Struggling with rads decision... Any advice?

mellee · January 2017

I had a BMX plus ALND in November. 2 out of 32 lymph nodes were positive: 1 small macromet (3mm) and 1 micromet (less than 2mm). Mammaprint came back low risk, so no chemo. But I will be taking tamoxifen. The only question left is radiation.

I've read a ton of research and had a couple of in-depth RO consults, but I still am having trouble making up my mind.

I fall into that dreaded grey area of 1-3 positive lymph nodes where the recommendations for rads are not at all clear cut. Current guidelines (http://ascopubs.org/doi/full/10.1200/JCO.2016.69.1...) are to "strongly consider" RT in general, but to look at the patient's specific situation, since some are at such a low risk of local recurrence that the toxicities of RT don't outweight the benefits.

The RO's I've spoken with say it's a tough call for me, but because of my age (40) I may want to consider it. However, I have a lot of factors in my favor that make the odds of local recurrence low: highly hormone positive, Grade 1 tumor, no lymphovascular invasion, small size of nodal metastasis, high ratio of negative to positive lymph nodes, no multifocality, etc. So I'm probably on the lower end of the risk spectrum in the 1-3 positive lymph node group.

I'm really torn. Part of me wants to do rads as an "insurance policy" (although insurance doesn't usually mess up the thing you're insuring). But I'm worried about all the risks (secondary cancer, lung damage, etc). Plus, I already have lymphedema from the ALND and am really scared about that getting worse. Also, it would pretty much guarantee I have to have future surgeries on the reconstructed breast.

Anyone else struggle with this? How did you make your decision?

Fearless59 · January 2017

Hi, Melee, am struggling, too. I had known DCIS, mastectomy 1/12/17. Path report found one mm invasive in the breast and 5mm invasive in one of 4 sentinal nodes. I was referred to both an onc and a radiation center and both would love to have me as a customer. I am so careful I do not even take things like aspirin. Took no pain killers at all after surgery. And these folks want me to put my life in their hands with poison/chemo/rads? It is just not what I planned. I just read a couple posts from a thread here, gals who regretted getting rads and it was pretty awful. One had her thyroid ruined.

There is a oncotype gene test for my cancer that I hope will help me decide by letting me know more about how that type of cancer behaves. Around 250 and insurance doesnt pay but I want that done even if out of pocket. I am sooooooo cautious, on one hand its nice to play it safe, all guns blazing against the threat of cancer, but these " guns" backfire too often and it is kind of a crapshoot!

Fearless

Fearless59 · January 2017

Fearless again.....

I am a brave person but, any doctor sort of has a built in conflict of interest, even tho I do trust mine. And if they tell you the side effects, even if they do not sound worried, and you sign the papers, they are kind of off the hook, whatever happens. I am pretty strong and likely to be in the group that does all right but, which threat is worse? The microscopic cancer cells that might be lurking, or the so-called treatments?

In addition to gathering more info per the above, I may try asking my body with kinesiology. Years ago I took a class on educational kinesiology where they asked the body things like whether it needed this mineral or that vitamin, whether it was allergic to this or that. The person helping would ask and then you would hold your arm out straight to the right, facing them, and they would pull down your arm using 2 fingers, and if it "locked" and stayed strong it was a yes, and if it was a wuss and went down easy, that was a "no." I have not used this technique for 25 years but I like to believe the body has some wisdom about what it needs. I would really not like it if I compromised my immune system unnecessarily.

I would like to know what percentage of people get the various side effects, both chemo and rads and that would help me decide too. But I have not found this yet. Still have a couple weeks to decide but its a rough decision, Im putting my life in my hands either way, and no guarantees for any of the three forks in the road.... nothing, rad, or chemo.

There is a computerized model where you plug in your age, diagnosis, surgery, etc. and it gives you the average added life that you get from chemo or rads or whatever. Mine said chemo statistically would buy me only about another six months in my case. But it costs like 30 grand. So I am looking at that and going, " it would be kind of out-ethics for me to ask Blue Cross to fork over 30 grand so I can live another six months." Thats pretty selfish. But at the moment I am about to toss the rads treatment offer also after knowing it could ruin your thyroid FOREVER. ugh. That's some scary stuff. And I have a 25-year old daughter, and a husband, and huge extended family that would be very wounded to lose me unnecessarily.

I became less worried after running into a lady in doc office who had both chemo and rads and it was her last day. She seemed perfectly fine and had very little issues with either.

Keep collecting info, is my offer of advice! Would love to talk more.

Fearless.

mellee · January 2017

Fearless, the Oncotype is totally worth it (or the Mammaprint, which is what I did). I am not doing chemo as a result of the test.

Fearless59 · February 2017

Thanks, KB870 for the link. It is after midnight but I will look tomorrow.

Mellee, thank you for your comment on the genetic item.

It is so annoying to be "stuck in a maybe." Ugh.

We want to hedge our bets in an effort to beat the risk, and to be healthy, but its kind of like a gamble like "the price is right". game show.......will there be a tropical vacation behind door number three or will there be a donkey pulling a cart full of horse manure?

Wildplaces · February 2017

Hello Mellee

I do not mean to pry...but I am trying to make a similar decision.

I have a bigger tumour, just under 5 cm IDC/DCIS. Solid clear margins - 1 out of 12 nodes - small macromet.

I have had dose dense chemotherapy and my ovaries out - now on AI. (wildly hormone positive tumour)

Two things:

1. It's unusual to have had 32 nodes out - do you mean 12-13??

2. If your operation was in November - they usually like to start radiation within 6 weeks post chemo...

For me I have had one RO state overall the risks are about the same as the potential benefit.

I was quoted a 10% local recurrence rate with a benefit of 2.5% - ie the rads would drop the potential local recurrence to 7.5%.

I was happy to run with the "rest of the programme" and skip the rads when my second opinion oncologist ( on a different matter) suggested I needed radiation - so I am seeking a second RO opinion....

Are closer to deciding your course for now?

mellee · February 2017

Hey Wildplaces,

1. No, that was not a typo. I had 32 lymph nodes removed! 5 sentinel nodes and then an additional 27 in the ALND. It's definitely a lot! I was told that I may have more lymph nodes than normal, or perhaps my pathologist was more thorough than most (they can miss nodes in the dissection). But I definitely am feeling it, as I have early stage lymphedema. It's a huge bummer, and one reason I'm leaning against rads. Also, there is research that shows that nodal ratio (the ratio of positive nodes to total removed) is a prognostic factor that can be used when making radiation decisions. Mine is good as I had only 2 positive out out 32 total. Yours at 1/13 is good, too.

2. I didn't do chemo (Mammaprint test came back low risk), but I have heard that if doing rads alone, the optimum time frame to start is 3-6 weeks after surgery. I am well beyond that, but I have a wound complication that is delaying things. Can't do rads until it's healed. So that's another factor against rads. By the time I can get it, how effective will it be? Currently trying to get an answer on that.

All in all, I'm leaning against it. There appears to be a slight survival benefit if you do rads, but it's not a big one. When going in for your second opinion, I would definitely recommend going over the new 2016 recommendations: http://ascopubs.org/doi/full/10.1200/JCO.2016.69.1...

It really goes into depth about the various factors you should consider when making your decision. Let me know how the consult goes. Would love to hear what the RO says!

Wildplaces · February 2017

Thank you - I had not read them - very useful.

I was aware of the Lancet meta-analysis that started all this and prompted the American statement - it's free access but you need a clear head to go through the data.

http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(14)60488-8/abstract

It makes it all a bit of a bummer because the studies were 1964-1986 and they do not exactly specify what was treated with radiation. You will see rates of recurrence that are much higher then what is presently quoted.

The chest wall is the most common site of local recurrence.

I finished my chemotherapy 19th of December so I am really stretching the "optimal time zone".

Having said that I am happy to have had some time to recoup and regroup.

( I thought it was within 7 months post surgery of chemo is involved and no later then 8- 12 weeks for surgery only - but obviously the sooner the better in terms of absolute benefit)

The second RO is away and I cannot get in until 14th of Feb - I could go and see someone else from the group but I know they would probably say yes to rads - it takes a fair bit of clinical experience to suss out the subsets where the risk of recurrence does not outweigh the potential toxicity....

I am trying hard to not overthink it or lean either way - I'll wait to see what she says and will post and let you know.

CCtoo · February 2017

I had lumpectomy in Oct 2016, and decided against rads as did not make sense and my diagnosis was same as yours with one of three nodes positive. I also am more afraid of radiation..Damage to heart and lungs.....To me, worse than recurrence. Read S. Somers book Breakthrough...Fantastic...She had breast cancer... A chapter in the book by Dr Khalid Mahmud, oncologist is extremely explanatory of all of this. Wrote a book too. I take selenium, etc. to build immune system....The key to preventing recurrence.

Wildplaces · February 2017

hello CCtoo,

Thank you for the book recommendation.

I read a little from your posts because I was surprised you had a lumpectomy and little further treatment besides natural measures to increase immunity.
I am 48 - please note that I had a full mastectomy and level two axillary clearance ( gobble speak for a fairly extensive axillary dissection), my ovaries out, 8 rounds of chemo dose dense and at a minimum I take daily
- Arimidex
- vit d /calcium
- aspirin 150 mg/day
- probiotics/ plus natural yoghurt
- turmeric - with bioperine
- Brazil nuts for selenium
I also walk briskly 30 minutes daily and swim after school with my son.

I understand that you are 80 and do not want the bother of radiation.

A couple of things that should not cause you much discomfort:

- make sure that is your only breast lesion - a breast MRI should help and there is no radiation

- if your tumour is oestrogen positive - Arimidex is a good drug!!
- it blocks the conversion of adrenal hormones (which you have at any age) to estradiol by acting on an enzyme called aromatase
- you still have oestrogen because you have adrenals in your body
- this enzyme is present in cancer tissue

The problems you will have with Arimidex are joint and muscle pain, morning stiffness which will be worse if you have a bit of arthritis. This is treatable with some natural supplements and daily walks.
Speak to your oncologist about the dose - it might be possible to take half dose (0.5mg/day) - it would still be better then you not taking anything.

If you can not tolerate Arimidex try Aromasin (another anti hormonal).

Please make sure your cholesterol and blood sugar levels are well controlled.

I also noted your comment on iodine and sodium bicarbonate.
Kelp, sea weed has been associated with lower incidence of breast cancer as shown by epidemiological work in Japanese women.
An alkaline food diet ( used in body building ) particularly at night (when cancers tend to be more active) will not cure cancer but may have some benefit. The potential problem with sodium bicarbonate is the sodium ( ie salt in your diet) effectively salt added to your diet. So if you take bicabonate with water - watch the salt intake in the rest of your diet.
😊

Take good care!!

Amandab1234 · February 2017

Mellee,

Can you tell me what prompted so many nodes removed? Did they do the sentinel node test and then took 4 nodes past each sentinel? I'm having a unilateral masctectomy march 2nd and worried about the nodes. I had a node biopsy, only one swollen, but it was negative. Also did you make your decision on radiation

mellee · February 2017

Amanda, my surgeon performed a standard sentinel node biopsy, followed by a Level I and II ALND. There was no purposeful attempt to remove such a large number of nodes.

With the sentinel node biopsy, they don't just remove a node, they remove a section of tissue, and in my case, that tissue specimen contained 5 lymph nodes by itself (2 of which were positive, 1 macromets, 1 micromets). Then the tissue they removed for the ALND had another 27 nodes, all negative.

I asked my dad (who is a retired breast surgeon) why the number was so high. He said that a lot of it depends on how thorough your pathologist is. They have to dissect the tissue that is sent to them from surgery, and it's easy to miss lymph nodes. My pathology report was the lengthiest he's ever seen so I think I just got an extremely diligent pathologist.

Apparently, another factor than can influence the number of nodes retrieved is the surgery itself (and how closely the surgeon follows protocol in retrieving good tissue specimens).

The following study talks a little bit about both: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC17703...

As for rads, I've decided that, for me, the risks don't outweigh the benefits. The ROs I spoke to wouldn't radiate my axillary nodes anyways. Plus, I'm still having issues with the surgical incision on my cancer side. I can't get radiation until it's healed, and I'm already moving out of the optimum radiation window. It wasn't an easy call, but I'm comfortable with my decision.

ElaineTherese · February 2017

Amandab,

Everyone has a different number of Levels I and II lymphnodes. Some have fewer (say 11 nodes); others like mellee, have many, in her case 32. I had 20 Levels 1 and II lymphnodes, so that's what was removed.

mellee,

Radiation is localized treatment; hormonal therapy is systemic. If I were you, I would focus on the Tamoxifen (which I hope you are tolerating well). Also, since you already have early lymphedema, I wouldn't do rads if I were you. I have been lucky so far re: lymphedema, but since it can develop any time, I am always on alert.

mellee · February 2017

Regarding sentinel node biopsy and number of nodes removed, this study was interesting:

How Many Sentinel Lymph Nodes Are Enough for Accurate Axillary Staging in T1-2 Breast Cancer? -https://www.ncbi.nlm.nih.gov/pmc/articles/PMC32689...

It's a limited study of only 328 patients, so it's not the definitive answer. But they found a pretty high false negative rate (FNR) when just one sentinel node was removed:

26.6% FNR for a single SLN
8.0% FNR for two
11.1% FNR for three.
0% FNR for four or more.

mellee · February 2017

Thanks, Elaine. The number of lymph nodes does vary between people and is another factor in how many nodes they find during these procedures. I guess I have a lot!

Good advice on the tamoxifen! I'm 100% ER+ so it's my best defense. I have to admit that the LE issue was a big factor for me as well. I do not want it to get worse!

Struggling with rads decision... Any advice?

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