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The "Outlier" persists....

oldbeauty
Posts: 316
Joined: May 2012

Good day, Ladies.  I am posting today mostly because I do think it help others newly diagnosed to hear life experiences that challenge the generalized statistics that we all know and dislike.

I am a 15-year survivor of endometrioid adenocarcinoma who has been up to bat three times so far in the treatment sphere, likely heading to another at bat.  I seem never to have fit into the generalized literature about this disease.  I was early stage, "garden variety," histology, with frontline treatment in 2005 that was hysterectomy and external beam radiation.  I was assured I was "cured," and therefore spared brachytherapy.  Only I wasn't.  I recurred in 2012 and was told I'd likely expire within 12 months.  I received "palliative" care--more radiation to a malignant para-aortic node that was causing debilitating leg pain, and placed on high-dose progesterone.  Scattered lesions (not biopsied) in my lungs resolved along with the para-aortic node and by August 2014, I was NED.  So, I did not expire as predicted. Yay!!!  I recurred again in December 2016 with the discovery of several small nodules/lesions in both lungs.  These were not biopsied, but my new oncologist said he presumed they were malignant and recommended I submit to chemo, which I did for most of 2017 (12 rounds altogether).  At the end, I was NED but was told I likely would recur within a relatively short period of time.  At the end of 2018, one of my caregivers who believes that "peace of mind" is a medically necessary condition ordered a set of CTs, and we found a single pulmonary nodule in my lower left lobe.  It was 4 mm at detection, and 2 years later it has slowly grown to 10 mm.  Maybe it's malignant, maybe not.  Who knows?  It's still too small to biopsy reliably, and it's appearance is not susceptible to any rigorous analyis.  All we know is that it is changing.  Malignant tumors can be expected to double in size in 4 months; again, I am an outlier and happy to be one.

I want to give a shout out to Donna Faye, whose wisdom is awesome.  I channeled my inner Donna Faye this time around and I managed to remain serene in the face of "scanxiety."  Donna Faye counsel that thinking of CTs as your friend, and not your invitation to meet the Grim Reaper, is good advice.  I think I finally have come to internalize that CTs are a reliable early-warning system, and I should welcome them because I do believe that I still have options to manage this disease.

I saw my oncologist today.  I like her because she will respond thoughtfully to inquiries but she will not be drawn into speculation.  She can't say that Metformin is working for me, but she is willing to believe that it might be what is controlling the disease. The node is too small to make any conclusions about, and, while she says she finds it "hopeful" that there is still just one node after two years time, we are not yet out of the woods.  We will wait another 6 months and scan again, and hope that we will have entered a better phase in our battle with COVID if it looks then like we should do something.  Right now, she is not inclined to do more than wait and see.

I did ask her whether the surgeon she would refer me to if a biopsy showed a malignancy would see me now for a pre-surgical consult.  My reasoning is that if my history more probably than not supports an assumption that the node is malignant, it might be reasonable to simply send me for surgery and take a chunk out of the lung so that we can do the pathology and genomic/genetic testing to see what we are dealing with.  To me, to wait is to risk more nodules appearing which then would preclude surgery as an option.  She told me that was a reasonable option...but not during COVID.  Hospitalizations are increasing here, such that the Womens Hospital where the Womens Cancer Center is (within a large, multi-facility university research/treatment center) has had to open a wing for the overflow of COVID patients.  She said we needed to be conservative; that what I would have is a wedge resection and I should consider it major surgery with the possibility of complications and admission to the hospital or a convalescent facility.  She felt it was much too risky to expose me to that possibility; that she would feel much better with another 6 month wait and see.  But I was encouraged that she did not reject my analysis out of hand.  After all, women have prophylactic mastectomies and hysterectomies so why shouldn't I ask for a wedge resection without waiting for the node to get big enough to biopsy.  Were it not for COVID, this is what I'd be advocating for now.

So, I remain positive.  I feel well so I am well.  I am a proud outlier.  I wasn't cured, and I did not die within a year, and I did not definitively recur quickly after chemo.  You never know.  I do however, agree, as I've said many times, with takingcontrol58 and others who advocate trying to identify what your pre-diagnosis risk factors were and do what you can to change them to support a healthy body.  For me, it was to get moving, get control of my diet, fight for a Metformin prescription and work with a functional medicine physician to identify deficiencies in vitamins, minerals, and other substances that support healthy cell function.  

My story may reasonate most with those who share my histology, but I know there are others here with UPSC and MMMT who have defied the odds and also stand for the proposition that we all are a Statistic of One.  So, take care all.  Be vigilant and commit to engaging with and enjoying life.

Happy Thanksgiving.  Best wishes, Oldbeauty

MAbound
Posts: 1153
Joined: Jun 2016

You have such a good head on your shoulders and your story when added to those of others sheds a light on the path that many are currently blazing for themselves. Cancer is not fun, but neither is it hopeless. That can't be said often enough. Our stories, together, do so much to help ourselves as well as each other. You just never know when what you have to share is going to be just what someone else needs to hear. You were here for me when I was a newbie and I am so glad that you are still here and still so generously sharing your wisdom. Thank you!

oldbeauty
Posts: 316
Joined: May 2012

Thanks, MABound.  I agree this site is invaluable for its free trade in info.  For example, Fluff's recent thread "Symptoms," asking for input about experiences that began one's journey to diagnosis, is quite useful.  It would appear that pain is a frequent complaint, which is useful for women to hear in order to overcome objections about something being "normal" for women, or worse, "all in your head." Best wishes, Oldbeauty 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2905
Joined: Mar 2013

Thanks oldbeauty!  "channeled my inner Donna Faye"....LOVE IT!

oldbeauty, so it appears you found the chat during your first recurrence.  That is very interesting to me.  I think how I wish I had found it before I went through any treatment, and at least now I know where to point anyone when they come and tell me they have cancer.  There are a lot of strong people here, all you have to do is read everything they have been through, but it is clear we need the shoulders of those strong people sometimes too. 

oldbeauty
Posts: 316
Joined: May 2012

NoTime, I too wish I'd found this site back in 2005 so that I'd have known to have my surgery done by a gyn oncologist and not a regular OB/Gyn who chose an open surgery with an incision that precluded "gold standard" sentinel node sampling that might have found invasion to that para-aortic node before I suffered a distant metastisis.  But "meeting" takingcontrol58 spurred me on to ask for Metformin, and I fired my chemo onc who refused to write me a prescription (hugely ironic that this doc was in charge of my provider's participation in the clinical trial that paired Metformin with Carbo/Taxol). So many ladies here have made it their business to study this disease and share their discoveries.  I feel a great debt of gratitude for the education I've received here.  Just as much, though, is the emotional support available that can help each of us better fight the demon of despair.  Best wishes, Oldbeauty

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Donna Faye
Posts: 430
Joined: Jan 2017

Such words of wisdom from OB!  My sister-in-law, a nurse, says I don't do cancer like anyone she has seen. I think that is true for each of us. One treatment works for me but not for you. Thankfully we are getting more and more options. I have learned one can live with cancer. I have for 30 years of off and on. I was lucky to have CT scans that found the cancer early each time and kept me kicking. Follow OB's advice - stay positive - drink deeply of life each day - dance like no one is watching! Enjoy giving thanks with just your close group this year - wear masks and say Hello from a distance.

xoxo Donna Faye

oldbeauty
Posts: 316
Joined: May 2012

You are a remarkable woman.  Peace and best wishes, Oldbeauty

Fridays Child
Posts: 214
Joined: Jul 2019

Oldbeauty, I, too, am an outlier.  My original diagnosis in 2012 was endometrioid adenocarcinoma, stage 1a, Grade 1.  Hysterectomy followed by brachytherapy.  No evidence of disease for 6 years.  Then they found a pelvic mass that invaded my hip joint and spread to both lungs.  The statistics available at the time were not encouraging, but also not real  current.  We did low dose carbo/taxol with concurrent radiation, followed by full dose carbo/taxol.  Good results in general, but have not achieved NED status.  Was on letrozole for about 9 months, then switched to megestrol.  They say I could live a long time managing this as a chronic disease, but I'm still hopeful that some day we can get rid of it.  Almost three years later I'm doing pretty well.  For now I'm thankful to be here, to be able to get around, help with my grandchildren, spend time with my husband. 

Happy Thanksgiving to all!

oldbeauty
Posts: 316
Joined: May 2012

See, we're full of glad tidings today. I do hope we oldtimers do provide a measure of relief and hopefulness to the newly diagnosed.  That we all begin with terror and through our solidarity and companionship here we can migrate toward healthier ways of managing the stresses that we all are subject to.  Best wishes, Oldbeauty

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1801
Joined: Jun 2015

Thank you Old Beauty for this post and for all of the comments that followed. We are so lucky to have this forum that enables us to come together to share information, obtain support when needed and build such wonderful, positive relationships with each other.  I remember how afraid I was 5 years ago and how calm I became after spending a night reading all of the posts that were available. 

I hope your nodules stay small and that you are able to get that surgery in a safe environment next year. So glad you are an Outlier! :-)

Love and Hugs to All!

Cindi

oldbeauty
Posts: 316
Joined: May 2012

I agree, this site is a life-saver.  And, I had a consultation today with my wellness/survivorship physician, who also is an oncologist.  She urged me to go ahead and seek a pre-surgical consult with the surgical oncologist she and my gyn oncologist recommend.  She says the longer this very slow growth continues, the most she's willing to suspect it could be nothing.  She said this surgeon is a lovely, caring doctor who has seen so many images of nodules over the years that he may well have something to say about its appearance over time.  And, she said just because now might not be the best time to do what I have in mind, it doesn't mean that if the surgeon and I think it should be done now that it can't be done safely.  So, I will proceed with seeking the consult.  At least I can decide whether I think we're a good fit.  Best wishes, Oldbeauty

cmb's picture
cmb
Posts: 730
Joined: Jan 2018

Oldbeauty,

So glad you took the time to document your experience so thoroughly. It's a wonderful resource for those dealing with recurrences now and those who might in the future as you show that (1) even the "common" form of uterine cancer can come back later and (2) recurrences aren't always fatal.

Thanks for sharing!

oldbeauty
Posts: 316
Joined: May 2012

Thank you, cmb. I am humbled by your own efforts to organize our site for easy reference and all the info about your own history that you share.  Best wishes, Oldbeauty

cmb's picture
cmb
Posts: 730
Joined: Jan 2018

Like others, I'm deeply appreciative of women like yourself who continue to participate on this board for so many years. I'm sorry that I didn't find my way here until I was done with treatment. But we all bring something special to this board. I'm happy to contribute where I can.

jan9wils's picture
jan9wils
Posts: 164
Joined: Mar 2017

So I had a little spot on my lung that showed on the ct scan just prior to my hysterectomy in 2014. My gyn/onc consulted with a pulminary specialist who saw me while I was still in the hospital. He thought it was likely nothing, possibly scar tissue from bronchitis or pneumonia I had in the past.  I was diagnosed 1B stage 2 endometriod adenocarcinoma. I had external radiation and brachytherapy. But the pulminary doc wanted to follow up with me annually. Which I did. I had recurred to my abdomen, had chemo, ct scan still showed the lung nodule which was still to small to biopsy. I recurred again, had surgery and a follow up PET scan showed some activity in my lung, and the nodule had grown a bit. My gyn/onc didn't iike it and urged me to see the pulminary doc again. This was in the fall of 2017. The pulminary doc thought is was probably nothing but agreed to have me see a surgeon. The surgeon thought it wasn't anything but I told him my gyn/onc was quite concerned and I wanted a biopsy. It was not in an easy spot to get, but he agreed to do a needle biopsy just to "reassure me". He didn't do it himself, but had a doctor who was training with him do my biopsy. Unfortunately, I had a collapsed lung from the biopsy and had to be hospitalized for a couple of days. So I was just home from the hospital when the surgeon called  to give me the biopsy results. To his surprise, but not mine, it WAS endometriod adenocarcinoma. He scheduled a wedge resection for me. I followed up with chemo afterward.  I guess from my experience, I would say for you to go ahead with your gut feeling and push for the surgery. It is quite uncomfortable to have the drain tube in your lung, but once it is pulled out it is quite a relief. It was an easier surgery for me to recover from than my abdominal resections.

oldbeauty
Posts: 316
Joined: May 2012

Thank you so much, jan9wils.  I called the recommended thoracic surgeon/oncologist today, and, good news, he had a cancellation and so I go for my consult this Friday.  I'm thrilled.  My node is in the left lower lobe and looks on the film like it is right up against the wall of the lung there, which suggests a simpler effort than yours was.  I'm not minimizing what a wedge resection could be, and I am 67, but otherwise in good health.  It's the prospect of a collapsed lung during any procedure that does concern me.  But I'll cross that bridge if/when.  Under the best of circumstances, I'd rather have this thing removed intact so that we can get as much tissue for analysis as possible, rather than puncture it for a biopsy and have "leakage." What I mostly am looking forward to is a single set of experienced eyes looking at my numerous scans sequentially to follow the various nodules that have been identified over the last 8 years.  (My latest rant against the faceless radiologists that simply read the next film in the queue is that this one mistakenly reported the nodule is on right and not the left. I plan to write her a letter (since you can't call them) and ask her to proofread her report and fix the error.  I will try (not very hard) to resist making the observation that it's mistakes like hers that cause people to have the wrong limb amputated.) I read somewhere that benign nodules do not respond to chemo drugs so the fact that the multiple nodules in 2017 resolved after chemo makes me suspicious now.  But I would much rather have the thing gone than risk waiting and have more show up, perhaps robbing me of an option I have now.  We'll see.  If I do end up having the wedge resection, I likely wil PM you to solicit advice on how to prepare and what to expect.  Thanks again for your response.  Best wishes, Oldbeauty

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

I have had local smaller hospitals make multiple mistakes (eg miss counting vertebrae on scans, losing test specims). I resort to writing the oversight agency for hospitals, Joint Commission. Google it. They have a form and are obligated to follow up with the hospital.

oldbeauty
Posts: 316
Joined: May 2012

I will look into that.  I may give myself the satisfaction of writing to her and telling her if I do not see a corrected report on my patient portal withn 30 days, I will file a complaint with the agency you identified.  I come from a place where precise language and proofreading were the norm.  It angers me no end to see such shoddy workmanship in a field that also is about precision.  The doctors all just shrug  it off.  OK. End of rant.  The sun is shining and the leaves are calling.  Good to "see" you, Susan.  I hope you are feeling more comfortable and engaged these days.  Happy Thanksgiving.  Best wishes, Oldbeauty

jan9wils's picture
jan9wils
Posts: 164
Joined: Mar 2017

Good news about your consult! I will check back to see how it goes. Wishing you the best!

Jan

SF73
Posts: 309
Joined: Oct 2017

with your consult, oldbeauty. Thank you so much for documenting your journey. You have no idea how valuable these are especially for women who had the garden variety endometrial cancer but had challenging journeys. I would include myself in that group. It is good to know we are not alone. So we are outliers but not isolated. More like the long tail of a distribution (mathematician humor :) )

oldbeauty
Posts: 316
Joined: May 2012

SF73, your story also is most instructive.  I wish you continued good health.  Best wishes to you and your lovely family.  Oldbeauty

Armywife's picture
Armywife
Posts: 452
Joined: Feb 2018

You continue to have my favorite name on the board, and I'm so thankful for your presence here and the detail with which you write.  What an encouragement it is to read your journey.  Will be following these new adventures with great interest and many prayers for you..

oldbeauty
Posts: 316
Joined: May 2012

Thanks, Armywife.  I am cogitating on my next update.  I saw the surgeon yesterday, and he agrees with me that it is appropriate to do the wedge resection, and he is not overly concerned about my safety in the hospital during Covid.  But he gave me some additional information based on his reading of my films, and that has me revisiting my decision making process to determine what it is I want to happen right now. More later.  Best wishes, Oldbeauty

Armywife's picture
Armywife
Posts: 452
Joined: Feb 2018

Praying for you as you decide.  I look forward to hearing your update.

oldbeauty
Posts: 316
Joined: May 2012

Hello all.  I had my surgical consult last Friday.  The surgeon looked at my films and took my history.  His opinion was that because needle biopsy is less than 100% reliable, and because this growth is likely malignant given my history, he said he agreed with me that it made sense to move right ahead with a wedge resection that would be both diagnostic and treatment oriented (assuming it's malignant).  He kind of threw a curve ball at me saying he appreciated two growths, with the second at the apex of my right lung (first one is in my lower left lobe at 1 cm).  He felt that, most likely, whatever pathology shows for the larger one is likely what the other is also.  He said he would do the wedge resection now for the left lower lobe and later, depending on pathology, he would either go back for the other one or I could elect to zap it with the Cyber Knife surgery. He offered me a date of 12/14.

I learned looking at illustrations for this surgery that the lung is deflated first as part of the procedure, which kind of freaked me out.  I had thought that a collapsed lung would be a complication; now I learn it's a feature not a bug!  Jan9wils relates how her lung collapsed during the needle biopsy, and she ended up in the hospital anyway before then going back in for the wedge resection.  Then, her story proceeds with having to do chemo after her eventual wedge resection, which surprised me.  I guess I was being naive.  I was hoping that the surgery would do me fine, at least for awhile.  I don't know what my gyn onc would prescribe for me after surgery; I may inquire but I'm sure all this has to wait for the pathology to come through.  I would be in the hospital just one night, assuming all goes well. 

As I reflected further on this over the weekend, I started to have second thoughts because of COVID, but today I feel confident that I value certainty about what I am dealing with more than I fear COVID.  Even if I am facing chemo after this, surgery to remove that 1 cm lesion, to me, has always been a given.  And, if I want to further rationalize, it seems to me to make more sense to get in there before any dramatic post-holiday wave of COVID infections start to build; get ahead of the curve so to speak.  

I got my flu shot already, and I went today for my pneumonia "booster," and I will strictly quarantine by 12/1 at the latest.  No plans for TG get togethers.  I've reached out to 2 neighbors who work for my medical center, one a surgeon and the other a respiration therapist, for feedback whether I am foolish for pursuing this in time of COVID.  We also have a friend in Texas who underwent this surgery last year for early stage lung cancer.  I will ask her about her experience; I know she was up and about in no time and she had no follow up chemo or anything.

I called FoundationOne today to find out the process for getting genomic testing done on the tissue.  It seems pretty straightforward.  Medicare will pay for "eligible patients," which she said depended on the Stage of the cancer, patient status and diagnosis.  I would think I'd qualify on all fronts, assuming the initial pathology shows a malignancy.  Without insurance, they discount their price to $3,500, and they have a program for income-eligible patients to control the out of pocket cost.

I can't think of anything else to do.  I put a call in to my gyn onc to talk about whether I should have a PET scan first and to discuss the tissue analysis I want, which I think my oncologist is in charge of, not the surgeon. 

So I feel I have the bases covered.   I do have a nagging thought that maybe I am being foolishly aggressive but then I consider that there is no guarantee that these nodes will stay small and slow growing and maybe in 6 months we'll find that the cancer has found a way to escape and spread.  This would be a no-brainer if not for COVID.  I don't know that there is a way to quantify the risk I am taking by doing this with COVID in the air.  I am confident that the hospital has adequate PPE, etc. and they take strict safety precautions for all staff and patients.  So I think what I feel are just normal pre-surgery jitters.

Thanks for listening to my ramblings.  Happy Thanksgiving and best wishes to all, Oldbeauty

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

OldBeauty, you know how I feel about being your own advocate!   Thank you for sharing your story.  I too believe you have made the right decision given what my husband went through.  Also  hope you can get a PET scan.  I just recently asked for one and my gyn/onc said fine but the insurance denied it.   So I had to just go with a CT scan and a Bone Scan. The CT scan showed nodules on my thyroid and some other incidental "findings" which my onc/surgeon didn't think it was anything to worry about.  However, it was the first time ever noted.  I will push for a PET scan again though in April/May when I get scanned again and I will have better insurance.  (My work dropped our insurance to basic in September through end of year)

Wishing you a Happy Thanksgiving!

Kathy

oldbeauty
Posts: 316
Joined: May 2012

Happy Thanksgiving to you and your children and their families, as well.  I am waiting to speak to my gyn onc today.  She answered my email in which I raised the PET issue.  She doesn't think it will add meaningfully to going ahead with the procedure.  My only issue now is whether she believes the 1 cm lesion is large enough to be fully diagnostic, both conventional and genomic testing.  If it's not, I will reconsider.  But I am confident in my decision otherwise, though the prospect of surgery is unsettling, as are the daily reminders that COVID is not under control.  Interesting times, indeed.  Best wishes tou you, brave woman. Oldbeauty

ConnieSW
Posts: 1574
Joined: Jun 2012

For what it's worth, I think your decision is a good one.  I am very cautious and weigh the risk factors for everything I do in regards to COVID.  I drive my poor husband crazy. Also, I am a retired RN who has always had a strong interest in infection control.

oldbeauty
Posts: 316
Joined: May 2012

I appreciate your view and experience.  Best wishes, Oldbeauty

BluebirdOne's picture
BluebirdOne
Posts: 452
Joined: Jul 2018

You have done a remarkable investigative job and seems like you have covered all of your bases and then some. Remarkable decisions to have to make during Covid, but if anyone can handle the virus it is hospitals. There is a risk to everything it seems. I think you have made a wise decision. Good luck to you and keep us informed as you are feeling able.

xxoo

Denise

oldbeauty
Posts: 316
Joined: May 2012

Thanks for the vote of confidence, BluebirdOne.  Best wishes, Oldbeauty

jan9wils's picture
jan9wils
Posts: 164
Joined: Mar 2017

When I had my lung resection I had recurred 3 times. The longest remission I have ever had is 18 months. That is why my gyn/onc recommended chemo again. It's not a given that it will be recommended for you. Try not to worry about that. Take it one step at a time. Get the tumor out and get the path report.

oldbeauty
Posts: 316
Joined: May 2012

I too have recurred several times already, but I've had longer remissions.  Thanks for the encouragement.  Best wishes, Oldbeauty

MAbound
Posts: 1153
Joined: Jun 2016

Well, the nodes just had to be on two lungs instead of the same one, didn't they? It's bad enough to be deciding about what to do about one procedure only to be told that you are going to need two! 

Thanks for sharing what's going on with you and how you've been reasoning out how to proceed. It all adds to the knowledge base that one never knows if they're going to need to refer back to someday. Do you know what the smallest a specimen can be in order for genomic testing to be done?

oldbeauty
Posts: 316
Joined: May 2012

MABound.  Great question!  I will call back FoundationOne today and ask.  A big reason I'm doing this is to capture tissue for full analysis.  So, thanks for this.  Best wishes, Oldbeauty.

 

ETA:  Just spoke to FoundationOne about tissue sample requirements.  There ARE guidelines, and I do not know whether my 1 cm tumor is up to snuff.  My oncologist is calling me today.  I will have the printed tissue sample guidelines by then.  Oh boy, this complicates things.  Thanks for raising the question.  Best wishes, Oldbeauty

Fridays Child
Posts: 214
Joined: Jul 2019

It sounds like it makes sense to go ahead and see what you're dealing with.  Best wishes to you and prayers for good news and fast recovery!

oldbeauty
Posts: 316
Joined: May 2012

I am doing my best to prepare and be optimistic.  Best wishes, Oldbeauty

Donna Faye's picture
Donna Faye
Posts: 430
Joined: Jan 2017

With your getting all the information you have and all the excellent advise from others. My road with cancer has been made less rocky by being able to ask and share with all the ladies on this board. Life is so fraught with risks and often we just have to trust our inner instinct. Many hospitals are reducing elective surgries, but my son says it is more to keep beds ready during this pandemic than danger of transmission. He says his hospital is cleaner and safer than it has ever been thanks to the added precautions. I have put 12/14 on my calender and will be holding you close. Know we all are and we love you.  df

oldbeauty
Posts: 316
Joined: May 2012

Your generosity of spirit, along with that of all the other ladies here who are also going through Dx and Tx issues, is most humbling indeed.  I have much to be grateful for this Thanksgiving.  Best wishes, Oldbeauty

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1801
Joined: Jun 2015

Thank you for sharing your update Oldbeauty. It is great to know that you have made a decision and it sounds like the best one for you. I hope the size of the tumor is big enough so that you can keep going on the plan. Take care and please let us know what you find out.  12/14 will be here before we know it!

Love and Hugs,

Cindi

oldbeauty
Posts: 316
Joined: May 2012

I appreciate your kind words.  Yes, I am nervous and there are moments when I start to second guess myself.  But I am going to move ahead with this.  Thanks for your support.  Best wishes, oldbeauty

cmb's picture
cmb
Posts: 730
Joined: Jan 2018

We all make treatment decisions based on what we know and feel. I can certainly understand wanting to have the tumor removed now when it's still small rather than waiting and possibly spreading. I believe your decision is a well-considered one, supported by what you've learned from your doctors and other knowledgeable friends.

While no procedure is risk free, especially in these times, I do think hospitals are doing their best to minimize the spread of Covid within their facilities, especially since infectious control supplies are more available than they were last spring. I've had several tests in the past couple of weeks (CT-scan, MRI head, etc.). All the medical personnel were very careful. And they've slowed the intake schedule so that there aren't as many people in the waiting areas and facilities can be wiped down after each patient. I'm sure theyll be even more careful with surgical procedures.

I'll be sending positive vibes your way on 12/14.

oldbeauty
Posts: 316
Joined: May 2012

Decision making is a lonely exercise, isn't it?  I trust, value, respect and consider the advices of all my medical providers.  Yesterday, I settled on the fact that this is MY disease (the statistic of one!) and this is MY body, and if I feel that I am at an important juncture, then I feel I should honor that and take an action that may seem drastic to some but feels right to me.  If this turns out to be "nothing" or even inconclusive, I will be chagrined perhaps but I will have obtained valuable knowledge and I will be alive and I will feel empowered. 

I hope everyone's TG was satisfying.  Hubby and I cooked one of our all time best meals and shared our bounty with others who were home alone, which we hope they enjoyed as much as we did.  We made some phone calls,  had a pleasant hike and watched a terrible movie.  A good day!  Best wishes to all, Oldbeauty

Molly110
Posts: 191
Joined: Oct 2019

Old Beauty,

 

I'm having my port removed in a couple of weeks, and none of my considerable anxiety about the procedure has to do with COVID-19, since I figure that most hospitals are safer palces to be than a grocery store. My gyn/onc was telling me just this week that it seems from the data that the risk of hospital-transmitted COVID-19 is low. He also said that he is seeing new patients come in with their cancer more advanced from COVID-related delay in seeking care. I think you are wise to do what you think is best for your health and well-being, despite the pandemic.

 

Best wishes,

Molly

oldbeauty
Posts: 316
Joined: May 2012

Thank you, Molly.  I hope your port removal is a breeze.  Best wishes, Oldbeauty.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1801
Joined: Jun 2015

Molly, I put some lidocaine on the area with some plastic wrap over it prior to going in. That helped so much that I barely felt the needle they used to numb the area. Once that was done I felt nothing during the removal procdedure. This was the easiest thing I went through from start to finish of my cancer journey. I had no pain afterwards either. Hope this helps.

Love and Hugs,

Cindi

Molly110
Posts: 191
Joined: Oct 2019

Thank you for your kind support, Cindi. I'm not worried about the pain. I hate the thought of being fully alert while someone cuts into my chest and fishes around for a tube that runs into a major artery right at my heart. I think it's barbaric that the hospital where I get care doesn't offer conscious sedation, which most of the institutions it would compare itself to do offer it to patients who want it. Just because it's a procedure they do every day that doesn't mean it's an everyday experience for the person being cut into. I am so frustrated and angry about my limited choice, which is to leave it in or to submit to the procedure there. I'd go to UW Madison, which is only a couple hours away, but it's out of state for me, and my insurance wouldn't cover it. 

The interventional radiology department has no relationship with the cancer center in terms of policy, so my wonderful gyn/onc can't order them to use sedation. I've been so privilileged -- and lucky, too -- to have been able to get my treatment at one of the top 10 academic cancer centers in the country only minutes away from my house and my work. I couldn't have gotten better care if I'd been the Queen of England, with the exception of having the port put in, which was one of the worst experiences of my life. Now I have to let the same people do it again, only this time at least it won't be an hour to endure. Chemo and radiation were frightening experiences the first time, but the difference was my doctor, nurse practitioner, chemo nurse, and others all had my back. They prepared me in advance, listened to my concerns, and held my hand, literally and figuratively. Interventional radiology was a different matter. I told them when I made the appointment and when I arrived over 2 hours in advance that the usual drugs used for conscious sedation didn't sedate me. Four different nurses came into the prep room while I waited, and I told each of them the same thing. The nurses tried to find the doctor so they could give me something in advance, but he only arrived 5 minutes before the procedure and told me it would be fine.

It wasn't fine. Whatever the gave me had no effect at all. I was wide awake and hyper alert for the entire 65 minutes in the procedure room. Because they expected the drugs to sedate me, they didn't tell me anything about the procedure itself, including that an xray machine would come out of nowhere and whir toward my head. I cried the whole time, tears leaking out of the side of my eyes while I stared at the digital clock in the room and watched the minutes crawl by. Then nurse kept patting my hand and telling me it was all right. I wanted to scream at her "NO, it is NOT all right. I told you this would happen and you didn't believe me." But I did nothing of the sort. The doctor midway through offered to give me something else, but I told him no as I'd then have to wait around before I could leave and I wanted to get away as soon as possible. Had I known that we were only half way through I would have taken it. But they'd told me the procedure was going to be 20 minutes.

As you can tell, I still have a lot of anger and frustration about that experience, and I hate having to put myself back in the hands of that department. After having a D&C and a hysterectomy -- both of which were a breeze -- I hadn't wanted to have another procedure, so I'd initially opted out of getting a port. My veins are small, so I gave up after two or three chemo cycles and got the port. Being wide awake on the table in that horrible room, powerless and afraid, was everything that I feared most about cancer treatment. Had I had the port put in before my first chemo I likely would have changed my mind about doing the chemo and radiation. As it was, I knew that experience was the outlier. My heart goes out to the women who post who have had much worse experiences from their own care team. I admire their bravery, grit, and persistence.

Thanks again,

Molly

SF73
Posts: 309
Joined: Oct 2017

Oldbeauty that sounds like a lovely day. We had a very similar thanksgiving. Thank you for sharing your decision making process with us. So much to learn from a 15 year survivor. Much love!

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1801
Joined: Jun 2015

Wow Molly. So sorry you went through that. Have you asked your Gyn/Onc-surgeon if they could remove it for you? Mine offered to do it but I had the same doctor that put it in remove because he was local and I was comfortable with him.  If that isn't possible, I would ask for some anxiety meds to take ahead of time. You should not have to go in there so upset.

Please update us as you go forward. I'll be thinking of you.

Love and Hugs,

Cindi

Molly110
Posts: 191
Joined: Oct 2019

Thanks, Cindi. I really wish my gyn/onc could do it, but in the hospital I use, it's only done by interventional radiology. My wonderful doctor did suggest that I take something first and offered to prescribe it, but I have a bunch left over from when I started chemo. I was reluctant to take an anxiety medication last year because I know the benzodiazapines are all pretty addictive, but I let a social work friend convince me, and it was a big help during the 3 weeks between my surgery and first chemo. After the first chemo was over and I was no longer afraid, I stopped taking the anxiety med, so I have plenty to take before the procedure. I'm sure it will help take the edge off, but it isn't the same as conscious sedation. I made an appointmennt last week for next Friday and it showed up the next day in My Chart, as all appointments do in that system. Then on Friday someone from interventional radiology called and asked me if she could move my appointment 2 hours later. I said that was okay, and then I noticed the next day that my appointment has entirely disappeared from My Chart. The port removal is not getting off to a good start.

I was telling my acupuncturist today that writing about the port insertion last night made me realize how angry I still am about it, which is unlike me. She said something very helpful -- that it will be out soon, and once I'm through that, I can let go of the anger and frustration. I think she's right -- what's been on my mind in the year since I had it put in has been that I will need to deal with those people again to get it out. 

I know I've been fortunate that the port insertion was the worst aspect of the last year of chemo, radiation, and recovery. Soon, the port will be in the past, and I can be grateful for how much easier the port made infusions and forgot about the interventional radiology department.

Thanks again,

Molly

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