Anyone here with another primary cancer diagnosis??
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Hi chronic. I will try to answer your questions...
1. I’m 48 now. I was 30 with the colon cancer and 42 with the breast cancer. Both 20 years younger than average so aging wasn’t a factor for me. I had BRCA testing through Myriad (back when the had the monopoly) and 40 other genes tested with the Broca panel from U of Washington - no mutations detected.
2. I am not a veteran. In addition to the issues you posted, there’s also an acknowledgment from the military that people stationed at Camp Lejune (staff and dependents) have a known risk for breast cancer and can receive compensation of diagnosed. I have a distant relative that was exposed to Agent Orange and he ended up with testicular cancer that was treated more than 20 years ago and he is fine today.
3. I was at a great BMI at both diagnoses. My mother smoked til I was 12 so maybe that was a factor (but my older brother has never had cancer). I got my period at 11 which is considered a risk factor. I was on birth control pills for many years which might be a link (but is considered protective for ovarian and uterine cancer she which is good). I had two pregnancies after 30 (bad) and breastfed each for just over a year (good).
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It's 4:17 am and I can barely sleep since I was given the BC diagnosis. A few weeks before the diagnosis I started to feel back pain. The pain/discomfort continues. It tavels from my back to my lower right abdomen area. Even though I was diagnosed with Stage I BC, negative nodes, I'm terrified I might have it somewhere else. My BS has been very dismissive. I am having my 1st appointment with the oncologist in 2 weeks to discuss Oncotype and treatment options. I want to have this pain checked and I'm wondering which types of test I should request to rule out cancer in other areas.
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Generally an MRI will show if there is any cancer in other parts of your body. But that pain needs to be persistent and progressive over two weeks before you should worry. Given that this is about the time you will be seeing your onc, you should bring this up then if pain persists. Meanwhile, don't assume the worst, even though I fully understand this is hard.
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I agree with traveltext. Keep notes about your symptoms, not to obsess about it, but so you have some objective data when you see your MO. Try to eat, sleep, exercise etc. Trying to manage the stress (for me it was long walks) will help you.feel better as you sort out all the options. Keep us posted.
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I'm new to this group. I am so sorry to read of your so many challenges. i was dx W/ BC in April 2017, mastectomy in May. October 2017 I was dx with melanoma. (Acral lentiginous) So I have two synchronous primaries. Oncologist says it's an unfortunate coincidence. Nodes are clear both sentinel for breast and for foot. Dr says no need for further testing. Thoughts? Also, DSW1976, how are you? I'm wondering what you've found about Acral Lentiginous?
Best thoughts to all
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Dunes - sorry to have to welcome you here. Melanoma on the sole of the foot is pretty rare isn’t it? Was your surgery quite extensive or not too bad
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dunes, sorry, but welcome!
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thank you folks. My melanoma is actually on top of foot between toes -stage 2, so no lymph involvement. Wide excision to get clear margins 1 month ago and the skin graft last week. No big pain. I had follow up done on my breast reconstruction at the same time. Not so bad , except I had a wound vac on foot and drains on breast. Mobility suffers!
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Have you all read thisNew Yorker piece? Makes me wonder what's in "my soil".
https://www.google.com/amp/s/www.newyorker.com/magazine/2017/09/11/cancers-invasion-equation/amp
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chronicpain, how big was your nodule when you had it biopsied and why do they do iodine radioactive iodine treatment if your thyroid has been removed? Is it to the area like breast radiation? Is it one treatment? And how much levothyroxine do they put you on? Is the thyroidectomy an outpatient procedure? I see the thyroid surgeon in a few weeks. Thanks.
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Hi chronic, I have some perspective for you on the genetics topic and ages of diagnosis.
My mom and I have identical types of braca 2 estrogen positive her2- with an unidentified mutation they don't know what is means because they don't know what it does.,
Our estrogen fueled kind of cancer ups the risk for ovarian cancer so they tried to get mom and i to schedule additional surgery for later removal despite the fact that they are totally healthy organs in both of us!
My mom was diagnosed 3 years ago in her late 60s and had a lumpectomy with chemotherapy and radiation and is still cancer free!
I am using the same team of doctors that cured her when I was diagnosed in June with a more aggressive case at age 41. The genetics department confirming my diagnosis made it impossible for any insurance company to deny covering the test like they did with my mom to our 2 first cousins that are currently in chemotherapy for stage 3 breast cancer at the same time within a single generation.
We are not a military family but my sisters husband just retired a captain in the navy,Our father was in the reserves.
We have always been on beaches in the summer, and there are more people asking geographic questions for people living south of documented plumes of toxic waste so a great question we still have no solid answer for is... At what point is environmental circumstance no longer simply coincidental?
Turns out it depends on the state you live in, California actually set the standards for most states with a landmark case. I LOVE Erin Brockivitch because that movie really puts it in perspective when people with repeated health problems keep getting blamed for the symptoms they report suffering from!
The first line of retaliation from the medical community for the last few decades is when the symptoms being reported can't be conveniently dismissed they blame the patient or whatever moral failings they can dig up to discourage any further inquiries.
My aunt never smoked a day in her life but she died of lung cancer. I am a smoker with cancer, and after ALL the diagnostics I have cleared it does not show anything close to what you would expect my lungs to look like! Of all the reasons I got cancer, THAT wasn't it!
Nobody likes to admit how little we actually know about the ingredients in cigarettes, or why that fact makes it impossible to successfully quit! It's not just nicotine that addicted people crave it's the brand itself!
Every consoumable product regulated and taxed by the government MUST list the exact contents per portion so HOW is the tobacco industry able to claim trademark secrets to avoid disclosing the exact components like a toxicology report would? What's is the chemical difference between Marlboro or camel? Telling consumers it's bad for them with giant warning labels but not WHY is no more of a solution than sin tax!
Nobody could tell me the exact interaction list for chemicals in cigarettes reacting to chemotherapy drugs I was on either so that was the last anti smoking lecture I got when in treatment. I WANT to quit, but guilting me for having an addiction at my weakest point was a cheap shot I thought.
I want to make this process easier by being honest about my experiences and practical as I can manage so I like to keep my healthcare team the same way. We keep it professional by not letting it get personal and keeping the frustration focused on the outdated industry of care guidelines and who exactly ISNT doing the job of validating new treatments to be covered by insurance!
One story at a time and we will find out the truth together because it's a small small world after all!
I just got my skin saving nipple saving double mastectomy breast reconstruction surgery scheduled for the same day as tumor removal on january 9!!!
I couldn't be more excited about it all being possible for me, and will let you know how I heal up between surgeries.
Happy holidays all and thanks for listening
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Marijen wrote:
"19 hours ago marijen wrote:
chronicpain, how big was your nodule when you had it biopsied and why do they do iodine radioactive iodine treatment if your thyroid has been removed? Is it to the area like breast radiation? Is it one treatment? And how much levothyroxine do they put you on? Is the thyroidectomy an outpatient procedure? I see the thyroid surgeon in a few weeks. Thanks."
I am not the one who had a thyroid nodule biopsied, must be someone else, but for various reasons I know a lot about thyroid. The American Thyroid Association recently updated criteria for biopsy of nodules seen on ultrasound ( often incidentally detected when people get their head and neck imaged for other reasons like carotid ultrasound, sinus CT, or upper thorax imaging). Most nodules under 1cm, absent a high risk for CA like prior head and neck radiation, do not get biopsied, many are just too small and have no suspicious features and are simply monitored with serial ultrasound. Most nodules are very benign and not CA and even more likely so in patients whose thyroid is overactive.
If a biopsy shows "cancer" on a small nodule, most commonly it is the slow-growing and truly curable papillary thyroid CA (PTC) and the trend is just to do a hemithyroidectomy, leave the other half in, and do no iodine ablation. PTC is such a slow-growing tumor that if small and without bad shape features, some experts are even pushing to stop calling it cancer. If larger PTC, they take the whole thyroid out ( typically one day in the hospital, general anesthesia), less commonly a long outpatient day. Only surgeons trained in lots of thyroid surgery should do them, endocrine neck surgery should be their specialty, to avoid injury to recurrent laryngeal nerve which could rarely cause hoarseness, and minimize scar.
If iodine ablation is done it is NOT a big stressful drawn out deal like BC radiation. It is done in cases where the whole thyroid was removed for papillary or follicular thyroid CA, e.g., in bigger tumors or in follicular types or for other criteria like multicentric disease, outpatient, one low dose, almost no ( or very minor) acute side effects, to make sure all the hidden tumor cells are killed. Major long term side effect of taking thyroid out and ablation is permanent hypothyroidism, i,e,, you need a pill a day forever. Dose is adjusted based on age and patient weight and tumor state monitoring with a blood test called thyroglobulin (TG) for PTC and follicular. If the whole thyroid is gone, there should be no TG in the blood. If there is, tumor has recurred, or never been killed. Initially they "suppress" the TSH, i.e, make you a little hyperthyroid, but after time passes and there is no rise in TG and US of neck is ok over years, they just replace to normal.
The rarer thyroid cancers medullaryand anaplastic are very different.
Many patients just have lots of big nodules (multinodular goiter) which if big can cause swallowing or breathing problems or apnea so some people want the thyroid out, and over time some of them can become cancerous so if not removed constant US and periodic biopsies are needed.
Good luck at your appt!
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Marine has it right. There are 5 abnormal thyroid cell types. Upon biopsy, 2 are able to be DX as cancer, 2 as benign. The other is not able to be diagnosed until.it is removed. That one is called Hurthle Cell neoplasm. I had it on one side 15 yrs ago. That side was removed and it as benign. Other side started growing quite large, and I had it removed after my.BC and endometrial cancer were removed. It was benign too. I take synthroid every day. No big deal. I have the best surgeon in the area who did my thyroid, then breast. I am very thankful for them!
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Thank you chronicpain and everyone for the detailed thyroid information. My endocrinologist said my thyroid is "dead" so I'm worried.... right now all I get is the TSH test and the T3 uptake test. chronicpain, I must have read someone else's post previous. But thanks!
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Marijen: If your doc said you have a dead" thyroid he likely just means it is not producing enough thyroid hormone ( for various possible reasons) and you need replacement, which can be done to goal and to normal metabolism levels with levothyroxine ( synthroid) In most cases TSH target is 1-2 ( if there is no active or recent thyroid cancer, and no angina or active heart disease), for primary thyroid failure.
Less than 1 per cent have secondary thyroid failure ( from pituitary disease or radiation, brain injuries) and in those docs should look at free T4, not TSH, to decide how much to replace you with.
Compared with BC management, thyroid replacement is pretty easy unless the doc is not paying attention, in which case ask for an endocrinology comsult.
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Oh I’ve been on levothyroxine since 2001 and probably had hypo ten years before that undiagnosed. Couldn’t get a doctor to listen to my symptons. But now I find it’s dissolving back into my body, attacked by my autoimmune system. Hashimoto’s. I sure hope it’s not the pituitary because that has other functions, right? No brain radiation but lots of chest xrays due to pneumonia.I saw a picture, it was rust colored? Like sepia. It did look dead
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Hashimoto's thyroditis is the most common non-surgical cause of permanent primary hypothyroidism requiring synthroid replacement. Though autoimmune in origin, it CAN be replaced to normal. Make sure your TSH is at goal, at least under 5 preferably is 1-2 ( tsh goes down as replacement levels rise, reciprocally). Hashi patients do not typically have related pituitary disease ( very, very rare exceptions)
Some Hashi patients also have autoimmune b12 deficiency, easy to treat with an oral b12 supplement, so if you have not had a level checked, would do that too.
If you are not confident your primary is managing your thyroid correctly, ask for an endocrinology referral to give it an overview. He may also find other less common endocrine issues, if he is any good.
Best,
CP
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marijen- yes thyroidectomy surgery can be done outpatient but may be 1 night stay. If you’re already in synthroid/levothyroxine, odds are you’ll continue with your current rise and doc will want to test levels in a couple months to ensure no increase/decrease is required. Good luck!!
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Thanks Lula and chronicpain. I take B complex 100% dv. Hope it's not too much. Endocrinologist has yieled to thyroid surgeon for now
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Hi All, I just found this forum so I thought to chime in. I was diagnosed with DCIS, possibly invasive, on the left breast in November. The MRI biopsy showed radical schlerosing lesion, a benign condition on the right. The BS wanted to do a full surgical biopsy to remove the benign spot just to make sure nothing was hiding under it. Given my dense breasts, I decided to have BMX and immediate DIEP reconstruction.
As part of the Preop for DIEP, the PS ordered a CT angiogram. The second shoe dropped with the call at 9AM December 26 letting me know that I have a 3cm tumor on the right kidney. So after an interminable wait for an appointment, I finally saw the Kidney surgeon on Jan 4. Luckily, he feels there is no relation between breast and kidney. It’s just an unfortunate circumstance that they both are discovered at the same time.
I just received the PET results yesterday. Everything is clear, except for the known issues. All the docs had their powwow and decided that the BMX should go first, but no immediate DIEP. It is too invasive a surgery when I’ll need a partial nephrectomy as soon as I’ve recovered sufficiently from the BMX. So now I have BMX on Jan 30 and kidney surgery, as yet unscheduled
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Hang in there Maggie! My friend had Kidney CA and after surgery he was considered clear. He is over 10 years post, and no sign of disease.
Are you going to have expanders placed? I am sure you have a lot of questions. Keep us posted on how you are doing!
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2FUN, thanks for your encouraging words. On Monday, I have to let my plastic surgeon know which reconstruction route I'd prefer, knowing that he'll make the final decision during the surgery. He still feels that I am a candidate for direct-to-implants so I am leaning in that direction. Knowing that the kidney cancer surgery is looming, I just don't think I'm mentally ready to go the expander route with DIEP down the road. When possible, my PS prefers the prepectoral implants/expanders. It is certainly appealing to think that I will wake up from the mastectomy and have something already there and can move on to the next steps.
My kidney surgeon's wife is a breast surgeon (though she's not my doctor) so he is very familiar with breast cancer and reconstruction options. He pretty well summed it up when he told me, "the primary focus should be on treating the cancers".
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I have a pre pectoral implant. It's pretty realistic looking. Pretty comfortable, and way easier of a surgery and recovery than DIEP. All these surgeries really wear you out, so my advise is to minimize the intensity of your surgeries.
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2FUN, I really appreciate your perspective. It doesn’t seem as if there are many women on these forums that have prepectoral. If I could ask, did you have expander first? Also, do you have round or teardrop?
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I had an expander first. I honestly do not know if I have a teardrop or not. PS told me he would select the implant that matched the non cancer side when he was in the OR.
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I had the preop for the BMX, sentinel node biopsy, and reconstruction yesterday. My preference is Direct-to-Implants to get the breast surgery over, but the PS makes the final decision dependent on what he sees during the mastectomy. My BS wants a 6 week recovery before the kidney surgeon gets his turn. She wants to make sure that the chest area has healed so there's no chance of infection from the nephrectomy.
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I hope all goes well with this next surgery Maggie. Please let us know how it all went when you feel up to it.
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ekker, thank you. My bilateral mastectomy is Tuesday. One of the women on the January, 2018 Surgery Group thread in the "Surgery: Before, During, and After" forum sent updates from the recovery room. I don't have that much fortitude, but she is an inspiration:)
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No rush! We will all still be here
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