USPC - how to approach my specialist with questions regarding treatment?
Uterine Serous Papillary Carcinoma - 1A but with high risk mismatch repair gene protein expression proficient (p53 mutant), and specialist advising a watch and wait after surgery.
It is scary that so many have the same diagnosis as myself and we seem to be around the same age (just turned 62) and had a few episodes of spotting as an indication that not all was okay. My oncologist has recommended no further treatment after surgery, which is an option but so many researchers recommend some form of chemo / brachytherapy that I am unsure how to feel about getting nothing done and a wait and see approach.
My journey: Early November 2021 I noticed a few spots of blood on toilet tissue. Had an appointment with my GP the following fortnight, so mentioned it. Fortunately, she was insistent that I have a PAP test there and then, although had one less than two years earlier which was negative. Also got some imaging done. Imaging nothing outstanding, but the PAP test showed adenocarcinoma - endometrial in origin. 7th December my GP rang me and said I had cancer of the uterus. 14th December specialist appointment, 16th had a D&C etc for biopsy. Results relayed to me on 21st December and had a Radical Hysterectomy the next day. Diagnosis: Uterine Serous Papillary Carcinoma stage 1A. The immunohistochemistry show a p53 expression status as mutant and Estrogen receptor status as positive.
My post operative has been very painful - discharged next day from hospital but a serious bacterial infection resulted me back in hospital the day after. Stayed in hospital over christmas and out after three days intravenous antibiotics. I have not been able to move around much for 4 weeks. Had much bleeding and discharge, which seemed to be within normal limits, but went for 5 week checkup with specialist and she found an infection - Streptococcus intermedius. and said should have gone back earlier. On Augmentin Forte for 10 days (now day 7), and pain has almost gone which is great, almost feeling able to do things again.
Hoping for some ideas from women with similar diagnosis - should I request chemo/radiography treatment at this stage? How about immunotherapy? What tests should my specialist do at the 3 monthly checkups? I am also not sure how to feel about the diagnosis - do i have cancer or did i have cancer? how should i feel - i think i am a bit numb and am dealing with it in a third-party factual way rather than personal something that is happening to me- that is a direct threat to the length of my life. Should I keep on the "third-person" thoughts or try and explore what it means to me? I have two children in their 20's one lives with me .
Comments
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Hello HM,
Welcome to our site!
I do not have your diagnosis. I was diagnosed as Endometrial adenocarcinoma Stage IIIA via pathology after my hysterectomy in December of 2020.
You have certainly been through a great deal already with the infections post surgery. I am glad you are finally feeling better.
I know there are women on this site that have the same diagnosis and are your age. They will reach out to you, I am certain of that.
I did share the same question whether I Had cancer or Have Cancer. I have been through both chemo and radiation. I had one PET scan and 2 CT scans that report no evidence of disease. You will see it as NED in posts. The NP at my first Cancer Survivorship Class suggested I believe the evidence of these scans. I find I am able to do that as more time passes.
((Hugs))
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Hi HM,
I hope you are on the road to recovery! You've already had to deal with a lot. My mom also has serous cancer, but she was Stage 4 at diagnosis, so no question she would receive chemo.
There have been older discussions involving whether Stage 1A serous should have chemo. From what I remember from past reading, it seemed the consensus was to get at least 3-4 rounds of chemo as a preventative measure. The p53 mutation is another risk factor. It is a personal decision however; but in my mind good to be fully informed of both sides prior to deciding. From my mom's experience, the chemo was totally do-able. So I'd try not to let anxiety about that influence the decision too much.
Are you at a large cancer center or teaching hospital? Perhaps a second opinion from a center like that will help. Those doctors see a lot more of the rare cancers and can give you an informed opinion based on what they've seen. The target is to start chemo within 6-8 weeks after surgery, so perhaps see about another opinion before then? If you are in the Midwest, my mom's doctor is at the cancer center at University of Wisconsin-Madison, and she is awesome. She does televisits if you'd like her name to schedule a second opinion visit.
Anne-Marie
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I would definitely get a second opinion, yes from a cancer center or a teaching hospital. I HAD an even more rare cancer, clear cell with serous mixed. I was 1A grade 3. My GYN/onc/surgeon said I really should have chemo followed by some sort of radiation because these rare cancers can be quite aggressive. I am not a fan of radiation of any kind but I did do the 3 brachytherapy treatments, that was after 6 rounds of chemo. The chemo was not exactly a walk in the park, but it was doable. I am in Oregon.
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Hello HM, and welcome! I agree with the women before me who have recommended that you get a second opinion. In addition to a second opinion on treatment, I would suggest that you also get a second opinion from a gynecologic pathologist on all of your pathology results. One question that jumped out at me was what happened to the endometrial adenocarcinoma diagnosis from your PAP test? Did your gynecologic oncologist have the specimen from that pathology report reviewed and determined that it was erroneous? Or do you have both serous carcinoma and adenocarcinoma? Before making a decision on what additional treatment, if any, is warranted, I would want to be certain that I had a complete picture of all of the details of my case.
Similar to you, my PAP also found adenocarcinoma. My endometrial biopsy likewise found adenocarcinoma, as did my final pathology report after surgery, which added that the adenocarcinoma was of the endometrioid subtype. Since, based on what you've stated above, your reports look like they have an inconsistency, I would want to get another pathological review of everything that was removed during your diagnostic timeline.
Best of luck and health to you!
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HM, I am curious, are you working with a gynecologic oncologist? The Nation Comprehensive Cancer Network (NCCN) recommendations for USPC 1A outlined there are very clear with at least radiation (PDF attached), and with your mismatch repair there are clinical trials that are addressing this exact thing.
May I ask if you are working with a cancer center? They would be very familiar with the NCCN protocols, and these are updated regularly, but this might be good to point to. Please let us know how it goes. My antennae go out when I hear things like this.
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Hi, thanks for your interest, much appreciated. Yes my specialist is a gynaecological oncologist. The PDF is very useful too. I am getting some questions organised to discuss with her and expect that she will support me getting the treatment/s. This network is really helping me to get motivated to be proactive - rather than just making the assumption that the cancer is gone forever without further treatment.
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Hello HMcd60, I have UPSC stage 2, my gynecological oncologist referred me to a medical oncologist for decision on chemo, and she stated that chemo is recommended for all stages of UPSC, even stage 1, because it is very aggressive with a high recurrence rate and a high mortality rate. She also referred me to a radiation oncologist who recommended vaginal brachytherapy. I had vaginal hysterectomy with tubes, ovaries, pelvic lymph node dissection and omentectomy, 6 rounds of chemo with Taxol/ Carbo, and 5 vaginal brachytherapy treatments, and will be 1 year NED if my next CT scans are negative in March. The chemo was hard but after much research I felt it offered me the best chance of survival. I see medical oncologist every 3 months, get chest, abdomen and pelvic CT's and CA 125 drawn every 3 months, I see gynecological oncologist every 6 months and have a pelvic exam, and radiation oncologist every 6 months. I agree with everyone else regarding their recommendation of a second opinion.
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Frances081920 - happy to see your update and learn that you're being so closely monitored. Those frequent tests and exams can get tedious after a while, but staying on top of things to catch any possible a recurrence with an aggressive type of uterine cancer so very important.
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Welcome. This is a hard time. But having your staging done and scans is at least definitive. I have a question. What was. your myometrial invasion? I was in this place 3 1/2 years ago. Stage 1A can mean many things. And I believe the only 1A they don't recommend any treatment for is no residual malignancy in the hysterectomy specimen. I agree a second opinion is in order. Unless your biopsy report from surgery showed no malignancy.
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Thank you so much Frances - your post along with the others did ensure I went to a second opinion with a medical oncologist. The outcome is that I am undergoing 4 rounds of Carbo - just had one so far. The oncologist said that this reduces recurrence by 50% - from 30% down to 15% recurrence for my stage (1A). I have attached a summary of the research papers I looked at with their links and conclusions that are particularly relevant which others may find helpful when looking into this. All the best.
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Hi HMcd60,
I haven’t joined this thread before now because my diagnosis was different from yours. I was Stage II, endometriod adenocarcenoma, Fallopian tube, & secondary peritoneal. No lymph nodes or LVSI. I felt like it would be better to let our sisters here help you who have similar circumstances!
But I’d like to chime in now and express how happy and relieved I was to read that you are receiving chemotherapy. I have been very concerned and hated to see you put it aside and then end up with a recurrence. I think all here would agree, treating it properly at the beginning offers you the very best chance of having a “cure.”
Probably like many others, my initial reaction to being told I would need chemo was to try every argument possible to talk my ONC out of it!! He would not be moved! Can’t we just get it all with surgery and then wait and see? He said, “No. If we do that you will be back here in 3 months and have every symptom in the book.” After that initial conversation and tons of research, I told him, “As much as I hate this, I think if I was Stage I I might be begging you to give me chemo! I only want to do this once!!!”
It IS your best chance of only traveling the road once, and live a long time!
You have my hugs and prayers! Keep us posted as to how you are doing!
😎, Alicia
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Good morning!
Being a part of this board, and having the support of our friends here, is invaluable. We are very lucky to have each other! I honestly don’t know how I would have gotten through my cancer without them!
❤️, A
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HMcd60,
I'm also glad to hear that you got a second opinion and will be receiving chemo. UPSC can recur often even in the early stages and the best chance to stop the chance of that is to have post-surgery treatment. I know that you had some problems post surgery, but I hope chemo goes more smoothly for you. As others have said - it's "doable."
If you haven't already, you may want to see the links on chemo and icing in the FAQ topic for some specific information on those subjects.
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I was uterine serous carcinoma diagnosed January 15, 2020. I would just make sure either way you are getting follow up CT scans at least once or twice a year. MD Anderson recommended observation only after 6 Chemo & some radiation to prevent reoccurrence unless I had systems. They did not recommend CAT scans. My local oncologist was not comfortable with that. This past Oct 21 she put in for a CT scan on Feb 18 2022 my next appointment. At that time they found extensive peritoneal carcinoma in my abdominal area & a few other spots to watch. I had my Biopsy two days ago on Mar 1st to confirm & identify where it started from…I’m praying not my colon which would complicate everything even more. If anyone on here is dealing with peritoneal Carcinoma please paste and cut this or link me to others facing this kind of reoccurrence or primary condition. I’m so scared. HmCd60, the Chemo for me first time around wasn’t bad. I’m wondering if I should have waited and watched with CT scans though as it seems to have not prevented this…then saved my first chemo for a real reoccurrence rather than a possible one. I wish I’d had earlier CT follow ups to have caught this before it was extensive. I hope the next chemo they seem to be recommending with go as well as possible.
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