how soon after surgery did you start the chemotherapy?
Hello everyone,
I had a hysterectomy (left both ovaries in) in June and subsequently diagnosed with endometrial cancer (endometrioid type, FIGO grade 2 , stage 2 - incomplete staging since no lympy node was removed) Last week I had another laparoscopic surgery where my ovaries, omentum, appendix and a 6 cm solid mass attached to my right ovary were removed. We still don't know whether this is a second primary cancer (ovarian) or the recurrence of the original endometrial cancer. I am told my pathology report should be available tomorrow. This time my oncologist mentioned wanting to follow up with a chemotherapy.
I have recovered nicely from my surgery already and am anxious to start the adjuvant therapy. I read that 'Since the late 1970s, there has been evidence that tumor removal as well as surgical trauma might lead to an accelerated growth of micrometastases'. I wish I knew this last week. I would have asked if it would make sense to have a single course of chemotherapy prior to the surgery. Tomorrow, when my doctor calls to discuss the pathology report, I am planning on insisting we start the chemotherapy this week. And wanted to get your opinion on a few items.
1) How soon after the surgery did you start your chemotherapy? Is it dangerous to be too aggressive?
2) I will be getting a second opinion by the end of the month from another instutition. Would it be possible for me to start the chemotherapy now and switch to another anticancer drug later if that turns out to be the recommendation? Waiting until the end of the month seems very risky to me since my recurrence was fast and furious.
3) How long after the ovaries are removed is the body free of any estrogen?
4) Were you given any medication while waiting for the chemotherapy? Megestrol? Metformin? Progestin?
Thank you in advance for all your help!
PS: I thought some of you might find this portion of the paper interesting:
http://ascopubs.org/doi/full/10.1200/jco.2013.54.3942
In addition, postmenopausal women with node-negative disease benefited significantly and substantially from a single perioperative course of chemotherapy initiated within 36 hours of surgery compared with a randomly assigned control group receiving no adjuvant therapy exclusively for the cohort of patients with ER-absent disease.
Comments
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6 weeks
I started chemo 6 weeks after abdominal surgery. You want to be healed because wounds don't heal as quickly when you're on chemo. I spent the time (after 3 weeks) taking a trip to Tuscany
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I started chemo 3.5 weeks
I started chemo 3.5 weeks after surgery. I wasn't given any medication prior to chemo.
Welcome ckdgedmom! Looks like this is your first post. Glad you found us. Based on when you had your surgery, I'm assuming you finished all front line treatments. I hope you are feeling well and dancing with Mr. Ned!
SF73, I don't have answers to your other questions. But, my niece had a complete hysterectomy at age 37 and went into surgical menopause within a month. Boy did that play havoc with her until they got her hormones regulated! She had cervical cancer. I don't know how old you are but if you are post menopausal, you many not feel much difference.
Come back and let us know how you are doing.
Love and Hugs,
Cindi
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Surgery was April 27, first
Surgery was April 27, first chemo May 31.
FYI - make sure they step you down in dosage on steroids. Donna Faye was NOT and had a horrible time.
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I started chemo 3 weeks after
I started chemo 3 weeks after a radical hysterectomy for Stage IIIb, Grade 3 undifferentiated cancer. I wasn't given any medication beforehand. I was 59 and still in perimenopause, so I still had circulating estrogen. I had hot flashes for about 6 months after surgery, but they were very manageable. Of course I'd been in perimenopause for the preceeding 10 years, so perhaps it's just that I was used to them. I understand your concern about starting chemo vs. waiting but, what I wish I had known then - and what my incompetent gyne onc surgeon didn't tell me, or perhaps even bother to research herself - is that not all endometrial cancers react to the taxol/carboplatin "standard of care". My original path report showed that my tumor had microsatellite instability, a condition which has been documented - since the late 1990's - as leading to platinum resistance. I'd finished my 6 rounds of "standard" chemo when a pre-radiation CT scan identified mets in my retroperitoneal lymph nodes. A Foundation One biopsy confirmed the existing genetic profile, along with a couple of new items, none of which are actionable. So, any further recurrences will have to be dealt with via something that is NOT platinum-based. Had this information been noted the first time around, I would have been on a different chemo cocktail to begin with and, perhaps, not had the recurrence. I say this not to frighten you but to let you know that not all chemos are created equal...so it might be worth waiting a couple of weeks for your second opionion.
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Thank you for all the responses
welcome, ckdgedmom!
ConnieSW, it seems yours was the most aggressive timeline (2 weeks after surgery) and glad to see that chemo did not cause any complications in your recovery from the surgery.
cheesequeen, Tuscany is a wonderful place to wait for the start of a difficult treatment. Glad you were able to recover from your surgery at such a nice place.
derMaus, I am 44 years old. I was not menopausal prior to the surgery. I am not that concerned about hot flashes, mood chances. I am sure that I can handle those. Since my tumor is ER positive, I think any unopposed estrogen in my body is increasing the risk of recurrence and I hate that I am not taking anything to counter that (Megestrol? Progestin? Metformin? ) Thank you for the info abut microsatellite instability. It is scary how much research we need to do in order to ensure we get the right treatment. Can I ask my oncologist to order Foundation One now or do they need to check to see if the standard of care is not working before they can justify ordering a complete genomic profiling of the tumor?
It seems like the timing of the chemotherapy has been studied a bit but primarily for breast cancer. This website summarizes some of those findings:https://sciencebasedmedicine.org/you-have-breast-cancer-how-soon-do-you-need-treatment/ The sooner the surgery the better it seems. For chemotherapy some studies say the sooner the better, others say as long as it is done within 90 days of the surgery, outcomes (survival, recurrence etc) are similar. Of course breast cancer is not a homogeneous thing. Some probably benefit more from an earlier start of chemotherapy. My first surgery was at the end of June. I believe I should have gotten chemo after my original surgery. Counting from the original surgery it will be 125 days if I start the chemo on october 30th
That is a scary thought. All the best!
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My mother... UPSC
My mom has UPSC 1B, suggested approx 6mo of Chemo and Radiation (other specifics unknown until the 24th), but it seems like they are wanting to start treatments very soon. Her diagnosis was just earlier this month, and has already had her complete hysterectomy... this has all moved so quickly. It's quite a whirlwind. I can't imagine doctors wanting to delay any sort of treatments for anyone with this type of cancer- get in there ASAP is my understanding.
-Decor620
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We are all individuals
I started chemo 4 weeks after a TAH. I went straight from getting my staples, drainage tube, and foley catheter out to the infusion room. That was quite a day!
There are so many variables to this cancer that there is no one-size-fits-all answer to your questions.
My take on this is that you are still in panic mode here and need to take a breath so that you can take this one step at a time. Wait for that pathology report. Give yourself a chance to heal internally. Get second and even third opinions. Ask about genetic/genomic testing. These are all important to getting the right plan of action instead of settling for the quickest one; chemo drugs are powerful medicine with potentially serious side effects so you don't want to be on them any longer than you absolutely have to be. Starting on an ineffective drug to switch to something else later will only expose you to greater risk. Der Maus's experience is a testament to how important that is.
When you research, focus on the most recent studies because the science has been changing very rapidly in just the last 5 years or so and there's a lot on the internet that is already outdated. Also focus on studies done on endometrial cancer because what's true for other cancers does not necessarily hold true for all cancers. There is a huge learning curve with this diagnosis and it just doesn't pay to get too far ahead of yourself. There are always going to be new things to look into as you go along. You need more specifics about your pathology and what course of treatment is going to be recommended before you can research anything with effect.
I'm sorry I couldn't give you the answers you were looking for, but hopefully you'll take some comfort from hearing that you've got some time here to get your answers as more information comes in for you. Dealing with this cancer is not a sprint, it's a marathon. Pace yourself for this taking months or more to get through, but know that it is doable. 2016 was pretty much a lost year for me, but then I made it to enjoy 2017! Hang in there!
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Get Foundation One testingSF73 said:Thank you for all the responses
welcome, ckdgedmom!
ConnieSW, it seems yours was the most aggressive timeline (2 weeks after surgery) and glad to see that chemo did not cause any complications in your recovery from the surgery.
cheesequeen, Tuscany is a wonderful place to wait for the start of a difficult treatment. Glad you were able to recover from your surgery at such a nice place.
derMaus, I am 44 years old. I was not menopausal prior to the surgery. I am not that concerned about hot flashes, mood chances. I am sure that I can handle those. Since my tumor is ER positive, I think any unopposed estrogen in my body is increasing the risk of recurrence and I hate that I am not taking anything to counter that (Megestrol? Progestin? Metformin? ) Thank you for the info abut microsatellite instability. It is scary how much research we need to do in order to ensure we get the right treatment. Can I ask my oncologist to order Foundation One now or do they need to check to see if the standard of care is not working before they can justify ordering a complete genomic profiling of the tumor?
It seems like the timing of the chemotherapy has been studied a bit but primarily for breast cancer. This website summarizes some of those findings:https://sciencebasedmedicine.org/you-have-breast-cancer-how-soon-do-you-need-treatment/ The sooner the surgery the better it seems. For chemotherapy some studies say the sooner the better, others say as long as it is done within 90 days of the surgery, outcomes (survival, recurrence etc) are similar. Of course breast cancer is not a homogeneous thing. Some probably benefit more from an earlier start of chemotherapy. My first surgery was at the end of June. I believe I should have gotten chemo after my original surgery. Counting from the original surgery it will be 125 days if I start the chemo on october 30th
That is a scary thought. All the best!
Get Foundation One testing now, if possible. It can save you headaches later. I also wish I'd had a live tumor assay, aka chemosensitivity testing, at the time of surgery. God knows I had PLENTY of tumor for them to work with, but my $)#)*$# oncologist didn't even mention it to me, despite having one of the largest labs in the country across the street from my hospital. You might want to search the site for other people's postings about genetic analysis; Beebster posted this on May 19th and I found it very helpful: Mutations/Molecular Analyses will be key to treatment. Also, since the FDA approved Keytruda for any tumor with microsatellite instability (May 23), you may be eligible for immunotherapy depending on what your tests say.
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Get the Genetic Testing Now
Even though I asked for it, my doctor didn’t get serious and do the Foundation One test until I had a reoccurrence. Why not have all the info ASAP?
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I am the oddball here. I was
I am the oddball here. I was 3C endometrial with clear cell features. About 4 or 5 weeks after robotic surgery I started 5 1/2 weeks of external radiation followed by 3 internal radiation give 1 each week. Then onto 6 rounds of carbo/taxol. My journey was basically surgery Oct15 and chemo completed by end of June I believe. So far I am clear since August 2016.
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Thanks derMaus and
Thanks derMaus and cheeseQueen, I will try to get my oncologist to order Fooundation One.
MABound, you are absolutely right. I am panicking and maybe overcorrecting my behavior after the first surgery. After the original hysterectomy in June, even though I had questions about not needing any further treatment, I listened to my oncologist and did not seek another opinion. I am a neurotic person by nature, worrying is something I do independent of my health. Let me put it this way: over the years I googled my symptoms to check whether or not I had various cancers many times before I actually got cancer
After the surgery, I convinced myself that this capable person is delivering me good news and the part of me that was questioning is my neurotic nature. Early September I visited my gynecologist because of bloatedness and pain during bowel movement and she said it must be a stomach bug and that I should not attribute every anomaly to having had cancer. It would have been wonderful if she gave me an ultrasound. By then my mass on my ovary would be big enough to see. It would have saved me a month! Now since my worrying was right and doctors were wrong at least in three different occasions, I have a hard time stopping the voice in my head. Now I think my neck hurts, I think my armpits are swallon and that all of these could be a sign of metastasis. Don't know if it is real or not. But you are absolutely right. I have to pace myself. This is a marathon not a sprint. Thank you so much for all the support you guys are giving. I am about to drive my husband crazy. It is good to be able to share these feelings with individuals who are also going through them.0 -
I understand. Ask your doctoSF73 said:Thanks derMaus and
Thanks derMaus and cheeseQueen, I will try to get my oncologist to order Fooundation One.
MABound, you are absolutely right. I am panicking and maybe overcorrecting my behavior after the first surgery. After the original hysterectomy in June, even though I had questions about not needing any further treatment, I listened to my oncologist and did not seek another opinion. I am a neurotic person by nature, worrying is something I do independent of my health. Let me put it this way: over the years I googled my symptoms to check whether or not I had various cancers many times before I actually got cancer
After the surgery, I convinced myself that this capable person is delivering me good news and the part of me that was questioning is my neurotic nature. Early September I visited my gynecologist because of bloatedness and pain during bowel movement and she said it must be a stomach bug and that I should not attribute every anomaly to having had cancer. It would have been wonderful if she gave me an ultrasound. By then my mass on my ovary would be big enough to see. It would have saved me a month! Now since my worrying was right and doctors were wrong at least in three different occasions, I have a hard time stopping the voice in my head. Now I think my neck hurts, I think my armpits are swallon and that all of these could be a sign of metastasis. Don't know if it is real or not. But you are absolutely right. I have to pace myself. This is a marathon not a sprint. Thank you so much for all the support you guys are giving. I am about to drive my husband crazy. It is good to be able to share these feelings with individuals who are also going through them.I understand. Ask your docto for something fo your anxiety.
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My chemo begins this Thursday
My chemo begins this Thursday, then once every three weeks for a total of 6 treatments. Port goes in tomorrow. At this time no radiation scheduled. I don't have MMRT after all - it's papillary serous. Original path report was incorrect.
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what now?
Pathology report is back. I didn't get a chance to review with my oncologist who is out of town but from what I can see, left ovary was fine, appendix was fine. Right ovary was completely consumed by this 7 cm mass, a moderately differentiated endometrioid endometrial adenocarcinoma (so not a new ovarian cancer, this is a recurrence) and worse of it all, the omentum has metastasis at the microscopic level. One good piece of news is I don't seem to have microsatellite instability issue that derMaus was mentioning.
I believe the presence of cancer - even microscopic- in omentum puts me in Stage IVb. My whole journey started in early June with some complex atypical hyperplasia with foci highly suspicious for endometrial adenocarcinoma. Initial guess was it would be stage 1, grade 1. 5 months later, I am in stage 4b at the age 44 with a kid whose only 11. Every article I read so far suggests poor prognosis for omental metastasis. I try to stay positive but it is hard. My husband and I discussed my diagnosis with our daughter but I still have not told my parents who live overseas. They know about the hysterectomy in June and immediately came to visit us. But they thought that the surgery was for the fibroids and to prevent future chances of developing cancer.
I am trying to get complete genomic profiling of my tumor. It has been so challenging. Since my oncologist is out of town, his team made an appointment for me in genetic counseling which is not what I am interested in. I am more interested in the acquired alterations (genomic alterations) which are responsible foor the majority of cancer, as opposed too hereditary changes (genetic alterations) which are responsible for about 5-10 percent of cancers. It is very disappointing that my oncologist's team does not know the difference. I will see him on Monday and hopefully get him to order Foundation One. At the end of the month I will get a second opinion from Stanford. I called to see if they can authorize the ordering but they said the oncologist needs to see me first and the person who performed the surgery should be requesting this.
In the meanwhile, I started taking Megestrol (my regular gynecologist who mistook my initial recurrence symptoms in early September as food poisioning prescribed them to me) Put myself on a quasi-keto diet. (I am a pescetarian, I eat fish but no other meat) I was not too heavy to begin with. I am five foot one, used to weigh 140 pounds (back in June). Now I am 126.6 (last 5 pounds lost in the last month) I still have my appetite but I am so afraid of feeding the cancer. I read a few tiny studies that mention the benefits of ketogenic diet in conjuction with chemo. This is something I can do without having to fight with bureucracy. I don't think I have insulin resistance. Few times it was measured, my blood sugar was low. I have to convince someone to give me the IGF-1(insulin growth factor) test I guess. Do you think Metformin during chemo can help me as it helped others on this forum? I want to make sure I am doing everything I can. What else can I do?
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ugh. such a depressing study
https://link.springer.com/article/10.1245/s10434-015-4443-1 I should stop googling.
Do you guys know any cancer survivors who had Microscopic Omental Metastasis of Endometrial Cancer (endometriod type) who responded well to chemotherapy?
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For SF37
I have no answers but am sending you lots of virtual hugs...
as to the Googling...lol I did that Sunday night and was a big hot mess in my radiology oncologist's office on Monday---he told me to "quit the Google" and remember that a lot of studies are old. Given your age (and I too am fairly young for this cancer at 52) many of those studies are on women much older than us with health issues that come with aging. So no more google for me (except for work and recipes)
As for diet, if you feel it will make you feel better I say go for it---my doctor believes I am doing as well as I am because I am eating low carb and practice yoga almost daily...
sending more hugs...sorry you have to wait for your oncologist to return to get some answers
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