due to the newer rad machines that send their rays in at an angle. Also, gated breathing (holding your breath) is no longer required if these rad machines are used. You may want to look into what type of machine is offered in your treatment options. Looks like heart issues from rads may become a thing of the past or at the very least, very unlikely. I am a bit of a control freak and researched this to death. Although all SE from radiation are very unlikely, as my RO stated, someone has to win the lottery. So I really worried too. I actually breezed through radiation except for some skin issues at the very end. I never even think about the radiation now or even long-term SE's, but of course, still fear a recurrence. Even with the low chance of my recurrence, and given my research, the odds of a radiation SE were far less than a recurrence. That helped me a bit. Still a very difficult decision.

IMRT has had some recent concerns, so please check into that before choosing.

To make things even more difficult, it does depend also on the RO, protocol in your treatment centre, the equipment, your specific cancer, etc. etc. Like inks stated, getting a second opinion is also very helpful.

Find out what your chances of a recurrence are with and without radiation. Then compare that to the risk of SE. If you are a number gal like I was, that really helped. Your RO should be able to assist you. So if your reduction in recurrence is 7% (that was mine) and the chances of SE (long-term) were 3% (made that one up), then you have a 4% gain by perhaps doing radiation. But your personal health issues, etc. would have to also be considered. The risk reduction by doing tamoxifan for me was 3% only and I agreed with my RO not to bother given the SE's and risks of the drug may outweigh that low percentage. Nothing is definite though, but this rationale really helped me. Hope I have not overwhelmed you. I can dig up some of the research for you if that would help. ((hugs))

katiegrey · May 2014

inks - I did have nodes biopsied before chemo and they were clear. I had three dissections on each side during my mastectomy and again all were clear. Interesting about the IRMT - I'll ask about that.

TB90 - I agree - the numbers really speak to me, too. So I plan to ask about recurrence v. SEs. I haven't met with an RO yet, but after hearing from you both, will definitely get more than one opinion - thanks so much!

Beesie · May 2014

The benefit of rads for someone who has a very large invasive tumor goes beyond simply reducing local recurrence risk. Rads also improves survival rates.

This article references a study that analyzed the results of 72 clinical trials with over 42,000 women. The conclusion was that rads after a mastectomy provides a survival benefit for women who have large invasive tumors:

Study Confirms Radiation Boosts Breast Cancer Survival

This second report digs deeper into this study and concludes that there are specific factors that influence the recurrence risk prior to rads (age, size of initial tumor, clinical response to chemo, etc.) that should be considered in this decision:

Locoregional Radiotherapy in Patients With Breast Cancer Responding to Neoadjuvant Chemotherapy: A Paradigm for Treatment Individualization

A key point driving the conclusions in this analysis is that "It
is recognized that the extent of response to
neoadjuvant chemotherapy is associated with prognosis, with the best
relative
disease-free survival occurring in those who achieve a
complete pathologic response.
Therefore, it is logical that if upfront chemotherapy can place a
patient in a sufficiently low risk category for locoregional
recurrence after surgery, then adding radiotherapy
will not significantly reduce the risk of breast cancer mortality."

katie, while chemo was somewhat effective at shrinking your tumor, you did not have the "complete pathological response" that the authors here refer to, which could suggest that your risk of locoregional recurrence remains relatively high.

Has your oncologist told you what your recurrence risk would be with and without rads? It seems to me that this is the information you need to make an informed decision.

katiegrey · May 2014

Beesie - I love a woman who loves her research! I haven't spoken with my oncologist yet - I just got my surgery pathology report back a couple of days ago, which was when two of my surgeons said I was in the gray area.

I'm printing out both of your articles to bring to all of my doctors' meetings next week, so thanks so much! Here's one that I keep coming back to that seems to speak to me: node negative women with 5 cm tumors -- conclusion is that recurrence is low for women who don't choose radiation (key is node-negative):

http://jco.ascopubs.org/content/24/24/3927.full?si...

I seriously feel like I shift from one extreme to the other by the minute!

It looks like you had a large tumor yourself - did you ever end up having radiation?

Cowgirl13 · May 2014

Katie, if I were in your situation and I had a child, I would not hesitate on radiation. I would want to make sure i did everything I could.

Cougarlicious · May 2014

I had a 3cm tumor that shrunk but then grew on neoadjuvant chemo. Even though after my BMX no nodes were found to be involved, my MO, RO, and BS all recommended me for radiation. Even though I don't fit textbook criteria, they cited some recent studies where young women with larger tumors benefit from radiation even if they lacked node involvement. I have two kids (3 years and my chemo baby who is now 7 months) that I want to see grow up, so I chose to do it. I'm done with 25 radiation treatments now, and my foob is an angry red mess but I'm still grateful I'm doing it, as if a recurrence happened, I'd always be wondering if I really gave it my all. My only hesitation now is whether I need to do the final five boosts...RO is borderline on that but still leans for doing it due to the fact I did not get a complete pathological response.

ben50 · May 2014

Oooohhhhhh man I feel your pain!! We've been
living in the dreaded "gray area" for the last month or so and it
truly is awful. My wife, 26, triple positive, got a pCR from neoadjuvant
therapy, but because of the one original positive lymph node, we are also stuck
making this incredibly difficult decision. What has made this decision infinitely
more complicated is the fact that we are in our 20’s. With a pCR – even with
one original lymph node – I feel like everyone would recommended we forgo
radiation, however, because we’re young and the research shows cancer tends to
be more aggressive in younger patients – our medical team is split. My wife, on
the other hand, is afraid of secondary carcinomas from the radiation which
would have a longer time to develop (apparently your chance of getting a
secondary cancer from radiation –albeit very low- increases the further out you
get form your treatment). So it’s a total crapshoot and there is no “right”
answer. I think what it really comes down to is what YOU feel comfortable with
and what will help you sleep at night.

For our case, I’m 90% sure we are passing on
radiation at this time. Some reasons include:

the little research that does exist suggests
radiation holds limited benefit for stage I-II women who achieve a pCR at the
time of surgery (it’s soooo very under-researched),

radiation is not without its side effects (even
though our biggest fear is very, very rare, there is a price to pay),

you can only radiate ONCE – so with our current
good results in mind – having radiation as a weapon down the line is important,

we are fortunate to be able to receive other
adjuvant therapies

Now that’s our case and while we both fall into
the gray area, our circumstances being there are quite different. It doesn’t look
like you achieved a pCR, which is not completely surprising to me as your diagnosis
is Grade 2, ER+, which means you have a generally slower growing tumor which typically
do not respond to chemotherapy as dramatically. Obviously the biggest and best
news you have is clear lymph nodes and you’re opting for a BMX. With these variables
in mind, I would feel comfortable opting out of radiation. Because of the N0, I
believe you can feel pretty confident that it didn’t spread past your initial breast
(though knocking on wood – nothing is 100% with this disease) but that’s how I
would take it. Having a larger tumor matters less than lymph node involvement in
the long run and because your opting for complete removal, I would likely be
inclined to save radiation for down the road if necessary (knocking on wood again).
However, other members here likely have a different take on your situation than
me. I see a slower growing tumor (relatively speaking) with no lymph node involvement
and because I got rid of all the tissue (boobies), I could feel comfortable
with my decision (or my wife’s decision).

Sorry for such a long reply! In a weird way, it’s
almost refreshing to see someone going through the same challenge as us. Just
like us, there will be no right answer in your circumstances and because of
this, I believe you have to follow what you’re heart and gut tells you. Either
way, we all need to come to terms and live with the decisions we make about our
treatment.

Tinkerbells · June 2014

in the same boat and tormented. I had a positive intrammary node, but axilla was clear. Have had big chemo guns and will consult with ro to get opinion. Surgeon and oncologist inclined to skips rads, but I am terrified of recurrence and don't want to have regrets. This stupid intrammary nose has so little research I just don't know what to do! I'd love opinions from others, even if situation not exactly the same.

Thanks!

Sandra

Bikedog · June 2014

I had complete tumor response before my surgery. But my oncologist still insisted on radiation to the point of rushing me through my expansion because I shouldn't wait to start radiation. My initial tests staged me at 111c grade 3 with the node beneath my breastbone positive. I would rather have the doctors treat too aggressively then not enough.

yoga_girl · July 2014

Katie,

I was in the 'gray area' prior to and it weighs heavily on your soul.

All decisions are individual and very personal. You are the only person who can weigh all factors.

My prayers are with you as you move forward in your journey. Each decision you make will impact you and your family; be it good, not so good or neutral.

Be your own advocate, research, research, research. Find a cancer advocate who is a speaker and on an active research committee. Not everything is published where you can find it. Some issues and side effects are not published or documented because 'everyone is different and so is their experience'. I would rather know before a procedure so I can make informed decisions about my care and my life with cancer. Knowledge withholding is not a good option for us as patients who must live with the outcomes.

Sharing my story. . .my decisions

See more comments in Dry Eyes post under radiation before, during and after from other patients.

Jun 29, 2014 02:35PM yoga_girl wrote:

RADIATION - SCATTER - BREAST CANCER

Summary: Left side, one (1) inch from my heart; I chose to have prone, I looked for a national medical oncology doctor who had this specialized knowledge, as told/researched, published as best possible outcome with little damage to my heart and lung and other organs. Latest breaking technology available. The jury is still out on this outcome as I am now slowly climbing out of rads brain fog, documenting non standard reactions and side effects and researching like crazy.

You will find very little to nothing published on this topic. Most reference links say it's a myth. If you have to research clinical studies in other countries, do so, they are part of the international cancer research teams working to save lives worldwide, funded in part by all the grant money we see being collected from fund raising events, private and public contributors; city state and federal governments around the world.

If you signed a disclosure form to share your tissue and path results, your records are probably in this database linked by your local medical facility who is participating in the global research being collected.

http://www.iarc.fr/

International Agency for Research on Cancer

Global battle against cancer won’t be won with treatment alone. Effective prevention measures urgently needed to prevent cancer crisis

more of my story. . .and decisions

Rads waiting room; I asked other women in rads treatments with me, during our six weeks of sessions, they were all experiencing some form of scatter as described below. We were all told the same thing, you had it before, it is not a result of rads, it is from chemo, it is from thyroid issues, etc. Many of the women only had surgery and rads, no chemo. We all believed there was nothing we could do but endure it alone and reach out to each other for support on rads side effects that impact the issues identified below.

Yes; I was experiencing symptoms all through rads, but wasn't sure what it was. Can't blink, gets stuck, feels like sand, and is painful, eyes are crusty when waking up from sleep. Using same solution I was using while wearing contact lens, multipurpose solution that is sterile and buffered.

I did not receive IV chemo before or after surgery, only rads after surgery.

First time I reported it, Onc Rad Team said it was from chemo. I didn't have IV chemo. Oops had to go back and look at my chart to find easy answer to what what the cause. Then I was told I had these symptoms before cancer. I did not.

Next time I reported it, Onc Rad Team said it was my thyroid (blood tests were done, it was not my thyroid, ranges were normal).

Next time I reported it, Onc Rad Team said it was my supplements that were causing it. Told to end all supplements for six weeks. Confirmed, supplements were not the cause.

I was diagnosed with dry eyes, mouth and throat by my dentist five minutes into my 1st exam within three weeks of completing all rads. Direct result of rads treatment 'scatter' per my dentist. I see this doctor every six months or more often and he knows my mouth and throat area better than anyone. Confirmed by my dentist, scatter from rads. Confirmed by my primary care doctor, scatter from rads. Confirmed by my integrative doctor, scatter from rads. I am still dealing with all the same symptoms 5 months post rads.

Until my dentist and two other doctors confirmed what I was experiencing I was getting no where with answers to resolve the situation from my Med Onc Rads Team.

Med Onc Team would not see me regarding these issues due to Med Onc Rads Team still overseeing my care post rads.

Med Onc Rads Team would not deal with issues, stated it was a palliative doctor who needed to take on the issues and find solution.

Primary care doctor, took it on, agreed with dentist.

Integrative doctor, took it on, agreed with dentist and primary care doctor.

Then the research began on my end. . .

Side effects are different for everyone, but these are mine so I wanted to share what I have been diagnosed with and what is helping to me to cope as best I can.

Talk to your primary care, and/or integrative medical doctor. They will listen, they know exactly what you are going through and will assist as best they can to get you some type of resolution for symptoms on the palliative side. Be your own advocate, find another advocate who has knowledge about these topics, discuss options. Keep pushing forward with healing and managing pain.

•Oral mucositis (inflamed mucous membranes in the mouth).

•Salivary gland problems (after 30 minutes in a face down position during a rehab deep tissue session we have to stop so I can drink water to unglue my mouth that has no saliva to enable me to swallow).

•Change in taste. Very few things I can taste unless it is a strong taste.

Smell: unless it is a strong smell or offensive to my system, I can't smell it.

Hot/cold: I can't determine what is to cold or hot until it burns the inside of my mouth and the damage is done. I have to be very careful to guess the temp of food before eating other than room temp.

•Pain.

I have dehydration and it becomes difficult to eat properly with bleeding gums and virtually no saliva to start digesting food.

Talking for long periods of time is difficult, due to very little saliva and I lose my voice. Then I sound like a man with a deep voice (raspy), water doesn't really help.

Cancer treatments can cause mouth and throat problems, read on. . .

*****

This publication states protocol is only for patients with head and neck radiation, but as a breast patient I have had many of the side effects. Left breast, prone treatment, tumor bed one (1) inch from my heart, 730pm position growing along rib cage bone (was missed in mammo, I found the tumor within 30 days after receiving the letter that said nothing was detected your annual exam, was fine).

I've extracted the 'published' points on this topic from the NIH, NCI web page and posted below. Not all possible side effects from 'scatter' when being treated for breast cancer were discussed, shared, or advised by my medical teams (two different hospitals) using rads until AFTER treatments have started and AFTER you start asking about why you are experiencing so many side effects and what from. Actually, NO discussion was shared from any Onc Team about scatter potential.

http://www.cancer.gov/cancertopics/pdq/supportivecare/oralcomplications/Patient/page1/AllPages/Print

National Cancer Institute at the National Institutes of Health

Patient Version

Last Modified: 04/24/2014

Complications are new medical problems that occur during or after a disease, procedure, or treatment and that make recovery harder. The complications may be side effects of the disease or treatment, or they may
have other causes. Oral complications affect the mouth.

Cancer patients have a high risk of oral complications for a number of reasons:

Chemotherapy and radiation therapy slow or stop the growth of new cells.

These cancer treatments slow or stop the growth of fast growing cells, such as cancer cells. Normal cells in the lining of the mouth also grow quickly, so anticancer treatment can stop them from growing, too.
This slows down the ability of oral tissue to repair itself by making new cells.

Radiation therapy may directly damage and break down oral tissue, salivary glands, and bone.

Chemotherapy and radiation therapy upset the healthy balance of bacteria in the mouth.

There are many different kinds of bacteria in the mouth.
Some are helpful and some are harmful. Chemotherapy and radiation therapy may cause changes in the lining of the mouth and the salivary glands, which make saliva. This can upset the healthy balance of bacteria. These changes may lead to mouth sores, infections, and tooth decay.

This summary is about oral complications caused by chemotherapy and radiation
therapy.

The goals of oral and dental care are different before, during, and after cancer treatment:

•Before cancer treatment, the goal is to prepare for cancer treatment by treating existing oral problems.

•During cancer treatment, the goals are to prevent oral complications and manage problems that occur.

•After cancer treatment, the goals are to keep teeth and gums healthy and manage any long-term side effects of cancer and its treatment.

The most common oral complications from cancer treatment include the following:

•Oral mucositis (inflamed mucous membranes in the mouth).

•Infection.

•Salivary gland problems.

•Change in taste.

•Pain.

These complications can lead to other problems such as dehydration and malnutrition.

Cancer treatment can cause mouth and throat problems.

Complications of chemotherapy: Oral complications caused by chemotherapy include the
following:

•Inflammation and ulcers of the mucous membranes in the
stomach or intestines.

•Easy bleeding in the mouth.

•Nerve damage.

Complications of radiation therapy: Oral complications caused by radiation therapy to the head and neck include the following:

•Fibrosis (growth of fibrous tissue) in the mucous
membrane in the mouth.

•Tooth decay and gum disease.

•Breakdown of tissue in the area that receives radiation.

•Breakdown of bone in the area that receives radiation.

•Fibrosis of muscle in the area that receives radiation.

Complications caused by either chemotherapy or radiation therapy

The most common oral complications may be caused by either chemotherapy or radiation therapy. These include the following:

•Inflamed mucous membranes in the mouth.

•Infections in the mouth or that travel through the bloodstream. These can reach and affect cells all over the body.

•Taste changes.

•Dry mouth.

•Pain.

•Changes in dental growth and development in children.

•Malnutrition (not getting enough of the nutrients the
body needs to be healthy) caused by being unable to eat.

•Dehydration (not getting the amount of water the body
needs to be healthy) caused by being unable to drink.

•Tooth decay and gum disease.

Oral complications may be caused by the treatment itself (directly) or by side effects of the treatment (indirectly).

Radiation therapy can directly damage oral tissue, salivary glands, and bone. Areas treated may scar or waste away. Total-body radiation can cause permanent damage to the salivary glands. This can change
the way foods taste and cause dry mouth.

Slow healing and infection are indirect complications of cancer treatment. Both chemotherapy and radiation therapy can stop cells from dividing and slow the healing process in the mouth. Chemotherapy may decrease the number of white blood cells and weaken the immune system (the organs and cells that fight infection and disease). This makes it easier to get an infection.

Complications may be acute (short-term) or chronic (long-lasting).

Acute complications are ones that occur during treatment and then go away. Chemotherapy usually causes acute complications that heal after treatment ends.

Chronic complications are ones that continue or appear months to years after treatment ends. Radiation can cause acute complications but may also cause permanent tissue damage that puts you at a lifelong risk of
oral complications. The following chronic complications may continue after radiation therapy to the head or neck has ended:

•Dry mouth.

•Tooth decay.

•Infections.

•Taste changes.

•Problems in the mouth and jaw caused by loss of tissue and bone.

•Problems in the mouth and jaw caused by the growth of benign tumors in the skin and muscle.

lawyergirl · July 2014

Hi Katie,

I'm in a similar situation: had two positive nodes before chemo and after surgery (BMX + full axillary node dissection), pathology came back with clear nodes and primary tumor had shrunk in size. My radiation oncologist is recommending that I either proceed with radiation as the "standard of care" for younger women who have node involvement OR join a trial that is randomizing rads or no rads (http://clinicaltrials.gov/ct2/show/study/NCT01872975?show_locs=Y#locn). She made it clear that if I were to get a second opinion from a nearby cancer center, they would likely recommend no radiation for me.

This is another one of those tough treatment decisions for me (I also struggled with lumpectomy vs. mastectomy). I'm leaning towards choosing no radiation at this point, or possibly enrolling in the trial and hoping I get randomized to the no rads group. In addition to my concerns about radiation side effects, I really want to have my exchange surgery and be done with the tissue expanders sooner rather than later.

Good luck to you!

TB90 · July 2014

Hi Katie: Here is hoping you already made your decision and are happily on your way through whatever treatment path that you choose. Be at peace with your decision.

Anyone else is a radiation "gray area"?

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Study Confirms Radiation Boosts Breast Cancer Survival

Locoregional Radiotherapy in Patients With Breast Cancer Responding to Neoadjuvant Chemotherapy: A Paradigm for Treatment Individualization

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